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Maron987

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Hello everyone and thanks for taking the time to read this one. (Yes, I have read the “read before posting” part and sorry for the long post)

I would like share with you the symptoms that I am experiencing since the 10th of February.

This started with the 4th and 5th finger of the left hand feeling “weird” when flexing and extending them. Shortly after, the forearm (especially the ulnar side) of the same arm started to feel the same.

About a couple of days later, I started to have almost the exact same feeling on the right hand and forearm accompanied by some twitches under the elbow.

Another couple of days later, I felt a shooting pain which lasted just a couple of minutes in the right side of the biceps area of the right arm.
After that, in the same day, I felt two episodes of shortness of breath which both lasted about 20 to 30 mins. Didn’t understand why. It was as if the air I was inhaling wasn’t enough no matter how I breathed in.

Next morning, I noticed another sensation in my body. During breakfast, I noticed a slight change in my swallowing which just didn’t feel the same. I wasn’t choking on anything but the way it felt was noticeably different. Felt like a globus sensation.

I got an appointment with my GP and told him everything. He didn’t seem worried at all but still ordered blood tests which came out fine. They checked for C Reactive Protein, Erythrocyte Sedimentation Rate, Rheumatoid Factor, Serum Ferritin, Serum TSH, Serum B12, Anti-CCP Antibody Level and Anti-nuclear Factor. He still wanted to see me the next week and the week after. He also prescribed me Amitriptyline.
The last time I saw him he decided to book me an MRI of brain and spine. I should mention that his attitude was quite dismissive and overlooking.

Meanwhile, I started to feel tingling and numbness in different parts of my body such as feet, legs, face, inside my mouth and twitches in various parts of my body. However, in the last week or so, I haven’t been feeling this particular numbness and tingling but weakness and twitches remained. But twitches are now more localised, I feel them in the same areas where I feel the weakness. I also feel the weakness in my legs, prominently below the knees and in my feet.

Before seeing my GP, I had actually gone to A&E 3 times as I was scared about what’s going on with my body. These were because I had the episodes of shortness of breath more times. 2 of the times I went there I was sent home without any further investigation. And the 3rd time I went I was finally transferred to ambulatory care where 2 neuro registrars assessed me. The first one wasn’t sure but the second one booked me an EMG, which is in 4 days, and a neuro appointment which is at the end of the month.

Going forward, my symptoms were kind of stable until about a week ago. Now I feel, my voice has changed a little bit, it sounds raspy and breathy.
The weakness in the areas I mentioned feels more accentuated, my throat feels tighter, I can’t feel my swallow well, I make gurgling sounds even after swallowing my saliva, also after drinking water. Also noticed a slight asymmetry in the soft palate rise upon saying “aa” or “kaa”.

Foot arches twitching, the 1st and the 4th dorsal interosseous of left hand twitching, the ulnar side of both arms twitching, the thoracic area of my back twitching, legs are randomly twitching, face muscles between my nose and eye on the left twitching.

First, I thought it could be CIDP as tingling and numbness were present for a while. Then, these disappeared and I said it could be MMN as it felt pure motor. Then, as my voice and swallowing changed more, this time I thought these resembled to MS and ALS.

I know I still need to see the neurologist but I was wondering what your thoughts would be on this as I am quite desperate for answers.

On a side note, I think I should also mention that I had a neck MRI on the 16th of January as
I have a severe neck pain ongoing for more than 2 years so my physiotherapist wanted to see what’s going on. Results: Multilevel disk dehydration, minor disk bars at C4-5, C5-6, C7-T1 for which he said normal for my age(33). No spinal stenosis or neural impingement. No cause for my symptoms could be identified.

Does anything I mentioned above sound familiar to you?

Once again, thanks for reading.

Maron.
 

Clearwater AL

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Maron, "(Yes, I have read the “read before posting” part and sorry for the long post)"

Really ?? Your writing and composition skills are good but I wonder about your
reading comprehension skill. Maybe read it over again slowly line for line.
Don't skim read it... as many do.

Then... "No cause for my symptoms could be identified."

And... "I know I still need to see the neurologist."

(Nearly 1,000 words, 28 paragraphs - 78 lines.)

Am I reading this wrong? All you have posted above and you haven't seen a
Neurologist for a complete evaluation yet/first? Yes, one booked an EMG from just
an ER visit? Usually it doesn't work that way.

Anyway, glad you have an EMG booked. With all symptom you have posted I'm
at guess why that hasn't/wasn't been considered previously.

Whatever...
 
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Maron987

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Hello,
Many thanks for your reply.

"No cause for my symptoms could be identified."
This part was the conclusion of the neck MRI.
At the time when the MRI was requested, I was only feeling the severe neck pain so this MRI wasn’t related to me complaining about other symptoms mentioned in my post.
I wanted to mention the neck MRI as I thought it might be relevant to the whole story.

That neck MRI was done on 16th of Jan 2021.
All the other symptoms mentioned in my post started on the 10th of February 2021.

If I am allowed I will post the updates here about my EMG (17th of March) and MRI of brain and spine (25th of March) and what my neuro says about them as he’ll have them to discuss with me (31st of March).
I now recognise that I couldn’t reflect a proper chronology in my post and that might’ve looked a bit confusing, sorry about that.

Very best regards.
M.
 

Bestfriends14

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Yes, please do post the EMG results when you get them. It helps future posters in this sub-forum to know why it's not ALS when we hear certain symptoms from worriers.

Thanks
 

lgelb

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There is no reason to think of ALS. It does not present in every region and myotome within a matter of days as you report. I am sure the EMG will be reassuring in that regard. Yes, please post it.

If you don't trust your GP, by all means seek another. I think that relationship will be key for your health overall, going forward.

Best,
Laurie
 
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