1. < Autoimmune Diseases

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.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Darlia | @darlia | Aug 12, 2017
In reply to @kgoodwin9 "I agree they don't have a great deal of experience with auto-immune and rare disorders. Many..." + (show)
@kgoodwin9

I agree they don't have a great deal of experience with auto-immune and rare disorders. Many diseases have the same symptoms and it is difficult. It is important to be your own advocate and start researching your symptom's and ask the doctors questions and document everything so you can see what helped and what didn't. Often times other things get lumped into "auto immune" when they don't even relate. I had gall bladder infection where chills, fever, and stomach issues were passed off as this rare disease when in fact it was an infected gall bladder. Once that was removed and the "Candida" was elimated I started feeling much better and was then left with the remaining AI symptoms. I also broke out in hives around hip and buttock area with a few spots on back and even fewer on the stomach. This was passed off as part of the systemic skin issues with autoimmune I found out 3 months later it was related to "Bactrim". I had stopped Bactrim when I was admitted to hospital and when I started it back up within 2 hours the blisters and red marks appeared. This was antibiotic I was told to take 3 times a week by infectious disease and lung specialists as they said it would fight off pneumonia as my immune system was weak and they were worried about this. I showed everyone (lung and infectious disease, primary and rheumatologist and dermatologist) the hive spots and NOBODY said anything about potential reaction to anything I was taking. They all knew med history and saw me frequently for skin, lungs, other items BUT they all lumped this into the auto immune category.

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Hi Dany,

I appreciate you recognizing your spiritual need. Jesus said blessed are those who do! I would like to recommend that you go to jw.org where you can get ALL of your questions answered. If I can be of any assistance, please ask.
Darlia

REPLY
danybegood1 | @danybegood1 | Aug 12, 2017
In reply to @kgoodwin9 "I agree they don't have a great deal of experience with auto-immune and rare disorders. Many..." + (show)
@kgoodwin9

I agree they don't have a great deal of experience with auto-immune and rare disorders. Many diseases have the same symptoms and it is difficult. It is important to be your own advocate and start researching your symptom's and ask the doctors questions and document everything so you can see what helped and what didn't. Often times other things get lumped into "auto immune" when they don't even relate. I had gall bladder infection where chills, fever, and stomach issues were passed off as this rare disease when in fact it was an infected gall bladder. Once that was removed and the "Candida" was elimated I started feeling much better and was then left with the remaining AI symptoms. I also broke out in hives around hip and buttock area with a few spots on back and even fewer on the stomach. This was passed off as part of the systemic skin issues with autoimmune I found out 3 months later it was related to "Bactrim". I had stopped Bactrim when I was admitted to hospital and when I started it back up within 2 hours the blisters and red marks appeared. This was antibiotic I was told to take 3 times a week by infectious disease and lung specialists as they said it would fight off pneumonia as my immune system was weak and they were worried about this. I showed everyone (lung and infectious disease, primary and rheumatologist and dermatologist) the hive spots and NOBODY said anything about potential reaction to anything I was taking. They all knew med history and saw me frequently for skin, lungs, other items BUT they all lumped this into the auto immune category.

Jump to this post

@darlia, recommend your little heart out. Ive been on this site for about 2 years, one encounter with your little band and i think im done.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 12, 2017
In reply to @kgoodwin9 "I agree they don't have a great deal of experience with auto-immune and rare disorders. Many..." + (show)
@kgoodwin9

I agree they don't have a great deal of experience with auto-immune and rare disorders. Many diseases have the same symptoms and it is difficult. It is important to be your own advocate and start researching your symptom's and ask the doctors questions and document everything so you can see what helped and what didn't. Often times other things get lumped into "auto immune" when they don't even relate. I had gall bladder infection where chills, fever, and stomach issues were passed off as this rare disease when in fact it was an infected gall bladder. Once that was removed and the "Candida" was elimated I started feeling much better and was then left with the remaining AI symptoms. I also broke out in hives around hip and buttock area with a few spots on back and even fewer on the stomach. This was passed off as part of the systemic skin issues with autoimmune I found out 3 months later it was related to "Bactrim". I had stopped Bactrim when I was admitted to hospital and when I started it back up within 2 hours the blisters and red marks appeared. This was antibiotic I was told to take 3 times a week by infectious disease and lung specialists as they said it would fight off pneumonia as my immune system was weak and they were worried about this. I showed everyone (lung and infectious disease, primary and rheumatologist and dermatologist) the hive spots and NOBODY said anything about potential reaction to anything I was taking. They all knew med history and saw me frequently for skin, lungs, other items BUT they all lumped this into the auto immune category.

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Good morning @danybegood1. I read Darlia's message as reaching out kindly to you. But I see that you are hurt and will send you a private message so we can talk about it. Let's let this conversation return to its originally intended topic about autoimmune disease.

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Parus | @parus | Aug 13, 2017

@danybegood1 endeavor to not allow one member drive you a way. Do your best to ignore the words of others that have been trained in different ways.

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peggy1949 | @peggy1949 | Aug 15, 2017

Please have an endocrinologist test for thyroid TPO and Anti-TG Antibodies. All my usual thyroid tests (TSH, T4, T3, etc.) were "within range" until the antibody tests were run; mystery was solved. Also, has your blood calcium level gone up? Another VERY important test is Vitamin D level (25-OH VITD).

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Aug 15, 2017
In reply to @peggy1949 "Please have an endocrinologist test for thyroid TPO and Anti-TG Antibodies. All my usual thyroid tests..." + (show)
@peggy1949

Please have an endocrinologist test for thyroid TPO and Anti-TG Antibodies. All my usual thyroid tests (TSH, T4, T3, etc.) were "within range" until the antibody tests were run; mystery was solved. Also, has your blood calcium level gone up? Another VERY important test is Vitamin D level (25-OH VITD).

Jump to this post

Hello Peggy (@peggy1949) - welcome to Mayo Connect! We are glad you found us. It's a great place to share information and learn from each other about similar health concerns. I noticed you posted some good information but I wasn't sure who it was meant to read it. Was there a paricular Connect member you were trying to help? Can I offer a suggestion? When you reply to a post, click Reply directly under the post by the person you are replying to. I usually also add their Connect name (@connectname) so that they get an email notification.

Thanks again for posting this information!
John

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alwayswithgrace | @alwayswithgrace | Jan 4, 2018

My entire life super healthy. Then blam. I think Some bug or Protozoa or virus they haven’t found yet. I had a similar thing happen. I was perfectly normal then I got some bug or exposed to whatever. Really bad flu symptoms, then horrid cough for months. Finally partially resolved only some cough left. Then bingo I started getting severe muscle pain, numbness, tingling, my joints would swell up out of no where and suddenly I would feel severe pain. My fingers would get five times normal size and feel like I broke a bone. 48 hours later gone. Can hit any joint in my body. When the swelling would resolve I was left with damaged (on X-ray) joints. I am frequently exhausted to the point I feel like I am half asleep even when awake. After four years of searching for someone to help including Hopkins I went to dr. Levin. He gave me IV colchicine and Myers cocktail once a week for three weeks. Suddenly I could run up the stairs again. My symptoms seemed to have disappeared. I had four years where I felt cured. Then after around four years same problems started coming back even though I had no been super sick again. Dr Levin had retired, FDA took IV colchicine off the market. In the seven years since I have tried to just manage. It is really depressing. Currently muscle pain is back, joint swelling including heat and severe pain. Weird stuff like my eyes turn red and my feet will be very cold when the rest of my is fine. Sometimes weird rashes on my chest. Some super weird bubbly itchy thing on my neck.

Going through hell. None of the doctors knows or cares. Blood work sometimes comes back high ANA latest test completely normal. No other autoimmune markers showing right now either.

If anyone hears of anything else I could do. Shout.

REPLY
28 replies
Mentor
John, Volunteer Mentor | @johnbishop | Jan 4, 2018
In reply to @alwayswithgrace "My entire life super healthy. Then blam. I think Some bug or Protozoa or virus they..." + (show)
@alwayswithgrace

My entire life super healthy. Then blam. I think Some bug or Protozoa or virus they haven’t found yet. I had a similar thing happen. I was perfectly normal then I got some bug or exposed to whatever. Really bad flu symptoms, then horrid cough for months. Finally partially resolved only some cough left. Then bingo I started getting severe muscle pain, numbness, tingling, my joints would swell up out of no where and suddenly I would feel severe pain. My fingers would get five times normal size and feel like I broke a bone. 48 hours later gone. Can hit any joint in my body. When the swelling would resolve I was left with damaged (on X-ray) joints. I am frequently exhausted to the point I feel like I am half asleep even when awake. After four years of searching for someone to help including Hopkins I went to dr. Levin. He gave me IV colchicine and Myers cocktail once a week for three weeks. Suddenly I could run up the stairs again. My symptoms seemed to have disappeared. I had four years where I felt cured. Then after around four years same problems started coming back even though I had no been super sick again. Dr Levin had retired, FDA took IV colchicine off the market. In the seven years since I have tried to just manage. It is really depressing. Currently muscle pain is back, joint swelling including heat and severe pain. Weird stuff like my eyes turn red and my feet will be very cold when the rest of my is fine. Sometimes weird rashes on my chest. Some super weird bubbly itchy thing on my neck.

Going through hell. None of the doctors knows or cares. Blood work sometimes comes back high ANA latest test completely normal. No other autoimmune markers showing right now either.

If anyone hears of anything else I could do. Shout.

Jump to this post

Hello @alwayswithgrace -- welcome to Mayo Connect. We are glad you found us. It sound like you have a lot on your plate and have been dealing with it for a long time. I've had one instance of gout in my right foot many years ago and it was swollen really bad. I was given colchicine and it did it's thing and the swelling went away fairly fast. I was also diagnosed with polymyalgia rheumatica around the same time. I can remember the right foot being so painful I could not stand on it.

Did you receive a diagnosis from Dr. Levin? Also have you thought about seeing another doctor to get second opinion?

Here are some pages that may shed some light on some of your symptoms:

Mayo Clinic information on causes for red eyes:
https://www.mayoclinic.org/symptoms/red-eye/basics/causes/sym-20050748

Mayo Clinic slide show on common skin rashes:
https://www.mayoclinic.org/skin-rash/sls-20077087

You also may want to check out the Mayo Clinic Symptom Checker here:
https://www.mayoclinic.org/symptom-checker/select-symptom/itt-20009075

I'm also tagging a few Connect members who may be able to offer more suggestions or information. @kanaazpereira @predictable @hopeful33250 do you have any suggestions for @alwayswithgrace ?

John

REPLY
olegraymare | @olegraymare | Jan 5, 2018
In reply to @alwayswithgrace "My entire life super healthy. Then blam. I think Some bug or Protozoa or virus they..." + (show)
@alwayswithgrace

My entire life super healthy. Then blam. I think Some bug or Protozoa or virus they haven’t found yet. I had a similar thing happen. I was perfectly normal then I got some bug or exposed to whatever. Really bad flu symptoms, then horrid cough for months. Finally partially resolved only some cough left. Then bingo I started getting severe muscle pain, numbness, tingling, my joints would swell up out of no where and suddenly I would feel severe pain. My fingers would get five times normal size and feel like I broke a bone. 48 hours later gone. Can hit any joint in my body. When the swelling would resolve I was left with damaged (on X-ray) joints. I am frequently exhausted to the point I feel like I am half asleep even when awake. After four years of searching for someone to help including Hopkins I went to dr. Levin. He gave me IV colchicine and Myers cocktail once a week for three weeks. Suddenly I could run up the stairs again. My symptoms seemed to have disappeared. I had four years where I felt cured. Then after around four years same problems started coming back even though I had no been super sick again. Dr Levin had retired, FDA took IV colchicine off the market. In the seven years since I have tried to just manage. It is really depressing. Currently muscle pain is back, joint swelling including heat and severe pain. Weird stuff like my eyes turn red and my feet will be very cold when the rest of my is fine. Sometimes weird rashes on my chest. Some super weird bubbly itchy thing on my neck.

Going through hell. None of the doctors knows or cares. Blood work sometimes comes back high ANA latest test completely normal. No other autoimmune markers showing right now either.

If anyone hears of anything else I could do. Shout.

Jump to this post

Hi John.  Thanks for your quick response.  No, the past year hasn&apos;t been my cup of tea ... your situation doesn&apos;t sound much better !
I live in Virginia Beach and don&apos;t know who Dr. Levin is ... nor do I know what colchicine is.  I don&apos;t want to be on prednisone any longer (I&apos;m only on 1 mg now) and I am very leery of taking supplements.  What I would like to do is maybe talk to a nutritionist to determine WHAT is causing my inflammation.  I don&apos;t know who else to talk to but a nutritionist!  We have a couple of homeopathic doctors here that have been recommended to me.  I&apos;m on the fence.  However, one of them is a nutritionist.  I was always of the opinion that my diet is a very healthy one and I&apos;m not over weight.  But, one never knows.

I&apos;m frustrated because normally I&apos;m a very active (athletic) 70 year old.  Maybe it&apos;s just my arthritis/tendonitis getting to me.  Need to slow down.  But, when I move, I feel better.

Regarding a second opinion ... actually when I first started hurting, my first step was to see my G.P.  After telling him my symptoms, he told me it sounded like classic PMR.  Then, he referred me to a rheumatoid arthritis doc (after a 3 month wait, I was able to get in) ... and she did the popular C-reactive protein test and my level was VERY high (33, rather than the customary 2.5).  So, she diagnosed PMR too.  Between seeing the GP and RA, I went to a chiropractor and an orthopedist who did an MRI of my neck and left shoulder.  Also did the PT thing.  So, that&apos;s more of my history.

P.S.  Sorry for the looong post !!!
Jan

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Jan 5, 2018
In reply to @alwayswithgrace "My entire life super healthy. Then blam. I think Some bug or Protozoa or virus they..." + (show)
@alwayswithgrace

My entire life super healthy. Then blam. I think Some bug or Protozoa or virus they haven’t found yet. I had a similar thing happen. I was perfectly normal then I got some bug or exposed to whatever. Really bad flu symptoms, then horrid cough for months. Finally partially resolved only some cough left. Then bingo I started getting severe muscle pain, numbness, tingling, my joints would swell up out of no where and suddenly I would feel severe pain. My fingers would get five times normal size and feel like I broke a bone. 48 hours later gone. Can hit any joint in my body. When the swelling would resolve I was left with damaged (on X-ray) joints. I am frequently exhausted to the point I feel like I am half asleep even when awake. After four years of searching for someone to help including Hopkins I went to dr. Levin. He gave me IV colchicine and Myers cocktail once a week for three weeks. Suddenly I could run up the stairs again. My symptoms seemed to have disappeared. I had four years where I felt cured. Then after around four years same problems started coming back even though I had no been super sick again. Dr Levin had retired, FDA took IV colchicine off the market. In the seven years since I have tried to just manage. It is really depressing. Currently muscle pain is back, joint swelling including heat and severe pain. Weird stuff like my eyes turn red and my feet will be very cold when the rest of my is fine. Sometimes weird rashes on my chest. Some super weird bubbly itchy thing on my neck.

Going through hell. None of the doctors knows or cares. Blood work sometimes comes back high ANA latest test completely normal. No other autoimmune markers showing right now either.

If anyone hears of anything else I could do. Shout.

Jump to this post

You are doing the right thing by staying as active as possible. Sorry about the Dr Levin comment... I saw the name in your post. You might want to check out a book by Dr Terry Wahls - The Wahls Protocol. She’s all about nutrition at the cellular level. She has an amazing story about how she reduced/eliminated her MS symptoms through nutrition. Here is a YouTube video of her:

John

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