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.

@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.

Jump to this post

Whatever works for you.
Would you share what alternative treatments you’ve seen produce successful results for PTLDS? Always room for new ideas.

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 am having a day. I have been feeling under and weak. I feel like my new
rheumatologist don’t grasp what it means to live with low cortisol. I also
am having a hard time because they are saying the lupus is not
active…then I go to Neurologist who feels preliminarily that my
neuropathy is secondary to my lupus rheumatological state and prednisone…

I can’t rationalize working with them when I have been experiencing falls
from weakness, lack of proper feeling in my feet and, it almost feels like
syncope is a factor too. I feel like I need a medical referee. I am tired
of having to hold doctors feet to the fire and am at the point of not
trusting rheumatology as a discipline. It seems terribly subjective and
lacking good diagnostics.

I am ready to shift care after 7 months. The trend of compartmentalization
of care is dangerous..I have scripts from 6+ doctors and no one is watching
how they all interact even with most docs being in 1 institution!

I want to work, but honestly, it was bad enough using a cane. Can you
imagine me showing up with a walker for an interview? And I hear from one
company, wanting a 6am interview (I never heard my alarm and just heard my
vibrating silenced phone (interviewer). I was told when I am ready to do
50% travel they would be happy to try to hire me…

I feel the deck is stacked against me. Expensive medical care that doesn’t
leave me functional to work in my profession of 9 years…

Just feeling lost…

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’m kind of reading between the lines but its seems like you blame most of your feelings of illness/incapacity on low cortisol. That is easy snout to quantify with a set of tests that I think that I’ve already shared. But, you are on prednisone so that will skew any testing. If you are on prednisone, your low cortisol is being treated so do you think that it is not being treated adequately? This is kind of an important thing because if you are being over treated with prednisone your own adrenals will shut off, permanently possibly. It varies by individual.

Right, remove the compartmentalization so the rheumatologist and neurologist are under the same tent and share information directly. I don’t know who else you see but these seem to be the primary areas you bring up as concerns. I didn’t get a proper diagnosis and treatment for Sjogren’s until I saw a lead rheumatologist and neurologist at Mayo. I had a plan within a month.

Your Lupus may or may not be in remission, quiesced. Here is a brief definition of the term.

http://www.lupus.org/answers/entry/how-is-remission-in-lupus-defined

Maybe ‘controlled’ is a better term.

So, getting thee meds evaluated and getting ket treatment collected under one treatment center seem to remain to be objectives that might improve your situation.

A chat with a social worker might not be a bad idea, regarding disability and your entire situation.

Hope this helps.

REPLY
@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.

Jump to this post

Though not strictly alternative, I have been following an anti-imflammatory diet for the good part of a year. I have eliminated dairy and have decreased carbs and sugar significantly. There is a book which I have found helpful. “Healthy Joints for Life” by Richard Diana M.D. In it he explains imflammation not only on a mechanical level but also on a cellular level. Addressing diet, supplementation and exercise.
I am also taking vitamins and supplements to support my immune system and combat imflamation. Vitamin C, D3, Omega 3, magnesium, B6, B12. There are others which are helpful though this is a combo which does not interfere with my clotting. I am also taking probiotics, and liposomal glutathione.
From the naturopath I am using MC-BB-2 to address Lyme and MC-BAR-1 to address Bartonella. Lymenosode drops and Transfer Factor LymPlus. . I have only been using these last preparations for a few months.
And, of course, a number of “traditional” medications.
For pain: mindfulness /mediation/yoga (just starting to learn these), TENS heat-cold, accupuncture (very effective), massage, distraction and exercise.
As I have had at times a decrease in joint pain using these things, I feel I must be doing something right. I keep a careful record of symptoms including things like time of day, sleep, activities, food intake, exercise, treatments, medications, my blood work results, etc. I can find nothing to indicate that my improvements are from anything else, but the alternative approach. the traditional,one i have been doing for years with no help. As well, my mood has improved, I’ve lost weight, on many nights I am sleeping much better and my energy level has improved. Yes, I still have debilitating symptoms. Though these small improvements are very encouraging. I work closely with my PCP. I have a long way to go-slowly.
I feel, It is crucial to work with a knowledgable professional (I get recommendations from friends when I can) and not take it upon myself to decide on treatments for Lyme.m I know my body better than anyone though, so if I feel it’s necessary, I will challenge and question, and I always try to communicate with them- even when they don’t listen (a sign to switch doctors) I don’t want to create further problems so, so I professionals as guides. As many have said, I have found some specialist “incompetent”, frustrating, and knowing nothing about advanced Lyme or even chronic imflamation. I get second options if I feel on any level I am not getting adequate care or a what I feel, is a questionanle/serious diagnosis. Some of these specialists don’t even know about the medications they prescribe in their own specialties. I have learned the hard way to investigate and educate myself. This is for both traditional AND the alternative approaches. Of course, exhausting, but for me , it is the quality of my life and health we’re talking about. These investigations allow me to know what questions to ask, many for me. I suggest too, ALWAYS get paper copies of your medical records. It is handy to take to new doctors., I found out through hard copies, that I had been diagnosed with Alzheimer’s disease. That was a shocker. With the number of conventional docs I see, and now alternative ones this is a full time job. Support groups and individual counseling have given me the courage to challenge and question my doctors, info about community resources and other’s experiences, along with a new perspective. As I am essentially homebound I need all this support.
Well, this was long, and I hope coherent!

REPLY

I feel your pain, I wish that there was something I could say or do to make you feel better, but I can’t. I currently am going to six different doctors. Last week I was taking ten pills a day. Bye the end of the week I never felt worse. I have been to two rheumatologist and there still not sure what is wrong. I have several good doctors at this time. One thing I found out is if they don’t take the time to listen to you, let them go and look for someone else. Always keep copies of your lab work to show your next doc. Also have you seen an endocrinologist for your low cortisol. I have been through that. It took about six months to get my levels back to normal. Not sure I said anything that you didn’t already know. Hope you start feeling better.

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

Thank you John, I hadn’t heard of quiesced. My joints are still a problem, but it is osteoarthritis, which seems not to matter. Celebrex had been helping, but right now my joints are aggravated. With falls, i have seen my CRP go up, but RA seems higher priority. i wish they would put me back on benlysta and taper me. Instead Rheum’s first words were no taking away the prednisone for you.

The neurologist I saw yesterday said the fact that my cortisol was so low may be key to my state right now…

I have a disability attorney. SSA is now reviewing all the dpctor’s notes. Tbe problem is the financial support is so lowvand I dont have 2 years worth of savings to pay for health insurance until subsidized healthcare is affordable. It is tougb. One of the scariest things is watching your savings just drain away.

I appreciate all the feedback here. It is always thoughtful and helpful.

REPLY
@wesbig

I feel your pain, I wish that there was something I could say or do to make you feel better, but I can’t. I currently am going to six different doctors. Last week I was taking ten pills a day. Bye the end of the week I never felt worse. I have been to two rheumatologist and there still not sure what is wrong. I have several good doctors at this time. One thing I found out is if they don’t take the time to listen to you, let them go and look for someone else. Always keep copies of your lab work to show your next doc. Also have you seen an endocrinologist for your low cortisol. I have been through that. It took about six months to get my levels back to normal. Not sure I said anything that you didn’t already know. Hope you start feeling better.

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Thank you for your support. My endocrinologist is passive, saying let me know if your rheum wants to do the taper.

I think we need to see the outcome of the neurologist’s evaluation. I have more comfort with him. i told him about my B6 deficit as well and he warned neurological symptoms can get worse with too much B6.

The volume of pills is daunting. And who knows if side effects are adding to our challenges. For me, the passiveness to keep everything status quo is hard when you dont feel well. Sometimes I feel like we just have to tolerate our as is state because the docs feel it is the best that they can do.

For me, addressing falling is an issue. We are addressing with a walker, but why do I fall. Last night I stood up and next thing I know I am trying to land back in the chair…no dizziness.

I guess we just need to keep asking questions. Next week I will be evaluated by a physical therapist. Between him and the neurologist, maybe we can find an answer.

Thanks much.

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No problem. Trying to untangle this but I can only take it so far.

So was POTS/dysautonomia ever given as a formal diagnosis and a treatment plan formulated? You emphasize your history with prednisone but mineralocorticoids are more of a foundation for POTS, true? The POTS diagnosis would be in the neurologist’s wheelhouse.

How did the neurologist conclude that you have low cortisol in the context of an office visit? Something obvious like hyperpigmentation of sun exposed areas? Very low resting blood pressure? Major endocrinological illnesses like adrenal insufficiency will knock homeostasis off systemically. An endocrinologist is the one to sort that out, not a neurologist or rheumatologist.

http://www.dinet.org/index.php/information-resources/pots-place/pots-what-helps

http://emedicine.medscape.com/article/116467-clinical

What mage you aware of B6 deficiency and how did you confirm it?

I can’t help going back to the fact that the med management is all over the place. You are take anti-hypertensives to drive your BP down, and prednisone which will drive it up.

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@johnwburns

No problem. Trying to untangle this but I can only take it so far.

So was POTS/dysautonomia ever given as a formal diagnosis and a treatment plan formulated? You emphasize your history with prednisone but mineralocorticoids are more of a foundation for POTS, true? The POTS diagnosis would be in the neurologist’s wheelhouse.

How did the neurologist conclude that you have low cortisol in the context of an office visit? Something obvious like hyperpigmentation of sun exposed areas? Very low resting blood pressure? Major endocrinological illnesses like adrenal insufficiency will knock homeostasis off systemically. An endocrinologist is the one to sort that out, not a neurologist or rheumatologist.

http://www.dinet.org/index.php/information-resources/pots-place/pots-what-helps

http://emedicine.medscape.com/article/116467-clinical

What mage you aware of B6 deficiency and how did you confirm it?

I can’t help going back to the fact that the med management is all over the place. You are take anti-hypertensives to drive your BP down, and prednisone which will drive it up.

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So stepping through
•B6 deficiciency was found by colleague in practice with my Primary care. I
was having nerve pain every where-pins and needles, burning, bad leg pain,
back pain, plus my falls. That is when I was prescribed the walker,
lidocaine pain patches, and she ran blood work on my B vitamins. Only B6
was low-15 nanomoles and 20 is lower bound. I mentioned that to Neurologist
and he cautioned watch out as you can get neuro symptoms from too much too.
The PCP prescribed 100 Mg/day.

•With both Calcium channel blocker and Beta blocker and Lasix, along with
Prednisone, my heart is getting conflicting signals. Calcium blocked should
trump all, addressing my bad Raynauds. Beta for headache prevention. Lasix
for foot/ankle edema and prednisone for inflammation and now my adrenals
too. Generally my BP stays low, like 100/60. Bit if I am in bad pain or
with infection, it shoots up.
The combination of all has to be impacting my balance, and maybe that’s why
it isn’t explored more-but something has changed where I have now become
imbalanced.

•yes, I have to get down to 1 owner of my meds…and less (but the right
ones)

•Dysautonomia was diagnosed by a pain management doc in 2005. He ordered a
tilt table study. My BP change was 30. When the change happened it felt
like I had a huge volume pf knives stabbing my body. The pain doc shared
his daughter had the illness so he knew the illness. So he told me get all
the books I could, wear compression host and take salt tablets. Then he
dismissed me as a patient…not anything else he could do. So there I
was-no plan, told with exercise and good diet, literature said I would have
7 years to live. Later docs were skeptically/ignored.

•the irony I saw was that mineralocorticoids help in balancing out the
endocrine issues when there is ACTH depletion and ACTH helps in signaling
adrenals to produce cortisol. To me it seems ironic and maybe that old
diagnosis needs revisiting. I told my PCP and she didn’t want to explore
because a positive result could happen just with meds I am on…but doesn’t
that say we need meds reviewed, period? I am going to raise this with
Neurologist…

Thanks for talking through this, I appreciate.

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I have been sitting here reading all this, and I am equally saddened and in disbelief. I share so many symptoms, I can’t believe it. I was fine until January of this year. Had multiple symptoms, all at once. Headache, eye blurriness and discomfort, neck and back pain, tinnitus in right ear, chest pain and heart palpitations, digestive issues, no appetite, weight loss, constipation, pins and needles in extremities, muscle pain and weakness in arms, legs, hands, and feet, dry skin, different spots on skin, and over the past few months, major hair loss. Add menopause symptoms to this, and I feel like I have been poisoned and dying sometimes. I have been to the ER 3 times regarding the chest pain, had tests and scans done, all ok. Saw cardiologist, had chest ct done, looked normal. Was diagnosed from hospital with Gerd and gallstones, had gallbladder removed in March. This solved zero of my issues, and I feel has actually made new symptoms, and made others worse. I’ve been to two different gps, a cardiologist, a urologist, a gynecologist, neurologist, gastroenterologist, an optometrist, and rheumatologist. Have had all the tests and procedures, and have no answers. My ANA has been positive four times, but other inflammatory markers are good. Also seeing hematologist for blood monitoring. I have an upcoming D&C scheduled for a fluid filled cyst or deposit in my uterus, and also a ct scan of abdomen/pelvis this Friday. So far, I have been given antidepressants, gabapentin, nexium, multiple antibiotics for recurrent Utis, Plaquenil, even though I’m not formally diagnosed with lupus, and metoprolol for HBP. I take supplements, when I can tolerate them, as I have daily nausea. I also get anxiety and panic attacks, and was just recently prescribed Lorazepam, to take as needed. I had to beg to get them, as doctors don’t want to prescribe them anymore. To date, the Lorazepam is the only medicine that gives me any relief from this madness. Can’t explain it, but it’s true. Not one doctor has any inkling of what’s happening, but I am desperate for answers! I am coming up on an almost 50 lb. weight loss! Very frightened and tired of being sick!

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@debdeb

I have been sitting here reading all this, and I am equally saddened and in disbelief. I share so many symptoms, I can’t believe it. I was fine until January of this year. Had multiple symptoms, all at once. Headache, eye blurriness and discomfort, neck and back pain, tinnitus in right ear, chest pain and heart palpitations, digestive issues, no appetite, weight loss, constipation, pins and needles in extremities, muscle pain and weakness in arms, legs, hands, and feet, dry skin, different spots on skin, and over the past few months, major hair loss. Add menopause symptoms to this, and I feel like I have been poisoned and dying sometimes. I have been to the ER 3 times regarding the chest pain, had tests and scans done, all ok. Saw cardiologist, had chest ct done, looked normal. Was diagnosed from hospital with Gerd and gallstones, had gallbladder removed in March. This solved zero of my issues, and I feel has actually made new symptoms, and made others worse. I’ve been to two different gps, a cardiologist, a urologist, a gynecologist, neurologist, gastroenterologist, an optometrist, and rheumatologist. Have had all the tests and procedures, and have no answers. My ANA has been positive four times, but other inflammatory markers are good. Also seeing hematologist for blood monitoring. I have an upcoming D&C scheduled for a fluid filled cyst or deposit in my uterus, and also a ct scan of abdomen/pelvis this Friday. So far, I have been given antidepressants, gabapentin, nexium, multiple antibiotics for recurrent Utis, Plaquenil, even though I’m not formally diagnosed with lupus, and metoprolol for HBP. I take supplements, when I can tolerate them, as I have daily nausea. I also get anxiety and panic attacks, and was just recently prescribed Lorazepam, to take as needed. I had to beg to get them, as doctors don’t want to prescribe them anymore. To date, the Lorazepam is the only medicine that gives me any relief from this madness. Can’t explain it, but it’s true. Not one doctor has any inkling of what’s happening, but I am desperate for answers! I am coming up on an almost 50 lb. weight loss! Very frightened and tired of being sick!

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Hi, Clearly something happened but were all of these changes abrupt or did they develop over a prolonged period of time?
So your ANA is normal now?
Which “other inflammatory markers” have you had checked? Just a note that most tests for autoimmune markers don’t directly relate to inflammation. CRP and ESR are usually enough for that.
You don’t mention thyroid tests but I assume that those were done. How about anti thyroid antibodies, as in TPO?

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Most happened all at once, in the month of January. ANA is still positive, but 1:140, homogenous, which is low. I’m new to all this, so all I know is the rheumatologist ordered about eight vials of blood tested, and really the only thing bad was the positive ANA. Had thyroid tested a few times, by different Drs, and they say all good. I never trust they are doing the right testing though. Don’t know about the TPO test, will have to look.

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@debdeb

Most happened all at once, in the month of January. ANA is still positive, but 1:140, homogenous, which is low. I’m new to all this, so all I know is the rheumatologist ordered about eight vials of blood tested, and really the only thing bad was the positive ANA. Had thyroid tested a few times, by different Drs, and they say all good. I never trust they are doing the right testing though. Don’t know about the TPO test, will have to look.

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TPO won’t tell you everything but it might be a clue if its strongly positive and matrixes with some other things.
If you can get hold of your test results you should review and consolidate them to make sure you don’t recover old ground and that due diligence was done for the autoimmune big hitters like Lupus, Sjogren’s, MCTD, etc.

Here’s a reference of autoimmune diseases which if you page through you’ll get to lab tests.

https://labtestsonline.org/understanding/conditions/autoimmune/start/1

It might not be autoimmune. Did they test for infections that can leave systemic effects like Lyme and brucellosis?

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@debdeb

Most happened all at once, in the month of January. ANA is still positive, but 1:140, homogenous, which is low. I’m new to all this, so all I know is the rheumatologist ordered about eight vials of blood tested, and really the only thing bad was the positive ANA. Had thyroid tested a few times, by different Drs, and they say all good. I never trust they are doing the right testing though. Don’t know about the TPO test, will have to look.

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I know i was negative for the biggies, but don’t think they tested for Lyme or brucellosis. I just received blood draw results from last week, and my fasting glucose was 104, which I believe is considered pre diabetic. But, that shouldn’t be causing all these symptoms, I wouldn’t think. What is TPO?

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@debdeb

Most happened all at once, in the month of January. ANA is still positive, but 1:140, homogenous, which is low. I’m new to all this, so all I know is the rheumatologist ordered about eight vials of blood tested, and really the only thing bad was the positive ANA. Had thyroid tested a few times, by different Drs, and they say all good. I never trust they are doing the right testing though. Don’t know about the TPO test, will have to look.

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Right, 104 could indicate pre-diabetes but that’s not going to cause a lot of obvious problems. I just picked brucellosis out because it can cause odd symptoms but you probably want them to test for Lyme for starters. Maybe a toxicology screen if you’ve been exposed to chemical or metallic agents, rare.

TPO is for a type of anti-thyroid antibodies present in hypo and hyperthyroidism and can co-occur with other immune diseases, but you say they tested for the big hitters. Unless you’re having thyroid symptoms its probably a long shot as well.

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