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.

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.

REPLY
@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.

Jump to this post

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

REPLY
@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.

Jump to this post

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?

REPLY

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.

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

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.

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

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.

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

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
Please sign in or register to post a reply.