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.

Has anyone tested you for Lyme’s Disease? Your flu-like smptoms followed up by paresthesias and weakness fit that well.

Liked by Parus

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@schnau

Has anyone tested you for Lyme’s Disease? Your flu-like smptoms followed up by paresthesias and weakness fit that well.

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No. I have been diagnosed with several things.

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@schnau

Has anyone tested you for Lyme’s Disease? Your flu-like smptoms followed up by paresthesias and weakness fit that well.

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I have a brain disease. It’s called Fibromyalgia. The pain and fatigue are elevated AFTER I exert myself.

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@schnau

Has anyone tested you for Lyme’s Disease? Your flu-like smptoms followed up by paresthesias and weakness fit that well.

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Probably going back to Mayo to the Fibromyalgia Center soon.

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@brie87144 Sounds very discouraging. I was going to ask about the Lyme disease as well…can be tough to deal with and may as well check into it and if possibly eliminate something. I had Lyme in 1983 and when I get too tired or my immune system is compromised the Lyme also kicks in. @sauvee I was unaware that fibromyalgia was a brain disease. Never had a doctor tell me this…Hmmmm.

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I’ve been diagnosed with Fibro 80’since the 80’s. I’ve never heard it referred to as a brain disease! Who told you this?

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I’ve been having similar symptoms and done a lot of reading and research on my own and come to the conclusion that it’s small fiber polyneuropathy. Tbe leading researcher in that area is Louise Oaklander, MD, PhD in Boston. Read about her research work and about neuropathycommon.org. My neurologist told me tbat not much iz known about sml fiber polyneuropathy and suggested I try to find clinical research projects to join.

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Hello @steeldove, welcome to Connect. Doing research and learning as much as you can about your health issues is a good thing. Have you had an EMG test done? Symptoms don’t always point to a specific diagnosis. Mayo Clinic has some information on the test and why it’s done, etc.. –

http://www.mayoclinic.org/tests-procedures/emg/basics/definition/prc-20014183

The Foundation for Peripheral Neuropathy has some information on clinical trials that may interest you:
https://www.foundationforpn.org/research/clinical-trials/

I’m not a medical professional and have had no medical training but I’m quite surprised that your neurologist would say there is not much known about small fiber polyneuropathy. Google Scholar (https://scholar.google.com/) is a great place to search for information on medical testing, trials and more. A quick search on the phrase “small fiber polyneuropathy” turned up over 37,000 results which you can pare down by using the year links at the left of the page to get the newest information.

https://scholar.google.com/scholar?q=small+fiber+polyneuropathy&btnG=&hl=en&as_sdt=0%2C24

Hoping you find some answers.

John

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@steeldove

I’ve been having similar symptoms and done a lot of reading and research on my own and come to the conclusion that it’s small fiber polyneuropathy. Tbe leading researcher in that area is Louise Oaklander, MD, PhD in Boston. Read about her research work and about neuropathycommon.org. My neurologist told me tbat not much iz known about sml fiber polyneuropathy and suggested I try to find clinical research projects to join.

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Hello @steeldove,

I’d like to add my welcome, and thank you for posting your message on Mayo Clinic Connect. In addition to Mentor @johnbishop‘s resources, here’s some more information about small fiber polyneuropathy, from Mayo Clinic:
“Peripheral neuropathy can affect one nerve (mononeuropathy), two or more nerves in different areas (multiple mononeuropathy) or many nerves (polyneuropathy). Carpal tunnel syndrome is an example of mononeuropathy. Most people with peripheral neuropathy have polyneuropathy.” http://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/home/ovc-20204944

@steeldove, would you share more details about your diagnosis? How are you currently managing your symptoms?

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I’m reading this in disbelief. I could have completely written the same story Symptoms, testing, doctors…. I am both relieved and in disbelief that in not alone.

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@lisaann03

I’m reading this in disbelief. I could have completely written the same story Symptoms, testing, doctors…. I am both relieved and in disbelief that in not alone.

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Hello Lisa (@lisaann03), we are glad you found us – welcome to Mayo Connect. You are so right – we are not alone and here on Connect we can share our story, ask questions, find answers and treatments that have worked for others, and most of all help each other through our daily struggles with out health issues.

Can you share a little more about your health story or do you have some questions for anyone in the group? You can “tag” a Connect member by using their Connect username that starts with the “@” sign if you want to ask a specific person in the group.

John

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Hi @lisaann03,

I’d like to welcome you, and emphasize John’s remark that you are not alone; we are sincerely happy that you’ve joined the Connect community.

Here are a few other discussions you may wish to view:
Autoimmune Diseases and Fatigue: https://connect.mayoclinic.org/discussion/autoimmune-diseases-and-fatigue/
Undiagnosed auto immune disease: https://connect.mayoclinic.org/discussion/undiagnosed-auto-immune-disease/
Have a few autoimmune disorders: https://connect.mayoclinic.org/discussion/have-a-few-autoimmune-disorders-now-have-consistent-low-grade-fever/
MCTD (Mixed Connective Tissue Disease): https://connect.mayoclinic.org/discussion/mctd-mixed-connective-tissue-disease/

Please feel free to scroll through the conversations, tag members, and/or post your message in any of those groups, if you wish.

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I found rheumatologists to be extremely unhelpful. Have you been checked for Epstein-Barr? Mono? I found that I carry several persistent viruses – they are opportunistic, and if you get worn-down they rear their ugly heads with feeling flu-like symptoms and exhaustion.

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@robbinr

I found rheumatologists to be extremely unhelpful. Have you been checked for Epstein-Barr? Mono? I found that I carry several persistent viruses – they are opportunistic, and if you get worn-down they rear their ugly heads with feeling flu-like symptoms and exhaustion.

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in responce to your “extremely unhelpful”,i am sorry to say this about the last rheumatologist i saw. as soon as i got home i started to laugh off and on for the rest of the day. but, we cannot give up. just keep trying and trying and trying.

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Laughter is healing…laughing myself silly at how inane I can be…combo here of sarcasm, cynicism and humor…pick your favorite one.

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