als after five years

[stef03]

HI I AM 46 YEAR OLD ,AND I HAVE A BIG PROBLEM THIS IS A STORY:I NOTICE MY FIRST FASCICULATION FIVE YEARS AGO IN MY FACE AFTER THAT FOR  FIVE YEARS I HAVE FASCICULATIONS ALL OVER MY BODY I HAVE CRAMPS AND NUMBNES IN MY LEGS FACE AND HANDS I HAVE DONE THRE MRI OF MY HEAD LAST ONE THRE MONTHS AGO WITH SPINAL MRI IN MY SPINAL MRI SHOWED MODERAT COMPRESION OF SPINAL COLUM IN C5-C6 LEVEL,I HAVE DONE SIX EMNG LAST ONE THRE YEARS AGO AND ALL OF THEM BECOME NORMAL,I HAVE DONE LOT OF BLOD TESTS AND VISIT MANY NEUROLOGYST BUT STILL WITH AUT ANY ANSWER ABOUT MY SYMPTOMS .IN LAST TWO MONTHS I HAVE WORSENES OF MY SYMPTOMS LIKE EXTREMLY FATIGUE,FASCICULATIONS,LEG AND HANDS WEAKNESS MORE IN MY RIGHT LEG AND HAND ,MY FACE IS LIKE MASK,I DONT NOTICE ANY ATROPHY IN MY MUSCLES.I HAVE QESTIONS ABOUT ALL THIS CAN THIS STILL BE A ALS SHOULD I NEED TO DO ANOTHER EMNG,AND WHAT ELSE CAN IT BE WHEN YOU HAVE ALL SYMPTOMS OF ALS,I AM EXTREMLY SCARED ABOUT ALS
ANY SUGESTION FOR ME WILL BE VERY IMPORTAN.SORY FOR MY ENGLISH,THANK'S

[NanBot]

My brother has these same issues.  Normal bloodwork and normal EMG.  Please look at IBM disease.  It’s what Peter Frampton has.  They are looking into this for my brother.  In order to diagnose this you HAVE to have muscle biopsy’s. The only way this is diagnosed.
Hopefully you will get a diagnosis and wishing you all the best.

[NanBot]

My brother has these same issues.  Normal bloodwork and normal EMG.  Please look at IBM disease.  It’s what Peter Frampton has.  They are looking into this for my brother.  In order to diagnose this you HAVE to have muscle biopsy’s. The only way this is diagnosed.
Hopefully you will get a diagnosis and wishing you all the best.

[Jenny Wren]

My symptoms are weird, very weird. I get little cold feelings that go through my body, like someone injected ice cold water in my veins, these are random, they usually occur in my legs. They happen other places also, like my back, or sometimes in my arm, they only last a second, then gone.  I had a brain MRI in april, it was normal, and just in Sept a c-spine, they found a bulging disk at C-3, C-4, the doc says that this is the cause for my neck/head pain, I also get facial tingling upon certain neck movements.  Its these weird sensations that I get that drives me crazy, thats the reason for the buspar.  About 5 years ago I starting taking Prozac, I had these same feelings for about the first 2 weeks, then they went away, but would pop up sometimes later.  The doc said that sometimes when you take the Prozac you will have more anxiety the first few weeks, that is why I kinda think that is what my problem is, because the first few weeks symtpoms were the same as before the Prozac just worse.  I don't know, but I did have the muscle twitches with the Prozac also.  He also gave my xanax to take when I took the Prozac before because of the anxiety that went alon with it the first few weeks of starting the med.  I never took it because I was so tired with just the Prozac, and I didn't want to be sleepier than I already was.  I asked a question on another healthboard about the muscle twitches and buspar and a few people replied saying that they had these too with it.  I hope someday to wake up and it be gone, but this has been going on for 6 years, and I don't see no hope. The xanax lessens these feelings alot, its just really addictive.  So whats worse, anxiety or trying to wean off of xanax?  I wish you the best of luck with your tests, let us know how everything goes.  I will say a prayer for all of us sufferers with no diagnosis, its very nerve racking, God bless, hang in there.  Jen

[Springbrock]

I started out feeling like I had something caught in my throat, then 2 days later my arms got very heavy, neckache, dull headache, heavyness in chest,brain fog, just did not feel right. Had all sorts of tests mri,mra,thyroid, blood,ct scan of neck,etc.. all normal well My doctor thought it was anxiety so he put me on busiprone during day and ativan at night. With in a few days of taking busiprone I started feeling bubbling or popping in muscles and my legs got heavy. Had emg it was normal. It has been 11 weeks. Just last sunday the heavyness let up every where but my chest. Now I have popping all over body at rest, and heavyness in chest. I had abnormal ct of lungs this week and will find out about that next week. What are all yours?

[Jenny Wren]

Every once in a while I would have a muscle twitch, which I never paid attention to, but yes, they are worse since starting the buspar.  What are your other symptoms?

[Springbrock]

Did your muscle twitching start after busiprone?

[Springbrock]

They thought I  had lyme but my western blot was only a 2 which is not a positive. I am on 30 mgs a day. 15 in morning 15 in afternoon. After I started taking it I started with the muscle jerks or fasciculations. They are quick and all over my body. I have been on busiprone since 9/27 and see no change. I never felt anxious to begin with, But now that I have the abnormal ct I am afraid to go off it because I feel I may need it if I get bad news at doctors.

[Jenny Wren]

If you don't mind me asking, don't you have Lyme, or being treated for Lyme?  The buspar thing is amazing to me, I had weird feelings, that my doc said was anxiety, bug crawling sensations, but only while wearing clothing, this seemed to bring them out.  I have been on buspar for about 2 1/2 weeks, my muscles are twitching like crazy, little cold sensations going through my body, its awful.  How many mgs are you on?  I started taking this for anxiety to try to calm myself down, now my symptoms are worse.  I'm only on 15 mg a day.

[Springbrock]

I wonder how it is you know that these are fasciculations? For about 5 weeks I have been on busiprone for anxiety. They diagnosed anxiety due to not finding anything else wrong with me. Heaviness in arms, neck ache, heaviness in chest feeling of something caught in throat etc.. Well A day or so after I started busiprone I started having like bubbles all over. My legs, arms, back  the minute I rest. I had a normal emg he said he saw no fasciculations.I would say at one rest peroid I will feel 10. But they are so quick by the time I look it is gone. Its like a bubble pop. Just one pop and gone. I am not sure if these are muscle twitches or fasciculations, so I am wondering how you know. Thank You. I wish you luck. I have been sick for 12 weeks and I just had an abnormal ct of lungs. Enlarged lymp nodes in lungs. Dont know why yet . I have to see a pulmonoligist soon.