New member with a list of symptoms

[GIB1872]

Hi there,

I am wondering if anyone has had similar to experiences to what I've been going through and can offer any insight? I am really struggling at the moment with everything due to these ongoing issues.

A brief introduction is I'm 32, male, based in Scotland - I've had ongoing issues for around 2 years and haven't had much insight or help at all from neurologists. I've had diagnoses from BFS to FND to CFS. I've also never suffered anxiety or depression although this has majorly changed my life.

Symptoms:-

24/7 muscle fasciculations (ongoing since February 2022). Legs, arms, spine, mouth, tongue etc.
Muscle weakness and muscle loss in left arm, right shoulder, neck, back.
Fatigue like I can't describe and breathing issues (cannot take a full breath).
Permanent left arm stiffness in my bicep (can you imagine the tightness of a blood pressure monitor?)
Severe cognitive changes and personality changes. I feel drunk 24/7, I struggle to offer insight (I'm not stupid, but I feel stupid now), apathy etc. This is the worst thing because I am trying so hard to push through with work etc but it's affecting both my professional and personal life with relationships.
Awkwardness/rigidness in body and coordination.
Facial weakness when speaking (only I notice that), breathlessness when speaking.
Easily startled

I had a recent MRI and EMG which were fine apparently, although the EMG did show fasciculations in my left arm and hand. Neuro noted I had brisk reflexes and jaw jerk reflex (makes sense as I am easily startled now for example when someone comes into a room without me knowing they're coming) but really I am no further forward.

Thanks for reading.

[flatcap]

Hi, GIB1872! Welcome to BrainTalk.

I am sorry to hear of your plight. Yours sounds like quite the laundry list of symptoms.

Regrettably, you will find things pretty quiet around here (aka, dead). The only exception is the MS forum, which might not apply in your case.

The MS forum is also pretty slow, but we do have a regular chit-chat thread going on. You should drop in, even if you just want to talk. Meantime, I wish you the best.

[agate]

Welcome, GIB1872!

Though nobody here has any medical training, many of us have had years of coping with chronic neurological problems of various kinds, and sometimes we can supply shortcuts to information that might be helpful.

I wonder if you've tried doing a Google search for "hyperreflexia," for instance? Your description of your brisk startle response sounds like something that happens with hyperreflexia, which you've mentioned as being noted by your neuro.

You might find some other clues to what might be going on if you follow up on some of the Google search results.

Also, you don't mention any medicine you're taking but sometimes some medicine (or a couple of meds interacting with one another) can cause a lot of problems. You might want to look up any med you're taking and see what the known side effects are. You might want to check into any supplements or over-the-counter meds you're taking too.

That's just a starting point, and maybe the doctors have already looked into that aspect, but it won't hurt to double-check.

[weirdone]

I too have had some of your symptoms and no real clear answers from 3 neuros. Although my symptoms are not as extreme as yours. I definitely have the over exaggerated startle response - and when anxious or excited my speech slurs. When anxious or cold my left leg stiffens standing or walking - if sitting or laying down tends to shake. What triggered your symptoms? Any thing that happened around the on set of them? MRIs 18 months apart ruled out MS and a dopamine trial ruled out Parkinsons - last Neuro diagnosed minor stroke. But symptoms just don't line up with that - to me at least.