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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dablues | @dablues | Jan 18, 2020
In reply to @janyce "Your symptoms are very similar to what mine have been for about 3 years. This all..." + (show)
@janyce

Your symptoms are very similar to what mine have been for about 3 years. This all started from being diagnosed with Bell’s palsy in April 2017. I was left with a droopy eye and mouth. My double vision began about 5 months later. That lasted 9 months then seemed to go away. It returned 6 months later. I spent many months with ophthalmologists. Many tests and no diagnosis. Myasthenia Gravis was suspected but blood tests negative. A new Ophthalmologist diagnosed optical M G in th spring of 2019. When I became ill with bronchitis last summer, I was admitted to hospital and was told that 15% of people with normal blood tests for M G have this autoimmune disease. Flares are triggered by illness and your flu could be doing this.
See a neurologist and be checked. I am being treated and am having some relief.
Don’t give up. I pray that you and your husband have big improvements soon.

Jump to this post

I have a neurologist but no one seems to help. Had to postpone the 14th of January for the EMG and now can't get one done until February. Nothing has changed for the better.

REPLY
1 reply
dablues | @dablues | Jan 18, 2020
In reply to @fourof5zs "@dablues Some great replies to your post. .. they contain many great suggestions. I want to..." + (show)
@fourof5zs

@dablues
Some great replies to your post. .. they contain many great suggestions.

I want to ask: have you have fallen within the last year? Are you having headaches?

If you have a relative or good friend by your side it would be a great help to you. I know it can be hard to ask for help from those close to you.. you know they have their own problems, but sometimes you need to. You may actually be helping them by asking for help. A distraction from your own worries can be good sometimes.

I know how worried and stressed you are about your husband. The worry and stress can affect your own health. Be of comfort that others have him and you in their thoughts and prayers.

If you just want to talk.. I am here. You can always private message me.

ZeeGee

Jump to this post

Thank you! I haven't fallen and some headaches, not a lot.

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Wright Lea | @leawright11 | Jan 18, 2020

My Migraines are unbearable!! Neurologist had me on Botox Shots which helped. Haven’t had Botox Injections since May 2019. He retired. New Neuro. on aimovog. Not lasting. Cervical Dystonia. Optipical Nerve Block was a disaster! Seeing another new Neurologist next week. Terrible pain from Cervical Dystonia, too! Any suggestions? I’m desperate!! Thank you!!

Please Reply,
Eleanor

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2 replies
Mentor
Becky, Volunteer Mentor | @becsbuddy | Jan 18, 2020
In reply to @leawright11 "My Migraines are unbearable!! Neurologist had me on Botox Shots which helped. Haven’t had Botox Injections..." + (show)
@leawright11

My Migraines are unbearable!! Neurologist had me on Botox Shots which helped. Haven’t had Botox Injections since May 2019. He retired. New Neuro. on aimovog. Not lasting. Cervical Dystonia. Optipical Nerve Block was a disaster! Seeing another new Neurologist next week. Terrible pain from Cervical Dystonia, too! Any suggestions? I’m desperate!! Thank you!!

Please Reply,
Eleanor

Jump to this post

Hello @leawright11 , you might want to check out this discussion to see if there is something that might help you. https://connect.mayoclinic.org/discussion/chronic-migraine-relief-suggestions/ Since the aimovog is not helping you, have you returned to the neurologist and discussed this? I’ve asked our moderator to maybe move your post to the one discussing chronic pain, if that’s ok

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Jan 18, 2020
In reply to @dablues "I have a neurologist but no one seems to help. Had to postpone the 14th of..." + (show)
@dablues

I have a neurologist but no one seems to help. Had to postpone the 14th of January for the EMG and now can't get one done until February. Nothing has changed for the better.

Jump to this post

@dablues Have you had a chance to talk to the social workers at the hospital where your husband is. What have they said? Are they able to give you any support?

REPLY
1 reply
Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Jan 19, 2020
In reply to @leawright11 "My Migraines are unbearable!! Neurologist had me on Botox Shots which helped. Haven’t had Botox Injections..." + (show)
@leawright11

My Migraines are unbearable!! Neurologist had me on Botox Shots which helped. Haven’t had Botox Injections since May 2019. He retired. New Neuro. on aimovog. Not lasting. Cervical Dystonia. Optipical Nerve Block was a disaster! Seeing another new Neurologist next week. Terrible pain from Cervical Dystonia, too! Any suggestions? I’m desperate!! Thank you!!

Please Reply,
Eleanor

Jump to this post

Hello @leawright11. You may notice I removed your email address and telephone number. We do this to protect your privacy from potential spammers and commercial sellers as Mayo Clinic Connect is a public site and anyone can see your posts. If you wish to communicate with a member directly, it is best to use the Private Message function. You can use this function by clicking on a members username and then clicking on the envelope symbol in their profile.

REPLY
ladyvol | @ladyvol | Jan 24, 2020
In reply to @janyce "Your symptoms are very similar to what mine have been for about 3 years. This all..." + (show)
@janyce

Your symptoms are very similar to what mine have been for about 3 years. This all started from being diagnosed with Bell’s palsy in April 2017. I was left with a droopy eye and mouth. My double vision began about 5 months later. That lasted 9 months then seemed to go away. It returned 6 months later. I spent many months with ophthalmologists. Many tests and no diagnosis. Myasthenia Gravis was suspected but blood tests negative. A new Ophthalmologist diagnosed optical M G in th spring of 2019. When I became ill with bronchitis last summer, I was admitted to hospital and was told that 15% of people with normal blood tests for M G have this autoimmune disease. Flares are triggered by illness and your flu could be doing this.
See a neurologist and be checked. I am being treated and am having some relief.
Don’t give up. I pray that you and your husband have big improvements soon.

Jump to this post

Hi! I notice several symptoms that are similar to the neurosarcoidosis that I now live with. Sarcoidosis is like other autoimmune diseases and can attack most any organ. It can cause facial palsy when it hits the nervous system, but it is a very hard disease to diagnose because it is not restricted to one body system. It usually starts in the lymphnodes in the lungs, but not necessarily. It commonly affects the eyes and vision. A rare disease doctor, critical care specialist, rheumatologist, or any specialist in sarcoidosis can help. Unfortunately, they are hard to find. Often, the patient has to mention it, then the doctors start looking at everything differently.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jan 24, 2020
In reply to @ladyvol "Hi! I notice several symptoms that are similar to the neurosarcoidosis that I now live with...." + (show)
@ladyvol

Hi! I notice several symptoms that are similar to the neurosarcoidosis that I now live with. Sarcoidosis is like other autoimmune diseases and can attack most any organ. It can cause facial palsy when it hits the nervous system, but it is a very hard disease to diagnose because it is not restricted to one body system. It usually starts in the lymphnodes in the lungs, but not necessarily. It commonly affects the eyes and vision. A rare disease doctor, critical care specialist, rheumatologist, or any specialist in sarcoidosis can help. Unfortunately, they are hard to find. Often, the patient has to mention it, then the doctors start looking at everything differently.

Jump to this post

Hi @ladyvol, Welcome to Mayo Clinic Connect. Thank you for sharing this helpful information. You mentioned you now live with neurosarcoidosis. Are you able to share any suggestions that help you live with the symptoms you have?

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dablues | @dablues | Jan 30, 2020
In reply to @becsbuddy "@dablues Have you had a chance to talk to the social workers at the hospital where..." + (show)
@becsbuddy

@dablues Have you had a chance to talk to the social workers at the hospital where your husband is. What have they said? Are they able to give you any support?

Jump to this post

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.

REPLY
2 replies
hmlynch44 | @hmlynch44 | Jan 30, 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.

Jump to this post

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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