Neurological Symptoms Question?

[Justin30]

Hey Everyone,

So I am curious if any of you on hear have had a similar symptom cluster to what I have?

Background info:

7-8 months ago 4 day flu followed by 12 day infection and there comes the ME or some other Neurological illness.

Symptoms I experience dailey:

- numbness in my throat (dysphagia)
- blurred vision
- muscle twitching from head to toe (face including eyelids, lips, neck)
- drymouth
- POTS (increases of 30 BPM upon standing) usually in the am only
- palpatations
- brain fog/memory problems
- numbness in hands while lying down
- cold feet
- diziness then sweats

I get a ton of other syptoms as well but the become overbearing at times.

Two things that Im curious about is whether or not you have had these symptoms and have they gone away?

Thanks,

Justin

 

[Old Bones]

Two things that Im curious about is whether or not you have had these symptoms and have they gone away?

@Justin30 Here's my response to your symptom list:

Numbness in my throat (dysphagia) - never experienced, but occasionally difficulty swallowing
Blurred vision - frequent, worsens with increased physical or cognitive effort, no better or worse than in early years
Muscle twitching from head to toe - yes, but improved compared with early years; increases with more activity
Dry mouth - never
POTS (increases of 30 BPM upon standing) usually in the am only - yes, but all day, worsens as day progresses Palpitations - yes, worsens with increased activity or more-disturbed sleep, increased compared with early illness
Brain fog/memory problems - yes, brain fog improved with thyroid medication; memory problems worse than in early years
Numbness in hands while lying down - yes, especially lying down on back, sometimes sitting, one hand at a time
Cold feet - YES, almost unbearable at times - use hot packs in insulated socks numerous times per day, worsening
Dizziness then sweats - dizziness, no; sweats usually only at night

 

[Justin30]

Ok...thanks old bones for the response. Are you able to function on a daily basis or you mostly bed or housebound? I know its a personal question and I dont mind if you do not respond.

I am currently house bound/ couch bound.

Also forgot that I have light and noise sensativity and a bit of tinnitus.

This illness is just wreched.

 

[Sushi]

Symptoms I experience dailey:

A lot of those symptoms fit with dysautonomia as well as some neurological symptoms. Dysautonomia can wax and wane--and it can respond to treatment. I've had some of those symptoms resolve, but not others. But you haven't been sick for very long so the outlook for recovery is pretty good from what we read.

 

[Old Bones]

Ok...thanks old bones for the response. Are you able to function on a daily basis or you mostly bed or housebound?

@Justin30 At times I have been mostly bed bound -- most recently three years ago. These days I am mostly house bound. I am able to manage personal care, although doing so puts me over my target heart rate. My husband handles most of the shopping and food prep, and the bare minimum of housework that gets done. By necessity, our standards have really slipped. I get out to socialize maybe once every two weeks for not more than a couple of hours. Adrenaline keeps me going under those circumstances. Sustained activity, (light physical or cognitive) causes a gradual deterioration.

My light and noise sensitivity is one thing that has significantly improved. Tinnitus, for me, started "late in the game" -- about five years ago. It is worst first thing in the morning.

 

[ahmo]

My neurological symptoms, including tremors, muscle twitches, extreme light/noise sensitivity, insomnia, also OI... all resolved when I'd gotten to a high enough dosage of B12. My brain and body remain very easily tired.

 

[Justin30]

Thank you for all the feedback. Just knowing that their are others struggling with this and having input from them really helps and I appreciate it.

Now they just need to find all of us a cure.

Im picking 25,000 mcg hydroxycabalamin injections tommorow.

Ahmo...did you have to go slow getting to that dose or are you on less of a dose?

 

[ryan31337]

Hi Justin,

Another echo, all of the above with the exception of dysphagia.

The fasciculation (twitching) seems to be resolved with multi-vitamin/mineral supplements, so potassium/magnesium, something like that. I'm hoping much of the rest can be helped with attention paid to ANS/circulatory issues, work in progress

Ryan