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Please help very helpful members, Rose, Wright, Alyoop etc...

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Old 06-09-2012, 01:10 PM   #1
Join Date: Apr 2012
Location: Illinois
Posts: 9
Amfamfamf HB User
Please help very helpful members, Rose, Wright, Alyoop etc...

Hello, I have been following this board since my symptoms began months ago. I would greatly appreciate any insight you could provide on my symptoms. After waiting almost three months to get into the neurologist I picked I had my appointment this week. My symptoms are as follows:
1.) began with numbness/buzzing feeling from calfs to feet and occasionally right hand elbow to hand.
2.) Began body wide fasiculations... very frequent. Feet, toes, buttocks, legs, face, tongue, etc... Sometimes the same muscle will twitch 24 hours straight..but mostly its one here and one there.
3.) at times if I am propped up on my elbows while laying on my stomach my right shoulder will quiver.
4) I have had some perceived weakness and burning in this right shoulder as well.
5) I noticed that my right thigh looks smaller
6) sometimes while lying in bed I will have a leg jerk or twitch..sometimes its at the end of a movement.
7.) I have an odd feeling on my palate between my uvula and tonsils..almost like my palate looks and feels as if its hanging low. The feeling comes and goes and is worse at night. I have not been choking or slurring words. I do feel at times like i am lying in the dentist chair and i have spit in the back of my throat they need to suck out..if that makes since.. like I need to swallow.. I am not drooling.

Neuro appt:
Neurologist noted brisk leg practially kicked her.. i do not know how many + it was..

She noticed muscle atrophy in the right thigh that I thought looked smaller before i ever asked about it.

She said I have no muscle weakness on examine. No weakness noticed in palate..and she didn't mention any other abnormalities.

I had an emg and nerve conduction study performed by a neurologist that performs them a few days a week. On average she diagnoses ALS once a week. She did six signs. The vastus lateralis,,, where atrophy was seen, calf , tibialis anterior (front of lower leg), paraspinal muscle in back, shoulder, between fingers.
The emg was normal except for FEW simple fasiculations noticed in calf.
The nerve conduction study was normal.

I have had multiple cbcs and celiacs panel, a false positive mono test. Low vitamin d normal b 12.

The neurologist started having me take a complex b vitamin and calcium supplement. I already take rx vitamin d once a week. She said the deficit could be from having quit breastfeeding in february.

She also mentioned inflammation of muscles and a possible muscle biopsy.

she drew CPK, ANA, ESR, AND A LYMEs panel.. I do not have those results yet.

If my emg does not look at the tongue does this mean I could still have als.. I find the upper and lower motor neuron confusing.

My neurologist said that I had certain presenting factors that do not fit with als.. but did not say what they were.

I a 29 year old female, an avid weight lifter.. 5'6 110 lbs.. 7 lb weight loss...
I squat 115 ..and am still able to do so.. I have not noticed weakness when lifting except during certain exercises where the load is over my head while lying.. For example when I do "skull crushers" my right shoulder where i have perceived weakness will quiver (even though this exercise is not specific to the back..but a tricep isolation exercise)

I just feel so in the dark.. and am having a hard time waiting for answers. It seems there are many things that could cause my symptoms.. Any advice as this specifically relates to als would be appreciated.

Will cpk always be elevated in als? Can upper motor neuron disease develop before lower... and therefore you have als but emg not catching it yet? Is it a rarity for an emg 3 months post symptom onset to be negative..or is this a common occurence. When do neuros do repeat EMGS..and how far apart.

I know a lot of the facts on this board are not entirely true.. and I value your information on the matter. Thank you so much for your time.

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Old 06-09-2012, 01:22 PM   #2
Join Date: Apr 2012
Location: Illinois
Posts: 9
Amfamfamf HB User
Re: Please help very helpful members, Rose, Wright, Alyoop etc...

I forgot to mention I had an MRI of my head and complete spine (cervical, lumbar, and thoracic) with and without contrast. All normal with mild degnerative disc disease in cervical and lumbar region as well as one mild bulging disc.

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