Quickly moving symptoms , in limbo

[Guest]

Hello, just a note on previous health issues.. Have had L4-5 surgery with drop foot and chronic pain after Co2 poisoning from broken heating systems and GERD..BUT 2 months ago thought I reherniated disk as had same symptoms of atrophy and spasms in same calf and twitching all over .

. Full spine MRI showed nothing EXCEPT hydromyelia in thoracic region. (not a unusualy thing with back issues) but the spasm twitching has turned to whole body with alot of spasisty and very quick muscle thinning atrophy all over. Ribs, neck, both calfs, breathing has become hard to get a full breath in and swallowing difficult. My eyes seem to be blinking alotvv

I will attribute some symptoms tho to smoking and Gerd for years. I have been on numerous meds that can cause many problems also. I don't want to create something that's not.

I have had full body EEG , full MRI of spine and brain , passed nuro testing they do in office , all blood work normal. This is good sign I know..I have very good strength for having drop foot at one time and major back problems. I can say I'm more weak but have been since surgery.

Dr. Feels confident no ALS or MS but said she would send me wsu for more studying to calm my mind. She did admit I needed to see a nuromuscluar Dr. Which I will do

Just in last 2 weeks twitching and obvious muscle change is apparent and I find myself having to remind myself to relax muscles. I'm not completely oblivious to muscle issues as a massage therapist and I very clearly can see quick changes like all muscle tuened to mush and seeing clavicle clearly and ribs for first time I felt pretty good leaving her office other day but not right now.

Thoughts anyone. Thank you and happy Easter.

 

[Guest]

You do not have ALS...follow your Dr's orders and see the specialist they send you to but you had no clinical weakness to the point of "having very good strength"...in just the 2 weeks since you last saw your Dr I do not believe that ALS would turn your muscles to mush as you described.

I am not a Dr and you should follow your Dr's orders just providing you with my humble opinion that you do not need to stress out about ALS.

 

[Guest]

My thoughts are this:

With full body EMG--I'm assuming you didn't mean EEG, as an EEG is only done of the brain--that you don't have ALS. Congrats.

Atrophy happens after the muscle dies--not before. What you're seeing is weight loss, not muscle loss. Normal EMG, normal neuro exam, normal everything means it's NOT ALS.

I'm not sure what brought you here--but nothing in your symptoms sounds even remotely like ALS. Not the eye blinking (that's a new one) Twitching doesn't mean ALS. We've said that here so many times it's becoming ridiculous. Read the sticky posts, please. They explain twitching.

The damage in ALS happens slowly at first--over time. By the time a patient notices symptoms--there is a loss of function. They can't Do something they could do before--such as open a jar or swallow a glass of water, or talk without slurring or walk up the stairs without tripping due to drop foot. After the CLINICAL (read as DIAGNOSED BY A DOCTOR WEAKNESS) weakness is observed, the patient is usually sent for an EMG and various blood tests and MRI scans--which you've had.

I can't speak to the chronic pain caused by your Co2 poisoning and GERD. Neither causes ALS to my knowledge. I've had GERD for years--and take prilosec two times a day to control it.

I've got several ruptured discs in my neck and spine. Again--I can relate to chronic pain--but I can't for the life of me imagine what in your symptoms has led you here on an Easter Sunday thinking ALS when the tests for it have come back clear.

Your swallowing issues sound strange. What do you mean by swallowing issues? People with Bulbar ALS normally first notice slurred speech, then difficulty with liquids.

atrophy happens months after the weakness--not days or weeks.

Relax and give the doctors a chanced to figure out what might be going on and get ALS out of your mind. Stay off the Dr. G that isn't helping you at all.

Good luck

 

[Guest]

Yes , it's really just started with atrophy with left calf and same symptoms as herniations, but it's amazing how much atrophy and twitching there is now. But your correct.. I cannot understand how it would happen when still pretty active and plenty of strengh. I think that's why she (Dr) felt confident no ALS or MS, I have felt somewhat confident in that untill I keep noticing the muscle change. It's something , I cannot imagine it could be that great with atrophy that happens quickly. I am on some medications long term And family dr looking into that. Thank you for your time.

 

[Guest]

I tried replying yesterday--but apparently it couldn't be approved--though I used no links or anything. CLEAN EMG means no ALS. I'm assuming you meant EMG not EEG--as an EEG is a test done on the brain.

Let them sort you out--it's not ALS

 

[Guest]

Yes thank you , I am confident that they are correct in the no ALS diagnosis. They are sending me to a neuromuscular Dr to look at dystrophys with a muscle biopsy. The amount of muscle wasting is been very fast. So my 2 biggest symptoms are twitching and muscle loss which will get figured out at university of WA I'm sure. Thx.