[bny806]

Hello, ANY help is greatly appreciated.. I am in limbo time trying to figure out what is going on.. I have one dr that said he was concerned for ALS, one said maybe CIPD.. and others said "i'm complicated" and don't have any idea.. ugh..
i'm a 31yo female (8 months post partum).. Anyhow I would love to hear if symptoms could really move this fast for ALS.. I had some big GI issues the past few months with a lot of weight loss with it.. I was presumed celiac.. so starated gluten free diet (8 weeks ago now). My intestines seemed to heal and thats when my neuro symptoms started
8 weeks ago - felt like my right knee was "flopping" thought nothing of it,, one week later both forearms achy and extreme fatigued feeling.. my right leg and both arms woke me up every single night feeling like they were asleep and cramping - all over fasiculations started (all over!! I however have had muscle twitching in both legs x 3 years after walking any period of time or working out- first started when pregnnat with my daugher and i had bad hyperemesis, so again probably malnourished a bit).
6 weeks ago all finger tips especially thumbs weak- always, it doens't come and go. the joint at the base of my thumb is especially noticable when I try to pick things up.
during this time ALL over muscle fatigue- ie going to the restroom tuckered out my abdominal muscles after the slightest strain.
1 week ago the extreme muscle fatigue has now moved up to my shoulders and neck and worse in my hips.. hands remain the same- loss of fine motor skills etc.
1 week ago slurred speech starts.. swallowing feels odd- choking.. My tongue just feels wierd, almost numb.. when I looked at it it is asymmetric with the underside looking very odd and the top of it has the normal grove in the center, plus a grove on each side.. that I don't remember being there..

I'm worried sick.. No one can figure out whats goign on- negative head and neck MRI, B6 was elevated (I was on supplements), b12 normal and all other tests beside slightly elevated ANA have been normal
My EMG was performed by a physiatrist that said it was all normal with the exception of demylenation on one leg. I had a few fasics on the EMG, but he said "they don't go the direction that ALS fasics go" not sure what that means.. A neuro who looked at that EMG report said everything was slow- that my nerves/muscles were functioning like a 90 year old

Anyhow.. this all seems like it has happened so fast, can ALS go that fast? My twitches have improved, though they are still there (took anxiety meds the past few weeks after being told ALS was a concern). Lyme tests are pending. Thanks in advance to any advice yall can give me.

[bny806]

I meant to add (not sure if this will help) my facial muscles are very fatigued.. If i laugh they ache and tremor a bit for hours afterwards.. by the end of talking a lot I can barely seal my lips...thanks again for any insight

[Liftyourhands7]

Really this does not sound like ALS especially because your EMG was almost clear, I also was concerned with this disease but 2 EMG's Are clear, please try not to be concerned with having ALS, your symptoms could be so many other things! Jan

[bny806]

thank you so very much for your response! I sure hope your right!!! My new neuro is goign to repeat an EMG , he is a specialist in neuromuscular dz, so i'm extremly nervous!!

[Liftyourhands7]

I am sure your tests will be fine, I will pray for you, please come back and let us know the results of your tests, God Bless you! Jan

[B. Zolot]

Originally Posted by bny806

I meant to add (not sure if this will help) my facial muscles are very fatigued.. If i laugh they ache and tremor a bit for hours afterwards.. by the end of talking a lot I can barely seal my lips...thanks again for any insight

I'm new here (this is actually my first post). I don't know what you have but it does not sound like ALS to me either.

[4-eyes]

Hi there,

Have you been checked for myasthenia gravis? You have many of the symptoms, and it's not uncommon for it to manifest itself post partum (mine did).

Good luck!

[bny806]

Thank yall so much for your replies!
My appointment got moved up after the dr's reviewed my chart to this past wednesday.. So we went and spent many hours with the dr's, they were great and spent a lot of time with us, which was really nice - I was with them for almost FOUR hours, which is unheard of these days!

Great news was they did an EMG right there, the ALS Dr performed it and it was normal, so no ALS- THank God!! However, they were perplexed, how do I have focal weakness, muscle atrophy - all which they saw on clinical exam and a normal emg.. They say I sound like a Guillian barre/cidp, however with clean emgs, negative LP and reflexes normal/brisk it just doesn't fit..
So, they looked stumped.. they really weren't sure what to think, which was kind of unnerving and now we really don't know where we stand.. They ordered more tests and sent them to mayo, they said they should get them back next week, and also are scheduling a skin/nerve biopsy.. We may try a IVIG trial here in the coming weeks to see if it helps.. so I feel so incredibly grateful/thankful, however things just aren't adding up which is strange and makes me uneasy!
4 -eyes.. I had the MG panel that was negative, but it didn't include the Musk test.. I do have a triple furrowed tongue.. They didnt send Musk to mayo, which I dont' understand why not. if they don't really know whats goign on, whats the harm in sending another test, you never know! I'm goign to be an atypical presentation of something!! I do get double vision when tired, slurred speech which fatigued at the end of the day with swallowing a little difficult, and eyelids have changed shape and are a little more droopy..
I also fatigue on my clinical exams with repeatitive strength tests, and stay weak for the rest of the day though, and sore the next day!
I don't know anything else that can have a triple furrowed tongue do yall? mine looks pretty classic.. though the fingers/thumbs are always weak and never get better with rest.. so I don't know that that part fits with MG.. ugh I have no idea, I just hope someone will!

Thanks so much yall , I really appreciate yalls replies! Hope yall are well!

[4-eyes]

It sounds so much like MG to me. I have MuSk.

As for the hand weakness--I have hand weakness, but much more likely in your case it is "mommy's thumb." You can look it up, it's real!

Sometimes, especially with MuSk mg, it's not detectable with a simple EMG. A single fiber one is needed. Hopefully you will get the MuSk thing done soon.

If you have a sudden decrease in problems, especially inability to swallow saliva or breathing issues, please go to ER. Just tell the ER doc that you are in the diagnostic process, with MG being at the top of the list.

Good luck!

[bny806]

Thanks so much!!! I do have some big babies- so I can see how that could exacerbate my hand/thumb issue!!
I will be giving my neuro a call tomorrow and asking for the Musk testing.. .. I would be SOO excited to have an answer, and one with a treatment too! It would be great to get treatment and starte feeling better, I am tired of my face especially being too tired to smile (I talk and smile a lot usually)!
I'll let ya know how it turns out! Thanks again so much for your help!!! I really appreciate it!