Follow up to my previous thread

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Maron987

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Hello everyone,

I am writing this as a continuation to my previous thread which seems to have been closed.

I suppose it’s because I haven’t updated my case since. I haven’t done so as I’ve been waiting for my results and for seeing the 2nd neuro as well.

I have been to the 1st neurologist on the 31st of March, as I said I would do, and was told that both my MRI (head and spine) and EMG were unremarkable.

I’ve told him that my symptoms had actually worsened but he couldn’t come up with anything other than “hypersensitisation” and didn’t send me for any further tests as he thought it wasn’t necessary.

So I, of course, wanted to believe in that and go on with my life but I kept feeling the same and even worse and as I kept researching about “hypersensitisation” I found out how it actually didn’t match with my symptoms at all.

Therefore, I’ve decided to go private and chose to book an appointment with a well known doctor.

I’ve seen him on the 06th of May and left feeling surprised, as he didn’t send me for any further tests and also didn’t tell me what my problem is.
I’ve told him all my symptoms amongst which also nasal regurgitation, something that has been worrying me a lot.

Another symptom mentioned to him was tongue twitches. He assessed my tongue and soft palate and said everything looked normal to him. He couldn’t spot any issues while examining me and did not suggest any further steps either, apart from telling me to continue taking Amitriptyline.

He said that what I’m feeling doesn’t match with the pattern of a neurologic condition and that my tests were unremarkable.

This was one week ago.
And for the last 4 days, each time I swallow, be it liquid or solid, is either going in my nose or windpipe, making me cough. I choked already once.

Because of this, I’m afraid whenever I drink or eat. I have requested to be referred to neurology once again and also have a referral to ENT due to TMD, where I will report my swallowing issues as well. But as of now, I don’t know when I will be seen as the referrals are yet to be reviewed.

Currently, I am mostly disturbed by the following symptoms:

- Difficulty swallowing as mentioned above,

- Numbness, tingling, “cold” pins and needles occurring on legs, arms, face, mouth including tongue (these come and go and occur daily - all over the body but mostly on the left side)

- Asymmetrical feeling of heaviness in legs and arms,

- Random dispersed twitches (sometimes one place twitching for a couple of days).

- Itchiness and tinnitus in left ear (this one is weird)

- Jaw tightness

Not knowing what causes these symptoms is really distressing me. Especially the swallowing issues. I really hope I will get an answer soon.

The neurologists, so far, couldn’t provide me with any answers.

“What do you think is going on with you?”
They always ask.

And it seems they always tend to want to convince you it’s not what you fear most but don’t actually struggle to discover the real cause.

I’ve attached my EMG report below, as previously promised. (done on 17th of March, 2021)

Thanks for taking your time to read this.
 

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ShiftKicker

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Previous thread here.

Hi Maron-

I don't think you'll find anyone here contradicting specialists who have examined you in person and who have performed an EMG- neither of which has found anything neurological. The folk here can't really help you get to the bottom of your symptom concerns- that really is something only a doctor can help you with. The good news though is that ALS doesn't seem to be an issue at all, so you may happily leave it in the dust as you move in another direction of search.

All the best
 

lgelb

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What you posted was the NCS, which doesn't bear on ALS particularly, as the EMG portion does. But if that has been normal, along with the NCS, that is a pretty definitive argument against any disease that affects the sensory or motor neurons directly, like ALS. As for the real cause, that seems likely to be systemic and so I would try to see a good GP who can help you narrow things down.

Best,
Laurie
 

Nikki J

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The emg is there Laurie at the bottom of the page and it is normal
 

lgelb

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Sorry about missing that.
 
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