1. < Autoimmune Diseases

Weak, Sick, & Scared

Posted by dablues @dablues, Jan 10, 2020

I still have no idea what is wrong with me. Searching since November. Getting worse. Won't have an emg until the 14th but so much worse off now. Nausea, weak in the legs. Twitching, cramping in feet and off balance. Double vision. Don't know why no one could have diagnosed me by now. Two months later I know nothing! Appetite is good as I eat and nausea goes away for 10 minutes then back again. Lost some weight but have the flu. WBC is 3.7, Lymph%26.5, MONO%11.5, NEUT%60.9, BASO% 0.60, EOS%0.3, LYMP#, MCHC31.7, MCH 29.4, RDW 12.9, PLAT 291,. Those are some of the findinings in my blood work. Others not listed normal. I think ALS, or MS that is just my opinion, but am trying to act like I'm fine and happy. Hubby is in the hospital with flu, pneumonia, and Sepsis, so don't want to show him how bad I feel. He's 81 and I'm 78, Opthamologist today couldn't tell me much about the double vision. Still says Neuro should be handling it. Just sick of it all!

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Jan 30, 2020
In reply to @hmlynch44 "This describes me to a T. Do you take gabapentin? It helps me a little but..." + (show)
@hmlynch44

This describes me to a T. Do you take gabapentin? It helps me a little but I have been suffering for over 2 months now with all of this burning, brain fog, blurred vision and so much more that I’m just too tired to type. Do you have a LLMD. I am looking into seeing one or going to Mayo Clinic to be diagnosed/ tested for Lymes disease or co infectious disease. I have also been suspicious of internal shingles

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@hmlynch44 Hello and welcome to MayoClinicConnect. We’re a group of individuals who share health experiences, and what has worked and not worked. But, we’re not doctors so can’t diagnose or prescribe medications. You’ve mentioned that you may have Lyme disease. What doctors have you seen? Have you seen a rheumatologist? I hope you find some answers! It took about 10 months for my autoimmune disease to be diagnosed, a long 10 months.😢

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1 reply
hmlynch44 | @hmlynch44 | Jan 30, 2020
In reply to @becsbuddy "@hmlynch44 Hello and welcome to MayoClinicConnect. We’re a group of individuals who share health experiences, and..." + (show)
@becsbuddy

@hmlynch44 Hello and welcome to MayoClinicConnect. We’re a group of individuals who share health experiences, and what has worked and not worked. But, we’re not doctors so can’t diagnose or prescribe medications. You’ve mentioned that you may have Lyme disease. What doctors have you seen? Have you seen a rheumatologist? I hope you find some answers! It took about 10 months for my autoimmune disease to be diagnosed, a long 10 months.😢

Jump to this post

Hi there. I have only seen a neurologist at this time and am awaiting more testing. I have an HMO and everything takes forever. I am hoping to get a referral soon from my doctor to come to Mayo Clinic. After I get my test results back. I am suffering every hour sometimes second of everyday right now. It is awful

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80rosy | @80rosy | Jan 30, 2020

It isn't easy being undiagnosed hopfully you will get your answer soon. I have autoimmune thyroid issues mine has messed with my eyes some what I had a mild case of graves eye diease, I still get the head aches blurry vison but in remission for now. Hopefully the endocrinologist will check all the endo issues to rule things out.

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Jan 31, 2020
In reply to @dablues "There isn't much support you can get. He's home now, but I'm getting worse. I don't..." + (show)
@dablues

There isn't much support you can get. He's home now, but I'm getting worse. I don't know if I have MS, ALS, or what. But the double vision is worse, I'm nauseous and off balance. The burning in my body happens every night. Always when I sleep. I think I need an exploratory but they won't don one since they think there is nothing wrong. Panic attacks every morning. Sometimes all day. Sometimes not. I have an EMG coming up but haven't a clue what that will show if anything. I think there definitely is something wrong with my insides but test like colonoscopy, endoscopy fine but don't know if it could be on top of the organs. Feels like something is eating away at my insides. Weird but I'm getting weaker each day, and frustrated and angry.

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@dablues Good morning. I’m so sorry you weren’t able to get any help from the social workers at the hospital. Is your husband OK now and can take care of himself? You said that you’ve seen a gastroenterologist, but all the tests came back fine and they don’t want to do any surgery. Is this correct? It seems that you are suffering from maybe a chemical imbalance and surgery won’t help at all. Can you see doctors at a larger medical center than the one you’ve been going to? Many local doctors are very accustomed to seeing the usual problems and just don’t know where to begin on the real complex ones. This was a problem I ran into when I was finally diagnosed. None of the doctors had ever heard of the disease before! Lucky me. Can you try a larger medical center?

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