Weak, Sick, & Scared

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.

@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

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

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.

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

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.

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.

@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?

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.