Autoimmune diagnosing problem

Posted by Brie @brie87144, Jul 20, 2016

I don’t know what to do at this point. I’ll give some of back my story, up until I got extremely sick in October 2014, I was completely healthy and what I considered normal. I rarely went to the Doctor for anything, rarely got sick and I was always on the go. I’m a 32 year old female, married with 2 kids. In October 2014 I came down with some sort of virus. I was extremely sick for about a week. Within 2 days of feeling better I started having pins and needles only on my left side in my arm, hand, leg and foot; my left leg also started falling asleep. I just thought all that was weird and went on with my life, not seeing a dr or anything. Starting in January of 2015, my symptoms started getting worse. I was walking through a parking lot when I lost complete feeling of my left leg and fell. It lasted about 30 mins or so before I started getting feeling again. By this time my pins and needles were staying constantly, the numbness was becoming more frequent, and now my left side was extremely weak. After visiting my primary she confirmed the weakness, ran a bunch of lab work and referred me to a neurologist in my area. Fast forward to December 2015, I had 2 mri’s, completed physical therapy and been seen by 2 neurologists, both of which told me they didn’t want to spend the time to help figure anything out. My pins and needles had now migrated to the right side, and my face; I lose complete feeling in my left and right legs, more on the left, as well as in my left hand; My bladder started giving me issues retaining and releasing; I frequently become so extremely tired I can’t get out of bed for days, sleeping the entire time; my balance is so out of whack that there are days I’m walking and I look like I’m drunk because I can’t walk well; started having memory issues, as well as word finding issues. Because of the random dead leg, and balance issues, I fall frequently. So I decided to come to Mayo Clinic.

They have done numerous tests and blood work. I have had a full spinal and brain MRI, EMG (x2), spinal tap, skin biopsy, audiology testing, balance testing, ARS, QSTAT, BAER, VER, SSER, Nystagmography Tests, Tilt table testing, dynamic posturography tests, urology testing, and I’m sure some others I can’t think of right now and all have come back clear except a few small issues, but don’t offer any insight to my issues. I came back positive for small fiber neuropathy, I failed all six stages of my balance testings but because I didn’t need assistance the dr said he won’t consider it failed and nothing was done, they found mild bilateral hearing loss, and my tilt table came back slightly abnormal.

I’ve seen consultative med, hematology, neurology, urology, integrative medicine, and psychiatry. No one can figure out what’s going on but my life has changed so much that I need to figure out what’s going on so I can either treat it or figure out how to deal with it. I have a hard time staying awake, my balance is completely off, I randomly lose feeling in places and fall, I’m weak on my left side and have issues standing for long. I was going to school full time and had a 3.85 GPA until this now it’s dropped to a 2.75. I can’t keep up with anything and I don’t know how I’m going to work when I can’t tell when there will be days I can’t wake up or get up. Or when My balance is so unstable I can’t walk with out help.

I was referred to neuromuscular and saw the Dr this morning. He said I won’t treat anything until we know more, which is fine because I want to know more. But told me to have a great day and didn’t tell me what to do next or where to go from here. He just said send me a message of it gets worse. I don’t have any other appointments or outlook on what to do now. I’m not out seeking, looking for, or even asking for medications. I just want to figure out some sort of normal. I don’t know how I’m supposed to help support my family or work of I can’t even do anything. But not knowing I don’t have many options, can’t get medical help or anything.

I’m so frustrated and feel like everyone’s brushed me off. What I wouldn’t give to just feel normal again or at least have an answer.

@dogmamat

Hi, I am new to Mayo Connect. Tonight I had an honest chat with my chiropractor of close to seven years. He has seen my illness progression with care at least 1ce a week. The discussion went-Terri you are getting worse despite all the specialists and many tests that don’t show anything wrong. My definitive tests are low cortisol/Adrenal insufficiency; extremely high anti centromere ANA; a tiny sacral fracture at s4; L4/L5 disc herniation, Raynauds, GERD. I suffer from small intestine bacterial overgrowth. I need to have my esophagus stretched periodically. I have glaucoma, nystagmus. i have mild obstructive and central sleep apnea.

I am on 20 medications, cpap, have started using a walker (prior I had a cane).

I have fallen 4x since early July-with falls that have resulted in my sacral fracture and earler this week one deeply scraped knee. I have had trouble feeling the upper half of my feet since winter.

So now a step back. My health history from a baby was one of chronic infections and clumsiness(falls) that resulted in trying ballet school to give me my lacking gracefulness. Unfortunately I was bound to be someone who would fall….college field trip to Costa Rica and I met the earth many times…3x in 2 weeks. Pre-med students said I needed eval of my ears. I actually almost lost my hearing due to a major infection before I graduated. Grad school I had signs of POTS as I found my tressured references hidden on bottom book shelves. Walks around campus Ivwould periodically fall-sometimes alone,sometimes to the disbelief of professors and colleagues.

Through grad school I would have crouppy respiratory infections. Every 6 weeks like clockwork i needed antibiotics. At home, roommates would complain my hair was everywhere. ivwas always losing hair. Colleagues thought I was anorexic when I truly was eating.

Then I graduated and entered the work force paper thin, and really sick, without a clue of what was wrong. The next ten years were tough. I was lucky to last a year at jobs. I would quit because the physical-ness or stress just shut me down. Those years I didn’t have insurance; pre-existing conditions were a factor when I tried to get insurance.

Beginning in 2004, my life really changed. i almost died of bowel obstruction/stenotic lesion. Then every 2-3 years I kept landing in the ER- PE /heart attack fear that turned out to be GERD-but they gave me coumadin to be safe; ischemic colitis which was initially called hemorrhoids; and severe muscle spasms.

In 2005, a pain management doc gave me a death sentence. He told me I had disautonomia and to get every book on it and that people usually survive 7years from diagnosis. The death sentence made no sense…unless he thought I would have multiple system atrophy (Shy Drager Syndrome).

So finally in 2008, I got a steady job and health insurance. I told my PCP I had clinically expedienced scleroderma attributes-so he sent me to a rheum, who also connected me to a GI specialist.

I ened up at a clinic focused on arthritis. I was treated for muscle pain/arthralgias and in 2011 got a SLE (LUPUS) diagnosis. i was started on Benlysta infusions in 2011.

i ended 2014 with a month long upper respiratory infection. Thenthe slide continued-about 3 months of vomiting, interspersedvwit periodic incontinence. i moved GI care to a local teaching hospital. 5 months later I moved primary care there. 4 months later moved rheumatology care too, and gained other specialists.

But here’s the problem-my care became very distributed-specialist silos. No one looking at the whole me.

Docs unwound the scariest meds-metotrexate,nuvigil. And…with the opiod abuse crisis abundant, no one would own my Butrans patch. So I quit cold turkey.

So here I am today with a list of diagnoses, using udifferentiated connective tissue disease as a catchall that would be worse jargon than lupus, scleroderma, etc…which urgent cares and ERs dont always recognize half the time.

My eyes started giving me trouble over last 4 months. I had inflamation of my eye orbitals and slight bulge. Endocrinology Evaluated for Graves- but it is not. One test, TPO had positive antibodies at 35. The standard is 60 to treat positively…but Mayo uses 9 Um/L. So inside I still wonder if I have Hashimoto Thyroiditis. Alternatively I asked my eye doc about Myasthenia Gravis. I tested positive for 1 of 3 tests. So he said I had it. But Nurologist said binding antibodies were okay (top of okay range).

And here I am, in a mire of chemicals, with no real effort to stop sliding worse. struggling to understand my conditions and feeling like I am getting worse. i have EMG next week and pray for real results. Last EMG, the doc said, even if you have MS what are you going to do?

My chiro said reach out-stop the downward spiral.I am on too many medicines and how can we know what is working. I feel like going off ben.ysta infusions was a mistame and now I have all this eye trouble and physically feel a downward slide with muscle weakness, falls, imbalance.

So this is my story-how do I get better so I can function safely at work. Are my diagnoses right or am I a bunch of unrelated puzzle lieces requiring lots of meds and still spinning downward. Have we done all the right tests? God i am waiting to hear ypur illness is all in your head…while my heart says I am too young to be giving up-bit I have fought illness my whole 52 year life (4 years past my expiration date).

Thank you for hearing my story. I feel my experience is just like many others…we just want to be understood and recover to enjoy life fully..

Jump to this post

@colleenyoung
No problem, we try to help. Priority 1 for you is making a caregiver, friend or relative aware that you fall, and fall often. That is your biggest immediate danger. Second, get those meds reviewed and get them managed by one clinic or group. You are taking drugs that lower your BP and are complaining of fatigue, a known side effect. Don’t stop them without supervision by any means. Read the link I sent you about adrenal insufficiency. You may have had Addison’s disease before all of this started it is likely that it would have landed you in the emergency room long before now. My 2 cents again. But that is for evaluation by an endocrinologist and it is easily done.
With POTS any meds that effect BP must be managed by a specialist. Make the neurologist aware of this, and your falling as well.
You may not have many problems, you may only have a couple that have not been managed. Lupus is a monster. It is known as “the great imposter” and can make things look like multiple separate illnesses. I’m not saying that’s what’s going on here, just an fyi.
You said this above: “i have some areas on my head that are truly thinning (I had a chunk come out behind my ear)”. What does this mean, that a piece of your skull came out? I certainly hope not and if you have been injured, its a 911 issue and not one for a blog.
Put together a simple plan based on simplifying what seems like an impossibly complicated situation with the help of your doctors and other caregivers. Get enough rest.

Hope this helps.

REPLY
@dogmamat

Hi, I am new to Mayo Connect. Tonight I had an honest chat with my chiropractor of close to seven years. He has seen my illness progression with care at least 1ce a week. The discussion went-Terri you are getting worse despite all the specialists and many tests that don’t show anything wrong. My definitive tests are low cortisol/Adrenal insufficiency; extremely high anti centromere ANA; a tiny sacral fracture at s4; L4/L5 disc herniation, Raynauds, GERD. I suffer from small intestine bacterial overgrowth. I need to have my esophagus stretched periodically. I have glaucoma, nystagmus. i have mild obstructive and central sleep apnea.

I am on 20 medications, cpap, have started using a walker (prior I had a cane).

I have fallen 4x since early July-with falls that have resulted in my sacral fracture and earler this week one deeply scraped knee. I have had trouble feeling the upper half of my feet since winter.

So now a step back. My health history from a baby was one of chronic infections and clumsiness(falls) that resulted in trying ballet school to give me my lacking gracefulness. Unfortunately I was bound to be someone who would fall….college field trip to Costa Rica and I met the earth many times…3x in 2 weeks. Pre-med students said I needed eval of my ears. I actually almost lost my hearing due to a major infection before I graduated. Grad school I had signs of POTS as I found my tressured references hidden on bottom book shelves. Walks around campus Ivwould periodically fall-sometimes alone,sometimes to the disbelief of professors and colleagues.

Through grad school I would have crouppy respiratory infections. Every 6 weeks like clockwork i needed antibiotics. At home, roommates would complain my hair was everywhere. ivwas always losing hair. Colleagues thought I was anorexic when I truly was eating.

Then I graduated and entered the work force paper thin, and really sick, without a clue of what was wrong. The next ten years were tough. I was lucky to last a year at jobs. I would quit because the physical-ness or stress just shut me down. Those years I didn’t have insurance; pre-existing conditions were a factor when I tried to get insurance.

Beginning in 2004, my life really changed. i almost died of bowel obstruction/stenotic lesion. Then every 2-3 years I kept landing in the ER- PE /heart attack fear that turned out to be GERD-but they gave me coumadin to be safe; ischemic colitis which was initially called hemorrhoids; and severe muscle spasms.

In 2005, a pain management doc gave me a death sentence. He told me I had disautonomia and to get every book on it and that people usually survive 7years from diagnosis. The death sentence made no sense…unless he thought I would have multiple system atrophy (Shy Drager Syndrome).

So finally in 2008, I got a steady job and health insurance. I told my PCP I had clinically expedienced scleroderma attributes-so he sent me to a rheum, who also connected me to a GI specialist.

I ened up at a clinic focused on arthritis. I was treated for muscle pain/arthralgias and in 2011 got a SLE (LUPUS) diagnosis. i was started on Benlysta infusions in 2011.

i ended 2014 with a month long upper respiratory infection. Thenthe slide continued-about 3 months of vomiting, interspersedvwit periodic incontinence. i moved GI care to a local teaching hospital. 5 months later I moved primary care there. 4 months later moved rheumatology care too, and gained other specialists.

But here’s the problem-my care became very distributed-specialist silos. No one looking at the whole me.

Docs unwound the scariest meds-metotrexate,nuvigil. And…with the opiod abuse crisis abundant, no one would own my Butrans patch. So I quit cold turkey.

So here I am today with a list of diagnoses, using udifferentiated connective tissue disease as a catchall that would be worse jargon than lupus, scleroderma, etc…which urgent cares and ERs dont always recognize half the time.

My eyes started giving me trouble over last 4 months. I had inflamation of my eye orbitals and slight bulge. Endocrinology Evaluated for Graves- but it is not. One test, TPO had positive antibodies at 35. The standard is 60 to treat positively…but Mayo uses 9 Um/L. So inside I still wonder if I have Hashimoto Thyroiditis. Alternatively I asked my eye doc about Myasthenia Gravis. I tested positive for 1 of 3 tests. So he said I had it. But Nurologist said binding antibodies were okay (top of okay range).

And here I am, in a mire of chemicals, with no real effort to stop sliding worse. struggling to understand my conditions and feeling like I am getting worse. i have EMG next week and pray for real results. Last EMG, the doc said, even if you have MS what are you going to do?

My chiro said reach out-stop the downward spiral.I am on too many medicines and how can we know what is working. I feel like going off ben.ysta infusions was a mistame and now I have all this eye trouble and physically feel a downward slide with muscle weakness, falls, imbalance.

So this is my story-how do I get better so I can function safely at work. Are my diagnoses right or am I a bunch of unrelated puzzle lieces requiring lots of meds and still spinning downward. Have we done all the right tests? God i am waiting to hear ypur illness is all in your head…while my heart says I am too young to be giving up-bit I have fought illness my whole 52 year life (4 years past my expiration date).

Thank you for hearing my story. I feel my experience is just like many others…we just want to be understood and recover to enjoy life fully..

Jump to this post

I appreciate all this feedback lots…and I was talking about hair thinning, but somehow missed being clear-my skull is okay.

I just had a friend tell me “put me first’ as emergency contact and send doctor list, meds, wishes…finding a true emergency contact is hard-this friend made it easy..

Yes, I will talk to neurologist about all the falls, etc.

I have a walker because of all the falls-I got it earlier this week.

I am going to read that link you sent on adrenal insufficiency- some of my earlier ER events may have benefited from knowing insufficiency was an issue.I truly feel if I had been tested long ago, this would have been identified.

I have medalert I keep my cell with me always and car has onstar. i have security system with quck paramedic alert. My falls all seem to have had a syncope feel so I will follow-up.

Thank you so much for solid, organized guidance.

REPLY
@dogmamat

Hi, I am new to Mayo Connect. Tonight I had an honest chat with my chiropractor of close to seven years. He has seen my illness progression with care at least 1ce a week. The discussion went-Terri you are getting worse despite all the specialists and many tests that don’t show anything wrong. My definitive tests are low cortisol/Adrenal insufficiency; extremely high anti centromere ANA; a tiny sacral fracture at s4; L4/L5 disc herniation, Raynauds, GERD. I suffer from small intestine bacterial overgrowth. I need to have my esophagus stretched periodically. I have glaucoma, nystagmus. i have mild obstructive and central sleep apnea.

I am on 20 medications, cpap, have started using a walker (prior I had a cane).

I have fallen 4x since early July-with falls that have resulted in my sacral fracture and earler this week one deeply scraped knee. I have had trouble feeling the upper half of my feet since winter.

So now a step back. My health history from a baby was one of chronic infections and clumsiness(falls) that resulted in trying ballet school to give me my lacking gracefulness. Unfortunately I was bound to be someone who would fall….college field trip to Costa Rica and I met the earth many times…3x in 2 weeks. Pre-med students said I needed eval of my ears. I actually almost lost my hearing due to a major infection before I graduated. Grad school I had signs of POTS as I found my tressured references hidden on bottom book shelves. Walks around campus Ivwould periodically fall-sometimes alone,sometimes to the disbelief of professors and colleagues.

Through grad school I would have crouppy respiratory infections. Every 6 weeks like clockwork i needed antibiotics. At home, roommates would complain my hair was everywhere. ivwas always losing hair. Colleagues thought I was anorexic when I truly was eating.

Then I graduated and entered the work force paper thin, and really sick, without a clue of what was wrong. The next ten years were tough. I was lucky to last a year at jobs. I would quit because the physical-ness or stress just shut me down. Those years I didn’t have insurance; pre-existing conditions were a factor when I tried to get insurance.

Beginning in 2004, my life really changed. i almost died of bowel obstruction/stenotic lesion. Then every 2-3 years I kept landing in the ER- PE /heart attack fear that turned out to be GERD-but they gave me coumadin to be safe; ischemic colitis which was initially called hemorrhoids; and severe muscle spasms.

In 2005, a pain management doc gave me a death sentence. He told me I had disautonomia and to get every book on it and that people usually survive 7years from diagnosis. The death sentence made no sense…unless he thought I would have multiple system atrophy (Shy Drager Syndrome).

So finally in 2008, I got a steady job and health insurance. I told my PCP I had clinically expedienced scleroderma attributes-so he sent me to a rheum, who also connected me to a GI specialist.

I ened up at a clinic focused on arthritis. I was treated for muscle pain/arthralgias and in 2011 got a SLE (LUPUS) diagnosis. i was started on Benlysta infusions in 2011.

i ended 2014 with a month long upper respiratory infection. Thenthe slide continued-about 3 months of vomiting, interspersedvwit periodic incontinence. i moved GI care to a local teaching hospital. 5 months later I moved primary care there. 4 months later moved rheumatology care too, and gained other specialists.

But here’s the problem-my care became very distributed-specialist silos. No one looking at the whole me.

Docs unwound the scariest meds-metotrexate,nuvigil. And…with the opiod abuse crisis abundant, no one would own my Butrans patch. So I quit cold turkey.

So here I am today with a list of diagnoses, using udifferentiated connective tissue disease as a catchall that would be worse jargon than lupus, scleroderma, etc…which urgent cares and ERs dont always recognize half the time.

My eyes started giving me trouble over last 4 months. I had inflamation of my eye orbitals and slight bulge. Endocrinology Evaluated for Graves- but it is not. One test, TPO had positive antibodies at 35. The standard is 60 to treat positively…but Mayo uses 9 Um/L. So inside I still wonder if I have Hashimoto Thyroiditis. Alternatively I asked my eye doc about Myasthenia Gravis. I tested positive for 1 of 3 tests. So he said I had it. But Nurologist said binding antibodies were okay (top of okay range).

And here I am, in a mire of chemicals, with no real effort to stop sliding worse. struggling to understand my conditions and feeling like I am getting worse. i have EMG next week and pray for real results. Last EMG, the doc said, even if you have MS what are you going to do?

My chiro said reach out-stop the downward spiral.I am on too many medicines and how can we know what is working. I feel like going off ben.ysta infusions was a mistame and now I have all this eye trouble and physically feel a downward slide with muscle weakness, falls, imbalance.

So this is my story-how do I get better so I can function safely at work. Are my diagnoses right or am I a bunch of unrelated puzzle lieces requiring lots of meds and still spinning downward. Have we done all the right tests? God i am waiting to hear ypur illness is all in your head…while my heart says I am too young to be giving up-bit I have fought illness my whole 52 year life (4 years past my expiration date).

Thank you for hearing my story. I feel my experience is just like many others…we just want to be understood and recover to enjoy life fully..

Jump to this post

Well that’s great! Thought so about the hair but had to ask.
Good that the friend stepped up. Hang on to that one.
Remember to ask the neuro about connecting the rest of your care to a single clinic, or 2 at most if possible. Easier to pare down the meds, if possible.
One tipoff re primary adrenal insufficiency is hyper-pigmentation in some areas, hands and elbows I think. You’ll see a note about it.

Glad I could help. Good luck and keep us updated.

REPLY
@johnwburns

Don’t give up. There is always a little bit more that can be checked, a fresh set of eyes could make the difference. Have you had an expert work up by a rheumatologist/immunologist? Have the basic autoimmune markers like ANA been checked and inflammation or lack of it noted? I can’t pretend that I would catch anything that all of these experts have missed. I’ve heard of strange syndromes following an infection like:

http://www.ninds.nih.gov/disorders/gbs/detail_gbs.htm

but there are less obscure things that can cause strange overlapping symptoms, like Lyme Disease.

If you haven’t seen an rheumatologist/immunologist put that next on your list. If you have, you might want him/her to check for more antibodies. I was very sick for several years and kept going to the doctor and complaining about it. They ran lots of blood work and found nothing other than mild anemia and that I carried HLA-B27. I started having episodes of freezing, shaking and weakness lasting several hours. Eventually I collapsed in the waiting room and when I was admitted into the hospital they ran some tests and told me that I had Grave’s disease and was experiencing thyroid storm. Not a parallel with you but the point is that I bugged them for several years and it turns out they never ran thyroid tests until I almost dropped dead. Even good doctors can have a blind spot so you have to be a squeaky wheel, unpleasant s it may be. Hang in there.

Jump to this post

Thanks again for your reply. I have been on prednisone several times and each time my condition clears up. I am feeling very frustrated right now. I am dealing with some diverticulitis, a mild case, but I have had Levanquin and flaghl added on to the pills I take. I take 10 pills throughout the day. This assures that I have an upset stomach all day. Sorry for the wining.

REPLY
@dogmamat

Hi, I am new to Mayo Connect. Tonight I had an honest chat with my chiropractor of close to seven years. He has seen my illness progression with care at least 1ce a week. The discussion went-Terri you are getting worse despite all the specialists and many tests that don’t show anything wrong. My definitive tests are low cortisol/Adrenal insufficiency; extremely high anti centromere ANA; a tiny sacral fracture at s4; L4/L5 disc herniation, Raynauds, GERD. I suffer from small intestine bacterial overgrowth. I need to have my esophagus stretched periodically. I have glaucoma, nystagmus. i have mild obstructive and central sleep apnea.

I am on 20 medications, cpap, have started using a walker (prior I had a cane).

I have fallen 4x since early July-with falls that have resulted in my sacral fracture and earler this week one deeply scraped knee. I have had trouble feeling the upper half of my feet since winter.

So now a step back. My health history from a baby was one of chronic infections and clumsiness(falls) that resulted in trying ballet school to give me my lacking gracefulness. Unfortunately I was bound to be someone who would fall….college field trip to Costa Rica and I met the earth many times…3x in 2 weeks. Pre-med students said I needed eval of my ears. I actually almost lost my hearing due to a major infection before I graduated. Grad school I had signs of POTS as I found my tressured references hidden on bottom book shelves. Walks around campus Ivwould periodically fall-sometimes alone,sometimes to the disbelief of professors and colleagues.

Through grad school I would have crouppy respiratory infections. Every 6 weeks like clockwork i needed antibiotics. At home, roommates would complain my hair was everywhere. ivwas always losing hair. Colleagues thought I was anorexic when I truly was eating.

Then I graduated and entered the work force paper thin, and really sick, without a clue of what was wrong. The next ten years were tough. I was lucky to last a year at jobs. I would quit because the physical-ness or stress just shut me down. Those years I didn’t have insurance; pre-existing conditions were a factor when I tried to get insurance.

Beginning in 2004, my life really changed. i almost died of bowel obstruction/stenotic lesion. Then every 2-3 years I kept landing in the ER- PE /heart attack fear that turned out to be GERD-but they gave me coumadin to be safe; ischemic colitis which was initially called hemorrhoids; and severe muscle spasms.

In 2005, a pain management doc gave me a death sentence. He told me I had disautonomia and to get every book on it and that people usually survive 7years from diagnosis. The death sentence made no sense…unless he thought I would have multiple system atrophy (Shy Drager Syndrome).

So finally in 2008, I got a steady job and health insurance. I told my PCP I had clinically expedienced scleroderma attributes-so he sent me to a rheum, who also connected me to a GI specialist.

I ened up at a clinic focused on arthritis. I was treated for muscle pain/arthralgias and in 2011 got a SLE (LUPUS) diagnosis. i was started on Benlysta infusions in 2011.

i ended 2014 with a month long upper respiratory infection. Thenthe slide continued-about 3 months of vomiting, interspersedvwit periodic incontinence. i moved GI care to a local teaching hospital. 5 months later I moved primary care there. 4 months later moved rheumatology care too, and gained other specialists.

But here’s the problem-my care became very distributed-specialist silos. No one looking at the whole me.

Docs unwound the scariest meds-metotrexate,nuvigil. And…with the opiod abuse crisis abundant, no one would own my Butrans patch. So I quit cold turkey.

So here I am today with a list of diagnoses, using udifferentiated connective tissue disease as a catchall that would be worse jargon than lupus, scleroderma, etc…which urgent cares and ERs dont always recognize half the time.

My eyes started giving me trouble over last 4 months. I had inflamation of my eye orbitals and slight bulge. Endocrinology Evaluated for Graves- but it is not. One test, TPO had positive antibodies at 35. The standard is 60 to treat positively…but Mayo uses 9 Um/L. So inside I still wonder if I have Hashimoto Thyroiditis. Alternatively I asked my eye doc about Myasthenia Gravis. I tested positive for 1 of 3 tests. So he said I had it. But Nurologist said binding antibodies were okay (top of okay range).

And here I am, in a mire of chemicals, with no real effort to stop sliding worse. struggling to understand my conditions and feeling like I am getting worse. i have EMG next week and pray for real results. Last EMG, the doc said, even if you have MS what are you going to do?

My chiro said reach out-stop the downward spiral.I am on too many medicines and how can we know what is working. I feel like going off ben.ysta infusions was a mistame and now I have all this eye trouble and physically feel a downward slide with muscle weakness, falls, imbalance.

So this is my story-how do I get better so I can function safely at work. Are my diagnoses right or am I a bunch of unrelated puzzle lieces requiring lots of meds and still spinning downward. Have we done all the right tests? God i am waiting to hear ypur illness is all in your head…while my heart says I am too young to be giving up-bit I have fought illness my whole 52 year life (4 years past my expiration date).

Thank you for hearing my story. I feel my experience is just like many others…we just want to be understood and recover to enjoy life fully..

Jump to this post

Please go to Mayo. I cannot say enough about their diagnostic procedures. Mayo’s has a team approach so all your concerns and problems would be addressed.

REPLY
@dogmamat

Hi, I am new to Mayo Connect. Tonight I had an honest chat with my chiropractor of close to seven years. He has seen my illness progression with care at least 1ce a week. The discussion went-Terri you are getting worse despite all the specialists and many tests that don’t show anything wrong. My definitive tests are low cortisol/Adrenal insufficiency; extremely high anti centromere ANA; a tiny sacral fracture at s4; L4/L5 disc herniation, Raynauds, GERD. I suffer from small intestine bacterial overgrowth. I need to have my esophagus stretched periodically. I have glaucoma, nystagmus. i have mild obstructive and central sleep apnea.

I am on 20 medications, cpap, have started using a walker (prior I had a cane).

I have fallen 4x since early July-with falls that have resulted in my sacral fracture and earler this week one deeply scraped knee. I have had trouble feeling the upper half of my feet since winter.

So now a step back. My health history from a baby was one of chronic infections and clumsiness(falls) that resulted in trying ballet school to give me my lacking gracefulness. Unfortunately I was bound to be someone who would fall….college field trip to Costa Rica and I met the earth many times…3x in 2 weeks. Pre-med students said I needed eval of my ears. I actually almost lost my hearing due to a major infection before I graduated. Grad school I had signs of POTS as I found my tressured references hidden on bottom book shelves. Walks around campus Ivwould periodically fall-sometimes alone,sometimes to the disbelief of professors and colleagues.

Through grad school I would have crouppy respiratory infections. Every 6 weeks like clockwork i needed antibiotics. At home, roommates would complain my hair was everywhere. ivwas always losing hair. Colleagues thought I was anorexic when I truly was eating.

Then I graduated and entered the work force paper thin, and really sick, without a clue of what was wrong. The next ten years were tough. I was lucky to last a year at jobs. I would quit because the physical-ness or stress just shut me down. Those years I didn’t have insurance; pre-existing conditions were a factor when I tried to get insurance.

Beginning in 2004, my life really changed. i almost died of bowel obstruction/stenotic lesion. Then every 2-3 years I kept landing in the ER- PE /heart attack fear that turned out to be GERD-but they gave me coumadin to be safe; ischemic colitis which was initially called hemorrhoids; and severe muscle spasms.

In 2005, a pain management doc gave me a death sentence. He told me I had disautonomia and to get every book on it and that people usually survive 7years from diagnosis. The death sentence made no sense…unless he thought I would have multiple system atrophy (Shy Drager Syndrome).

So finally in 2008, I got a steady job and health insurance. I told my PCP I had clinically expedienced scleroderma attributes-so he sent me to a rheum, who also connected me to a GI specialist.

I ened up at a clinic focused on arthritis. I was treated for muscle pain/arthralgias and in 2011 got a SLE (LUPUS) diagnosis. i was started on Benlysta infusions in 2011.

i ended 2014 with a month long upper respiratory infection. Thenthe slide continued-about 3 months of vomiting, interspersedvwit periodic incontinence. i moved GI care to a local teaching hospital. 5 months later I moved primary care there. 4 months later moved rheumatology care too, and gained other specialists.

But here’s the problem-my care became very distributed-specialist silos. No one looking at the whole me.

Docs unwound the scariest meds-metotrexate,nuvigil. And…with the opiod abuse crisis abundant, no one would own my Butrans patch. So I quit cold turkey.

So here I am today with a list of diagnoses, using udifferentiated connective tissue disease as a catchall that would be worse jargon than lupus, scleroderma, etc…which urgent cares and ERs dont always recognize half the time.

My eyes started giving me trouble over last 4 months. I had inflamation of my eye orbitals and slight bulge. Endocrinology Evaluated for Graves- but it is not. One test, TPO had positive antibodies at 35. The standard is 60 to treat positively…but Mayo uses 9 Um/L. So inside I still wonder if I have Hashimoto Thyroiditis. Alternatively I asked my eye doc about Myasthenia Gravis. I tested positive for 1 of 3 tests. So he said I had it. But Nurologist said binding antibodies were okay (top of okay range).

And here I am, in a mire of chemicals, with no real effort to stop sliding worse. struggling to understand my conditions and feeling like I am getting worse. i have EMG next week and pray for real results. Last EMG, the doc said, even if you have MS what are you going to do?

My chiro said reach out-stop the downward spiral.I am on too many medicines and how can we know what is working. I feel like going off ben.ysta infusions was a mistame and now I have all this eye trouble and physically feel a downward slide with muscle weakness, falls, imbalance.

So this is my story-how do I get better so I can function safely at work. Are my diagnoses right or am I a bunch of unrelated puzzle lieces requiring lots of meds and still spinning downward. Have we done all the right tests? God i am waiting to hear ypur illness is all in your head…while my heart says I am too young to be giving up-bit I have fought illness my whole 52 year life (4 years past my expiration date).

Thank you for hearing my story. I feel my experience is just like many others…we just want to be understood and recover to enjoy life fully..

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@dogmamat here is the contact information for all 3 campuses of Mayo Clinic http://mayocl.in/1mtmR63. You can inquire about consultation and they will work with your current care providers.

Like @johnwburns, it’s good to know that you have such a friend and that you safety measures in place like the medicalert bracelet, your cell and onstar.

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@johnwburns

Don’t give up. There is always a little bit more that can be checked, a fresh set of eyes could make the difference. Have you had an expert work up by a rheumatologist/immunologist? Have the basic autoimmune markers like ANA been checked and inflammation or lack of it noted? I can’t pretend that I would catch anything that all of these experts have missed. I’ve heard of strange syndromes following an infection like:

http://www.ninds.nih.gov/disorders/gbs/detail_gbs.htm

but there are less obscure things that can cause strange overlapping symptoms, like Lyme Disease.

If you haven’t seen an rheumatologist/immunologist put that next on your list. If you have, you might want him/her to check for more antibodies. I was very sick for several years and kept going to the doctor and complaining about it. They ran lots of blood work and found nothing other than mild anemia and that I carried HLA-B27. I started having episodes of freezing, shaking and weakness lasting several hours. Eventually I collapsed in the waiting room and when I was admitted into the hospital they ran some tests and told me that I had Grave’s disease and was experiencing thyroid storm. Not a parallel with you but the point is that I bugged them for several years and it turns out they never ran thyroid tests until I almost dropped dead. Even good doctors can have a blind spot so you have to be a squeaky wheel, unpleasant s it may be. Hang in there.

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Don’t worry about complaining. Being stuck with a condition that seems to be unpredictable and mysterious, as autoimmune conditions often can be, is vexing and can easily draw a person into preoccupation. That seems to me to be a rational response.
You say that you have been on prednisone off and on, do you mean a prednisone titer starting at a high dose and tapering, or s steady dose for an extended period? When you say that your ‘condition’ clears up during prednisone, what are the primary symptoms that clear up?
I take it that after reviewing the lab tests I provided you didn’t see any pattern that matched what you experience, like a positive anti-sm, or some positive markers for mixed connective tissue disease, which can affect multiple systems?

http://emedicine.medscape.com/article/335815-workup

Sorry if some questions are redundant. I’m not trying to diagnose this. I’m not qualified to do that. Just trying to narrow down.

Since prednisone helps intermittently, are you on weaker anti-inflammatories, such as nsaids, on a regular basis?

The doctor never said explicitly why he put you on plaquenil? If not, you may want to ask.

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@johnwburns

Don’t give up. There is always a little bit more that can be checked, a fresh set of eyes could make the difference. Have you had an expert work up by a rheumatologist/immunologist? Have the basic autoimmune markers like ANA been checked and inflammation or lack of it noted? I can’t pretend that I would catch anything that all of these experts have missed. I’ve heard of strange syndromes following an infection like:

http://www.ninds.nih.gov/disorders/gbs/detail_gbs.htm

but there are less obscure things that can cause strange overlapping symptoms, like Lyme Disease.

If you haven’t seen an rheumatologist/immunologist put that next on your list. If you have, you might want him/her to check for more antibodies. I was very sick for several years and kept going to the doctor and complaining about it. They ran lots of blood work and found nothing other than mild anemia and that I carried HLA-B27. I started having episodes of freezing, shaking and weakness lasting several hours. Eventually I collapsed in the waiting room and when I was admitted into the hospital they ran some tests and told me that I had Grave’s disease and was experiencing thyroid storm. Not a parallel with you but the point is that I bugged them for several years and it turns out they never ran thyroid tests until I almost dropped dead. Even good doctors can have a blind spot so you have to be a squeaky wheel, unpleasant s it may be. Hang in there.

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Here is the whole story. I have had sinus allergies and mild asthma my entire life. I have gone through 5 sinus surgeries. I have been tested by multiple allergist who said all test come up negative, diagnosis is nonallergic rhianitis. About 5 years ago my dentist notice white lesions on my gums. I saw a specialist and he said it was not cancer but a autoimmune disease. It is mostly there all the time ,but it seems like if I get a bad cold it flares up. 3 years ago I started to lose hearing in right ear along with some dizzyness and ringing. My ENT put me on 50 mg. of prednisone for two weeks. Things got worse and was making me loose weight and not helping the problem. He then reduced the dosage to 30 mgs. for three more weeks. This didn’t help either. I then went to UT Southwestern where I was given 10 mgs. of decodron shot directly through my ear drum once a week. Within a month I was cured. The doctor thought it was a virus.
I started to notice a lack of energy, so I got my adrenal glands tested. It showed I had secondary adrenal insufficiency. It took close to a year, but an endocrinologist got them back and working. I noticed while on this long tapper of prednisone that at 7.5 mgs. I felt great. I have since had my adrenal glands test and the test come up normal.
I have also had L5 lamentomy, got bit by a neighbors dog ,had arm infected, ended up. in hospital 3 days for around the clock antibiotics. I then had rotator cuff surgery due to dog bit.
I have diverticulitis at this time an on Levanquin and flaghl. All my joints ache and I am fatigued all the time. If I am out in the sun I get tired pretty quickly which last the entire day.
No rash but burn easily.
Did I mention I have Hasimotes disease
(Autoimmune panel):Showed borderline positive ANA (nonspecific autoimmune marker),panel results is in moderate positive for lupus range although all lupus specific markers are negative.
Celiac panel negative
HLA B27
Did I tell you I worked on the Fire Dept. for 28 years as a captain. A friend of mine use to work for the military thought I might have PTSD syndrome. I thought she was nuts, but it turns out police and fire are subject to it.
That’s all folks

Thanks for all your thoughts

REPLY
@johnwburns

Don’t give up. There is always a little bit more that can be checked, a fresh set of eyes could make the difference. Have you had an expert work up by a rheumatologist/immunologist? Have the basic autoimmune markers like ANA been checked and inflammation or lack of it noted? I can’t pretend that I would catch anything that all of these experts have missed. I’ve heard of strange syndromes following an infection like:

http://www.ninds.nih.gov/disorders/gbs/detail_gbs.htm

but there are less obscure things that can cause strange overlapping symptoms, like Lyme Disease.

If you haven’t seen an rheumatologist/immunologist put that next on your list. If you have, you might want him/her to check for more antibodies. I was very sick for several years and kept going to the doctor and complaining about it. They ran lots of blood work and found nothing other than mild anemia and that I carried HLA-B27. I started having episodes of freezing, shaking and weakness lasting several hours. Eventually I collapsed in the waiting room and when I was admitted into the hospital they ran some tests and told me that I had Grave’s disease and was experiencing thyroid storm. Not a parallel with you but the point is that I bugged them for several years and it turns out they never ran thyroid tests until I almost dropped dead. Even good doctors can have a blind spot so you have to be a squeaky wheel, unpleasant s it may be. Hang in there.

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Sorry to heŕe that I also have auto imune disease when I am not fealing
good I know its that.I hope you feal well soon

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I’ve struggled with many multi-system symptoms. I have been given a diagnosis for some (autoimmune: antiphospholipid antibody syndrome- causing a stroke, hypothyroidism, conversion disorder(eyes), depression, anxiety, OCD, arthritis (multiple joints), carpal tunnel syndrome…
Others remain a mystery.
All of the above, plus all my undiagnosed conditions (urinary incontinence, extreme fatigue, fainting, nausea, vomiting, pins and needles of both hands, sweats…) fall under the umbrella of chronic Lyme, or as the medical community calls it:
Post Treatment Lyme Disease Syndrome. (Still true if you were never treated) For me the Lyme disease (and bartonella, babesia ) diagnosis was the connecting thread. Lyme is called the “great imitator”.
As already said, each of my specialists looked at his or her body part. No one looked at the big picture.
The current blood tests for Lyme are generally unreliable, making it difficult to diagnose. Many doctors too, are unfamiliar with the condition. I am not trying to diagnose you as I am not qualified, but perhaps Lyme or another tick borne disease should not be overlooked. May I suggest the ILADS website (sorry I don’t know how to add a link here -cognitive -memory problems as well)
Good luck I hope you can find some answers.

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@soitis4590

I’ve struggled with many multi-system symptoms. I have been given a diagnosis for some (autoimmune: antiphospholipid antibody syndrome- causing a stroke, hypothyroidism, conversion disorder(eyes), depression, anxiety, OCD, arthritis (multiple joints), carpal tunnel syndrome…
Others remain a mystery.
All of the above, plus all my undiagnosed conditions (urinary incontinence, extreme fatigue, fainting, nausea, vomiting, pins and needles of both hands, sweats…) fall under the umbrella of chronic Lyme, or as the medical community calls it:
Post Treatment Lyme Disease Syndrome. (Still true if you were never treated) For me the Lyme disease (and bartonella, babesia ) diagnosis was the connecting thread. Lyme is called the “great imitator”.
As already said, each of my specialists looked at his or her body part. No one looked at the big picture.
The current blood tests for Lyme are generally unreliable, making it difficult to diagnose. Many doctors too, are unfamiliar with the condition. I am not trying to diagnose you as I am not qualified, but perhaps Lyme or another tick borne disease should not be overlooked. May I suggest the ILADS website (sorry I don’t know how to add a link here -cognitive -memory problems as well)
Good luck I hope you can find some answers.

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Thanks much. I grew up in Lyme country and once in a while I think abput this.

It is also ironic that I am on anti malarial, given I spent 6 summers getting bit by mosquitos in the subarctic.

This weekend I learned I am B6 deficient, which is an indication of inflammation and can cause bot muscle and nerve pain. I started on B6 today and hope it helps. All my joints are worse tthan usual, as well as my neuropathy.

I send best wishes on your diagnosis journey. It seems sometimes that only alternative health providers look at people more holistically.

Kind regards

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@soitis4590

I’ve struggled with many multi-system symptoms. I have been given a diagnosis for some (autoimmune: antiphospholipid antibody syndrome- causing a stroke, hypothyroidism, conversion disorder(eyes), depression, anxiety, OCD, arthritis (multiple joints), carpal tunnel syndrome…
Others remain a mystery.
All of the above, plus all my undiagnosed conditions (urinary incontinence, extreme fatigue, fainting, nausea, vomiting, pins and needles of both hands, sweats…) fall under the umbrella of chronic Lyme, or as the medical community calls it:
Post Treatment Lyme Disease Syndrome. (Still true if you were never treated) For me the Lyme disease (and bartonella, babesia ) diagnosis was the connecting thread. Lyme is called the “great imitator”.
As already said, each of my specialists looked at his or her body part. No one looked at the big picture.
The current blood tests for Lyme are generally unreliable, making it difficult to diagnose. Many doctors too, are unfamiliar with the condition. I am not trying to diagnose you as I am not qualified, but perhaps Lyme or another tick borne disease should not be overlooked. May I suggest the ILADS website (sorry I don’t know how to add a link here -cognitive -memory problems as well)
Good luck I hope you can find some answers.

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Sorry to hear about your massive, daunting challenges.
I have a question about some of the wording: Are you saying that the antiphospholipid antibody syndrome was concurrent with the other listed conditions, caused them, or was a consequence of Lyme Disease? Curious since antiphospholipids show up in autoimmunity as a co-factor a lot, as you likely know.
I know personally one man who went through a maze of issues as broad as what you list and was eventually diagnosed with advanced Lyme. It probably does not have have a high enough profile. What treatment are you on if I may ask?

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Oops, just lost my reply. Let me try again…in answer to your questions: I was first diagnosed with Lyme in 1994, then again in 1999 ( with an EM rash this time). I was never adequately treated. My symptoms continued. I was also diagnosed in 1999 with cat scratch fever. (So bartonella) the ID did not treat me for it. In 2001 I had a stroke which led to the diagnoses of APS. Then, it was a progression of multi-system symptoms until now. As I am on Coumadin for the clotting problem, I cannot use antibiotics (though I wouldn’t anyway) I am seeing a naturopath and going to a Lyme clinic here in CT. I am also trying ton following an anti imflammatory diet- no dairy, sugar or carbs. As many herbals are blood thinners, I am having to go very slowly. Just this week, I have started bruising a lot and bleeding some. I need to back off on my treatment. In a month of this treatment however, I had little or no pain in my hands and wrists. This is the first time in many, many years. Though it was only lasted 9 days- it IS possible! I am hopeful despite this road block. A friend has improved significantly from her advanced Lyme using alternative medicine. She was first on antibiotics for 2 years with no improvement. I hope this answers your questions. I do know it is impossible to actually prove that all my medical issues are from advanced Lyme (bartonella/ babsia). I had a positive western blot 2 years ago, though my PCP thought it was a false positive. It does explain all of my,conditions though- the diagnosed and undiagnosed. All have been shown to be a result of Lyme. Now a question for you… I am trying to deal with my chronic pain (primarily arthritis) using electrical stimulation, yoga, accupuncture ( really helps), mindfulness/meditation and exercise as tolerated. For my knee -it aggravates the torn meniscus. I am new to these techniques and also going broke. I’m just starting this journey to health. Any other ideas for the chronic pain? Thanks for your interest.

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@soitis4590

Oops, just lost my reply. Let me try again…in answer to your questions: I was first diagnosed with Lyme in 1994, then again in 1999 ( with an EM rash this time). I was never adequately treated. My symptoms continued. I was also diagnosed in 1999 with cat scratch fever. (So bartonella) the ID did not treat me for it. In 2001 I had a stroke which led to the diagnoses of APS. Then, it was a progression of multi-system symptoms until now. As I am on Coumadin for the clotting problem, I cannot use antibiotics (though I wouldn’t anyway) I am seeing a naturopath and going to a Lyme clinic here in CT. I am also trying ton following an anti imflammatory diet- no dairy, sugar or carbs. As many herbals are blood thinners, I am having to go very slowly. Just this week, I have started bruising a lot and bleeding some. I need to back off on my treatment. In a month of this treatment however, I had little or no pain in my hands and wrists. This is the first time in many, many years. Though it was only lasted 9 days- it IS possible! I am hopeful despite this road block. A friend has improved significantly from her advanced Lyme using alternative medicine. She was first on antibiotics for 2 years with no improvement. I hope this answers your questions. I do know it is impossible to actually prove that all my medical issues are from advanced Lyme (bartonella/ babsia). I had a positive western blot 2 years ago, though my PCP thought it was a false positive. It does explain all of my,conditions though- the diagnosed and undiagnosed. All have been shown to be a result of Lyme. Now a question for you… I am trying to deal with my chronic pain (primarily arthritis) using electrical stimulation, yoga, accupuncture ( really helps), mindfulness/meditation and exercise as tolerated. For my knee -it aggravates the torn meniscus. I am new to these techniques and also going broke. I’m just starting this journey to health. Any other ideas for the chronic pain? Thanks for your interest.

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You say that you “can’t use antibiotics” and “wouldn’t anyway”. May I ask why you can’t? Not questioning you but that seems to put you in a bad spot as far as treating the Lyme. The antibiotic recommendations for treatment seem to be pretty modest with the potential payoffs huge.

http://emedicine.medscape.com/article/330178-treatment

The issue with herbal treatments is that the contents of the medicines given are not FDA regulated so you really don’t know what you’re getting. Another issue is that it is harder to predict and evaluate relationships and possible conflicts between the supplements that you are taking. Are you seeing a mainstream medical practitioner as well as the naturopath for blood work?

Antiphospholipid syndrome often occurs along with some autoimmune disorders like Lupus or Sjogren’s. Have you have a good workup for either of those?

Just trying to cover the bases.

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@soitis4590

Oops, just lost my reply. Let me try again…in answer to your questions: I was first diagnosed with Lyme in 1994, then again in 1999 ( with an EM rash this time). I was never adequately treated. My symptoms continued. I was also diagnosed in 1999 with cat scratch fever. (So bartonella) the ID did not treat me for it. In 2001 I had a stroke which led to the diagnoses of APS. Then, it was a progression of multi-system symptoms until now. As I am on Coumadin for the clotting problem, I cannot use antibiotics (though I wouldn’t anyway) I am seeing a naturopath and going to a Lyme clinic here in CT. I am also trying ton following an anti imflammatory diet- no dairy, sugar or carbs. As many herbals are blood thinners, I am having to go very slowly. Just this week, I have started bruising a lot and bleeding some. I need to back off on my treatment. In a month of this treatment however, I had little or no pain in my hands and wrists. This is the first time in many, many years. Though it was only lasted 9 days- it IS possible! I am hopeful despite this road block. A friend has improved significantly from her advanced Lyme using alternative medicine. She was first on antibiotics for 2 years with no improvement. I hope this answers your questions. I do know it is impossible to actually prove that all my medical issues are from advanced Lyme (bartonella/ babsia). I had a positive western blot 2 years ago, though my PCP thought it was a false positive. It does explain all of my,conditions though- the diagnosed and undiagnosed. All have been shown to be a result of Lyme. Now a question for you… I am trying to deal with my chronic pain (primarily arthritis) using electrical stimulation, yoga, accupuncture ( really helps), mindfulness/meditation and exercise as tolerated. For my knee -it aggravates the torn meniscus. I am new to these techniques and also going broke. I’m just starting this journey to health. Any other ideas for the chronic pain? Thanks for your interest.

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Hello again, As I am taking Coumadin, the recommended antibiotic protocol includes those which interact warfarin causing increase blood thinning. ( As many antibiotics and NSAIDS do) I realize that the herbals do too, and less is known about interactions and quality there. It has been shown in clinical trials ,however, that PTLDS does not respond to treatment with antibiotics.
I do see a conventional doctor every 10 days to 4 weeks for blood work. Depending on
my INR and dose change, if any.
I was diagnosed with Lupus in 2014. When I went for a second opinion, this doc used a newer blood test (Exagen I believe -then again maybe not?) ) and it came back negative for RA, Lupus and Sjogrens. At the time my mouth was so dry I could no longer swallow food. A lip biopsy also came back negative for Sjogrens. As antibiotics are difficult to use with Coumadin (yes, herbals too) and they haven’t been shown to be effective, I have chosen the alternate route. I have seen success first hand with the alternative medicine approach. Though each person is different. For me it is a matter of educating myself, weighing the risks against benefits and then deciding my course of action. With so much controversy about its existence and with such murkiness surrounding advanced Lyme, it has been difficult to sort out the facts, the science. Thank you for asking those questions. It helps me focus and evaluate what I am choosing to do.

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