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Autoimmune diagnosing problem
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.
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Hi, Clearly something happened but were all of these changes abrupt or did they develop over a prolonged period of time?
So your ANA is normal now?
Which "other inflammatory markers" have you had checked? Just a note that most tests for autoimmune markers don't directly relate to inflammation. CRP and ESR are usually enough for that.
You don't mention thyroid tests but I assume that those were done. How about anti thyroid antibodies, as in TPO?
Most happened all at once, in the month of January. ANA is still positive, but 1:140, homogenous, which is low. I'm new to all this, so all I know is the rheumatologist ordered about eight vials of blood tested, and really the only thing bad was the positive ANA. Had thyroid tested a few times, by different Drs, and they say all good. I never trust they are doing the right testing though. Don't know about the TPO test, will have to look.
TPO won't tell you everything but it might be a clue if its strongly positive and matrixes with some other things.
If you can get hold of your test results you should review and consolidate them to make sure you don't recover old ground and that due diligence was done for the autoimmune big hitters like Lupus, Sjogren's, MCTD, etc.
Here's a reference of autoimmune diseases which if you page through you'll get to lab tests.
https://labtestsonline.org/understanding/conditions/autoimmune/start/1
It might not be autoimmune. Did they test for infections that can leave systemic effects like Lyme and brucellosis?
I know i was negative for the biggies, but don't think they tested for Lyme or brucellosis. I just received blood draw results from last week, and my fasting glucose was 104, which I believe is considered pre diabetic. But, that shouldn't be causing all these symptoms, I wouldn't think. What is TPO?
Right, 104 could indicate pre-diabetes but that's not going to cause a lot of obvious problems. I just picked brucellosis out because it can cause odd symptoms but you probably want them to test for Lyme for starters. Maybe a toxicology screen if you've been exposed to chemical or metallic agents, rare.
TPO is for a type of anti-thyroid antibodies present in hypo and hyperthyroidism and can co-occur with other immune diseases, but you say they tested for the big hitters. Unless you're having thyroid symptoms its probably a long shot as well.
I have so many issues, it's mind boggling! I don't know where to start. I research, but I have so many symptoms of so many things. The doctors all look like deer in headlights when I start going over all my symptoms. I would love to just feel normal again.
Symptoms are subjective. Tests are objective. That's why I said to collect the tests and see what looks in and what looks out. When there's a lot involved its got to be a process of elimination.
I started out with 6 little dark red spots on my legs woke up the next day with bumps bright red swollen and they even started to connect and become patches. The next day each bump had a black head or peeling like it i pick at it will leave a hole. I went to the ER and this doctor in training told me i had chiggers. (Little crab like red forest bug ) l dont camp and live in city. So i went and got second opinion and was told i have leukocytoclasttic vasculitis. Im so scared because the rash looks so horrible.and my legs look just like the site on internet. I was given a type of steroid which suppose to cure my system and stop the attack. Please pray for and i will do the same for all of you.
I forgot to mention that I went through a period of a couple of years where I felt beyond rotten. I kept going back to the doctor where they kept running more tests. I was put on a massive dose of augmentin as a just-in-case thing but they were stumped. I eventually collapsed and went into the hospital completely dehydrated. Turns out I was having thyroid storm, Grave's disease, and over this whole period nobody had thought to give me a thyroid panel. So, don't lose hope but assume nothing. Check those tests.
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As a non-physician, I shall give you my opinion, but keep in mind that my opinion might be completely worthless or DEVASTATINGLY DANGEROUS. My first impression upon reading about your symptoms is that you might have multiple sclerosis (MS), or perhaps some syndrome that is a differential diagnosis for MS, such as acute progressive multifocal leukoencephalitis or several other syndromes.
http://emedicine.medscape.com/article/1146199-differential “Multiple Sclerosis Differential Diagnoses”
From Wikipedia, “A person with MS can have almost any neurological symptom or sign, with autonomic, visual, motor, and sensory problems being the most common. The specific symptoms are determined by the locations of the lesions within the nervous system, and may include loss of sensitivity or changes in sensation such as tingling, pins and needles or numbness, muscle weakness, very pronounced reflexes, muscle spasms, or difficulty in moving; difficulties with coordination and balance (ataxia); problems with speech or swallowing, visual problems (nystagmus, optic neuritis or double vision), feeling tired, acute or chronic pain, and bladder and bowel difficulties, among others.”
https://en.wikipedia.org/wiki/Multiple_sclerosis#Signs_and_symptoms
https://en.wikipedia.org/wiki/Helminthic_therapy
If I thought I had MS, I might be crazy enough to try the following non-FDA-approved experimental therapy:
https://autoimmunetherapies.com/candidate_diseases_for_helminthic_therapy_or_worm_therapy/multiple-sclerosis_helminthic_therapy.html