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.

@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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There are lots of options for people to be driven around these days. UBER, Lift, buses..We are not dead yet! And when we are, we will probably get a huge laugh out of why we had to go through the pain we have in this life. Maybe it is to learn compassion for those who are in pain.

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@robbinr

There are lots of options for people to be driven around these days. UBER, Lift, buses..We are not dead yet! And when we are, we will probably get a huge laugh out of why we had to go through the pain we have in this life. Maybe it is to learn compassion for those who are in pain.

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i live in a small town, no uber and whatever or busses. if i had the money i would move back to brooklyn. plenty of help there. there are many people who are far worse than i so i should stop feeling sorry for myself. i at this time i still volunteer and will continue to do so until.

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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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ahha. so i am not the only one. thanks for the input. sometimes we feel sorry for ourselves and do no realize it. i guess it was my turn. now back to living again.

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In a small town, surely you know someone who doesn’t have a car, who would drive you when the time comes? Or talk to the High School coaches about a potential young person who could drive Ms Peach:} But you are not there yet so we won’t borrow trouble.

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@parus

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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i like that “the walking dead”. good humor, great to laugh at.

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why have i not seen the doctors who really CARE? even if they do, they do not show it. really wish someone would explain this to us. i have my own ideas but with some of them i had best not reveal them for fear of reprisal. i am sure there are more of us who feel the same way FRUSTRATED and angrrry.

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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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I just had cataract surgery and it went very well.  I have one regular lens and one toric lens for astigmatism.  I only have to wear glasses for reading now.  Can see over the Rockies for long distance.  And colors are amazing.
Word of warning: I didn't realize I was so old looking in the mirror!!

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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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I had that about 7yr ago it went well but l thought l would be able to get rid of glasses. But l guess that was only a wish. Hope you are doing well and you have a speedy recovery.

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@peach414144 A no brainer…this is their trade and how they make a living. It is no different that any other profession. They cannot get involved or show any true compassion for fear of reprisal. All of these commercials, the media, etc., are misleading. I will admit I do no longer trust anyone in the medical profession, nor, any where else. Yet, there are times folks need one or several…all of the specialists is enough to gag a gnat. The PCP does nothing but refer to specialists…the way it is now. It is a trade the same as an attorney, a teacher, a used car sales person…

My opinion and the only way I know to realistically view any profession.

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@parus

@peach414144 A no brainer…this is their trade and how they make a living. It is no different that any other profession. They cannot get involved or show any true compassion for fear of reprisal. All of these commercials, the media, etc., are misleading. I will admit I do no longer trust anyone in the medical profession, nor, any where else. Yet, there are times folks need one or several…all of the specialists is enough to gag a gnat. The PCP does nothing but refer to specialists…the way it is now. It is a trade the same as an attorney, a teacher, a used car sales person…

My opinion and the only way I know to realistically view any profession.

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yes, when i read your post i thought i wrote it. you are good. what an insight you have. like you read my mind. i am so glad that i am not the only one to feel like this. thank you

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