Advice requested

[benji14]

Hi,

Seeking some advice, if I may please.

- for fourteen months I’ve had constant 24/7 fasciculations that are in feet and calves, particularly the inside edge of the left foot. It is constant. It is rare for 5 seconds to go by without one.
- for fourteen months I’ve had constant random fascics - it’ll jump from buttock to scalp to arm
- for fourteen months I’ve had issues with seeing light - bright lights cause afterimages of up to 3 mins, but also same problem with things like phones, tv etc
- for 12 months I’ve had significant thinning of head hair
- for 6 months I’ve had patches in my beard hair and the outside of both legs below the knee are almost entirely hairless
- for 9 months I’ve had discomfort in one calf muscle - feels strange but can walk
- for 6 months one side bicep has ‘felt’ weak. It is hard to hang up clothes on the line. I can do it but the arm aches and feels tired.
- for 4 months I’ve had a strange feeling down the right hand side of my tongue. It could be described as weak, or maybe feeling swollen or just a vague ache. It’s strange but doesn’t physically stop me swallowing.
- during this time have developed appendicitis and prostatitis.

I’ve had 2xEMG and have pasted one set of results. Both neuros have said they don’t know what’s happening, have seen brisk reflexes, one EMG showed fascics, the other didn’t, but apparently nothing else in the EMG to indicate ALS.
Both neuros have said to come back in 6 months and they’ll test again.

I’ve seen enormous amount of specialists and nobody can diagnose anything nor tell me if I’m dangerously unwell. The symptoms are progressing but MRIs, blood tests, CT scans and lumbar puncture have not revealed anything.

Have seen rheumatologist, endocrinologist, haematologist, dermatologist and nobody can offer assistance.

With the brisk reflexes, 24/7 fascics and progressive muscle problems (bicep, calf, throat) I’m obviously a little concerned.

My question is are these other symptoms familiar to anyone and can anyone offer advice?

Many thanks to anyone who may be able to offer some advice.

 

[KimT]

Have you had Covid? The EMG does not indicate anything wrong but you obviously have something going on.

If it were me I'd see an internal medicine specialist because there seems to be things going on that are not related.

I expected the EMGs to show fasciculations since you're having them non stop but the one you uploaded did not. Are the brisk reflexes everywhere or localized to one limb? Many people have brisk reflexes (I've had them all my life and they're actually less brisk now than they were when I was in my 40s.

Nobody here will have an answer for you except to say it doesn't look like ALS. What does your neurologist recommend you do?

 

[benji14]

Hi KimT, thanks for your reply.

Yes, this EMG didn’t show the fascics but the first one did. That neuro didn’t give me a copy. One neuro has told me to be treated for anxiety and the other appeared more concerned but couldn’t diagnose anything and told me to return every three months for repeat tests.

One neuro report simply said ‘brisk reflexes,’ the other ‘brisk reflexes, particularly in the lower limbs’ so I assume that’s generalised.

I’ve now seen 18 specialists in 14 months and the responses have ranged from ‘you have inflammation everywhere’ to ‘ALS can be hard to detect, it could be an unusual presentation’ (not a neuro) to ‘have you heard of psychosomatic?’

The one big struggle I’ve had has been that each doctor will only look at their little bit eg the urologist ‘you have an inflamed prostate. What caused it? I don’t know, that’s not for me to tell you’ or the neurologist ‘your ophthalmologist says the visual issues are neurological? Yes, but I don’t do eyes, that’s not my job.’

The dermatologist suggested an undiagnosed autoimmune condition that hasn’t yet become apparent (and offered my a trial of hydroxychloroquine(sp?) but the neuro said that my neuro symptoms wouldn’t be caused by that.

I’ve been clinging on to hope that it was anxiety, given that has been suggested a few times, but as it progresses - admittedly not a rapid deterioration - I find that theory hard to believe.

I do realise that many symptoms are not typical to ALS and don’t want to trouble people here unnecessarily; but I assume that I have one major issue and that most symptoms are sort of caused by that indirectly. I’m just very unclear what that one issue is.

 

[wishmobbing]

That is an enormous amount of specialists to have seen!
If you cling to the hope it's anxiety, do you have treated? Even if there are physical reasons for some of your symptoms at least a lot of them might be psychosomatic. You must be so exhausted and I hope you find psychological help. Many people find psychotherapy helpful during the diagnostic process or to get to the root of psychosomatic troubles.

 

[Clearwater AL]

Benji...

"I’ve now seen 18 specialists in 14 months."

(You must have excellent health care.)

Ok, what more can we do for you? Doubt them.?
Question their expertise?

Further...

"I do realise that many symptoms are not typical to ALS and don’t
want to trouble people here unnecessarily; but I assume that I have
one major issue"

One singular issue does not give an accumulative sum of ALS.

Finally...

"I’ve been clinging on to hope that it was anxiety, given that has been
suggested a few times, but as it progresses - admittedly not a rapid
deterioration - I find that theory hard to believe."

Continue to cling onto that hope... that's most likely a diagnosis.

 

[KimT]

Benji,
No matter what is going on I do thing therapy could help. If it isn't anxiety it's sure causing anxiety, so why not let a therapist help you through it.
I was curious if you've had Covid because it can cause some delayed symptoms. My cousin ended up with neurological symptoms and ended up with long Covid.