Any advice on my symptoms really appreciated

[Keteamal]

Im so sorry to post in this group. Please know that my symptoms have introduced me to this awful disease and I now donate and will support as much as I can.

I am here to ask for some opinions on my symptoms and whether anyone else has experienced anything similar. I know so many have been kind enough to help alleviate fears and point in the right direction of what's happening.

Approximately 9/10 months ago I would wake to numb arms. The sensation was as if i had slept on my arms. After a number of weeks of this happening I saw my GP who referred me to physio. This didn't help and eventually this sensation turned into all over internal vibrating / buzzing. I usually notice this most at rest or when tired but it is a constant buzzing feeling that stops and starts again quickly.

I saw my GP again who referred me to neurology. By the time I had my neurology appt I had been experiencing this for at least 8 months. I also had constant all over muscle twitches and arms and legs that feel like i have run a marathon after small tasks such as hoovering.

My neurologist has referred me for tests but the wait is currently 7/8 months so no answers anytime soon. All bloods came back fine with the exception of slightly high ESR (though online suggests not really high at all).

My muscle twitching is all over. I experience it on and off all day in all different places. It seems to shoot from one place to the next with no obvious triggers.

I have also in the last few weeks developed what I would describe as stiff toes and fingers. I can move them fine but they just seem slower. I also have lower forearm and feet aching which I presume is linked. would this be described as muscle weakness.

Not sure if there are other tests anyone would suggest in the meantime? All deficiencies and blood work were normal so that is ruled out.

Sending love to all on this group.

 

[lgelb]

Doesn't sound like ALS at all. Not knowing what blood tests you had, I would ask if you were worked up for rheumatological conditions and post-viral syndromes. I don't know if a physiatrist or rheumatologist would be quicker to see there than a neurologist.

It sounds trite, but I would also video your sleep and also double-check that your mattress and pillow are providing full support. You might also consider therapeutic massage, swimming in warm water, tai chi/ballet/Pilates/classical stretch, even though the physio was not effective. Not all physio is all that.

 

[Keteamal]

Thank you so so much. You mention post viral syndromes which has me thinking - 3 months before the onset of these symptoms I had extremely bad Glandular fever. Perhaps fhis could be linked. I will discuss this with my GP.