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.

@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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i have never divulged the following but here it is: i am a walking pill why: even i cannot accept all of the following:
rheumatoid arthritis

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@peach414144

i have never divulged the following but here it is: i am a walking pill why: even i cannot accept all of the following:
rheumatoid arthritis

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sorry, computer got hung up. the following is what i have: rheumatoid arthritis, psoriatic arthritis, psjogrens, hypothyroidism, diabetes 2, heart dysfunctions, , h pylori, stomach ulcers, neuropathy (legs and feet), PTSD, glaucoma, maccular degeneration and stage 3 kidney. forgot, occasional migraines. wow! and wow! but, at age 80 i am still driving, food shopping (some heavy stuff), cleaning the house, (hate doing the floors), dishes, pots, washing machine the clothes etc. everything is harder than ever, just go slower. all this while wearing the "boot or boots, wrist braces", etc. some days i just let it all alone and do nothing except cook. if i am ever put into "assisted living" is when i will deteriate much faster. i know my time is coming but i want it in my home. PS the cats and dogs are a great, great help. have a dogie door and a fenced yard and let the rain wash away whatever. i am not different than most people. NOW HERE COMES THE KICKER; CAN THIS REALLY BE HAPPENING TO ONE PERSON? CAN ONE PERSON REALLY HAVE ALL OF THESE MEDICAL DIAGNOSIS?

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@peach414144

i have never divulged the following but here it is: i am a walking pill why: even i cannot accept all of the following:
rheumatoid arthritis

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Hello @peach414144, the diagnosis do seem to pile up the older we get..☺ Well, at least that's been my case but I'm behind you a little if it's race. Actually more than a little since I only have SFPN, PMR, osteopenia, degenerative spine disease (or something to that order), carpal tunnel, high blood pressure and the start of cataracts causing (I think) some vision issues. Just want you to know that I'm not trying to catch up with you but want you to slow down a little and enjoy yourself. I'm happy to still be driving myself that's the one thing that I fear the most - not being able to drive anymore.

John

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@peach414144

i have never divulged the following but here it is: i am a walking pill why: even i cannot accept all of the following:
rheumatoid arthritis

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you are right about the driving. without that capability we are "DEAD IN THE WATER". we cannot continue our life style. then i shutter a little. but for now i will pet the cat. sincerely and caringly. thanks for your reply.

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Well, seems everyone one has pretty much summed things up...we are among the walking dead...I will get through this muck.

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