My journey so far. Ugh.

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My journey so far. Ugh.

Postby UTCougar on August 13th, 2014, 2:49 pm

Hey everyone. I've been a lurker since probably April. Still experiencing BFS symptoms and I guess a large part of me is still convinced I'm coming down with ***.

Here goes-

Mid December 2013- I began experiencing twitches in my calves. Took some magnesium and got scrip for gabapentin from doc. No change.

Late March 2014- I began feeling a weird sensation in my thumbs and forefingers. Freaked me out. Saw my doc again, had an EMG with an EMG tech and everything was normal.

April-May 2014- Twitching continues, sensations in hands continue, I come down with a crap ton of anxiety which makes it all worse. Saw an actual nuerologist, had exam and another EMG and was told everything looked ok.

June-July 2014- Anxiety has gone down with help of citalopram. Still having twitches, joints snapping and popping all the time. Imagining swallowing problems, speech issues, etc. Also could swear that I was having muscle atrophy in my right wrist.

August 2014 (Current)- A couple of weeks ago I began to feel a little tightness in my right hand. I only feel it when I close the hand like i'm picking up a pinch of salt or sand. Don't feel it when opening the hand, when the hand is at rest, or when making a fist. I also feel like my forearm is a little tight and my right bicep felt tingley.

Anyway last Thursday I saw my nuero again to talk about the hand stiffness. She ordered more labs and scheduled an EMG for September 5th. I manage the anxiety so-so but I'm afraid my symptoms are getting worse. I keep waiting for things to level off and it seems like they never do. I also during the last couple weeks have felt a lump in my throat. After reading these forums I hope this is "globus" (sp?) and it has seemed to be lessened the last couple of days.

I'm a 34 year old male, father of 4 boys ages 9 and under. My wife is sick of my anxiety and self checking my body all the time. I'm pretty freaked out but can work and function for the most part. Nuero said on Thursday that maybe a peripheral nueropathy or carpal tunnel. Thing is I'm afraid many people that come down with *** are misdiagnosed with carpel tunnel early on. Nuero certainly doesn't think ***. They are always looking for clinical weakness and I don't have that. I'm afraid I've got the slow onset kind. If anyone can offer any help that would be great.

Can hand stiffness be caused by anything else? Could my hand be just sorta swollen so it feel tight when I make a pinching form with the hand? Help

UTCougar (Spencer)
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Joined: April 17th, 2014, 1:26 pm

Re: My journey so far. Ugh.

Postby jerbear_13 on August 14th, 2014, 2:46 am

You could just have BCFS. I am 6 months into this with two EMG's. I was seen by a neuromuscular specialist up at the U of U ALS clinic who did my EMG at 4 months in and he said I have BCFS and there is no way it was ALS or going to turn into ALS but I get stiff muscles and cramps all the time. Do you have any long term or chronic stressors in your life? I bet things will start to look up if you think deep and get rid of your stressors.

I would say you are fine if you are this far in without weakness and have been given the all clear. BFS/BCFS can do some really crazy stuff to you. Almost all cases are idiopathic so everyone experiences things differently. I have had trouble swallowing and other things to suggest Bulbar but I have also had a swallow study done, FVC for breathing and an MRI of my brainstem and all is well. Stress can royally eff you. (Pardon my French) in fact, looking back on it, the first week of me dating someone, I totally forgot that I even had a swallowing problem. I also "developed" problems with biting my tongue and cheeks but when I finally calmed the hell down, I hardly ever do it now. When you focus on a problem too much it really does get worse. Trust in your doctors. After this EMG, I would suggest stopping. Go get a therapist and talk to them instead of seeking reassurance from doctors. It can be so draining! I was so into seeing every doctor I could. On days when I start to get that way, I remind myself that I was seen by an expert in neuromuscular disease with the most up to date and sensitive EMG equipment and that he has told me repeatedly that I will be okay and to expect a difficult but normal road ahead. Perhaps you should visit an ALS clinic?

Other things you might want to consider: I would recommend asking your doctor to test your Vitamin B-12, Vitamin D, Phosphorous, Iron and Magnesium levels. As well as a comprehensive metabolic panel test, it should check your Potassium along with other electrolytes. I will include a link with a study from a University here that is very in depth about vitamin deficiency that might help ease your mind.

Hopefully this helps.

All the best, Jeff.
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Joined: June 4th, 2014, 7:07 pm

Re: My journey so far. Ugh.



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