Hello, I'm Sagemark

Sagemark · 01-09-2009, 02:14 PM

I have read through some of the forums and can't keep the tears out of my eyes. I have been diagnosed w/ Fibromyalgia for 10 years but things have started to take a turn. I am working w/ a few neurologist and MND is suspected. They said it is the last thing on their list which it always is. Electrolytes are fine and potassium levels are almost out of range on the high side.

I started having muscle twitches in August. I complained to my PCP about that, muscle weakness in my legs and shoulders and the fact I could barely hold my head on my shoulders. He sent me to a neuro and the EMG and NCT showed I had Double Crush Syndrom. They treated it with Cervical epidural injections that stopped the pain but not the twitches.

The twitches turned into cramps that would lock up my arm for a few secs then release. annoying but not too painful. Then the big one. My right calf cramped and would not release. It stayed cramped for over a month and still is painful to walk today. Now I am getting cramps in my left shin that is not as bad or as long.

I had a MRI on 12/23/08 revealing a 1cm herniated disc at L5 that is scheduled to be removed on 01/26/09. I asked the Neuro Surgeon if it would stop the cramps and twitches. He just said "No." The funny thing is when I walked into the med room I stumbled and my wife, nurse and I laughed and said I tripped over nothing. Later that afternoon in the grocery store It happened four times in succession. I thought I was going to fall or people might think I'm drunk. Hasn't happened since but I do get pretty off balance and stager but it could be the meds. Who knows?

The muscle weakness and fatigue are my big inhibators. I can deal w/ the twitching. I had one neuro ask if I wanted him to to test for ALS and I told him "No, I well find out soon enough."

Sorry for the long intro but I kinda thought this would be the place to air it.

Thank you all for being here and talking me through this with me as I am here for you.

Sagemark

ps I am over weight and plan to resovle that this year so they can't say "Oh. It's just your weight!"

CindyM · 01-09-2009, 02:17 PM

Welcome to the forum Sagemark. I hope it does not tourn out ot be ALS. You might go through with the testing, just in case you need treatment for something. ALS has a few mimics out there and some of them improve rapidly if diagnosed and treated. Regards, Cindy

BethU · 01-09-2009, 02:48 PM

Hi, Sagemark ... and welcome. I hope it does not turn out to be ALS. While you are going through the tests, I would advise you to NOT try to diet strenuously ... At least, talk to your neuro about nutrition before you change your diet too radically.
Good luck. Hoping for a good outcome!

Zaphoon · 01-09-2009, 02:52 PM

Beth has a good point about the aggresive dieting thing. If at some point in time you should be diagnosed with ALS, it could do the weight reducing for you.

sukilou · 01-12-2009, 03:03 PM

Hi Sagemark and welcome! I also want to share my dieting experience. I was dxed with fibro 16 yrs ago. I first was sent to a neurologist 1 1/2 yrs ago because of balance and gait problem (many falls). My neuro concluded then that my problems were musculoskeletal and recommended that I lose weight to make it easier for me to maintain my balance and to get around. So I did diet and lost 40 lbs. Now fast forward to present--my ALS neuro told me not to diet but to focus on proper nutrition as my extra weight represented energy that I would require on my ALS journey.