Welcome to Newbie: Leg Symptoms

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J

JoshManyRemyManyGame

New member
Hi all,

I am new at this and not a computer guru, old school. Anyway let me share my story. Last June I started to lose control of my leg, it would become stiff, like a board. over the next few months and many test my symptoms have gotten worse, Today I have stiffness and severe cramps in legs, arms and lower rib cage, It is very hard to focus and sleep is all out of wack. Twitching occurs daily and I'm sure all feel my pain. And as all of you know this is the very short abstract.

In December I was informed by Johns Hopkins that I have BCFS. I'm currently taking Lyrica and like gaplelin @sp, and Baclofen, after about two weeks the cramping and twisting of my hands and legs start to resume.

My question is this. Is anyone out there experiencing the same thing? How long will this syndrome last, how do I function in my life/job? I would just like to talk with someone who has experience in this.

My deepest respect to everyone.
 
Hey Kman,
Ditto on the old school stuff. The computer age is steadily leaving me behind.
Sorry to here about your issues. You will be fine though. You are defiantly BCFS material. I too have all your symptoms +. Mine started last spring. I googled and did the freak out thing. Physically I got worse since then but better mentally. I still have my ups and downs. The stiffness and cramping bugs me. I am also worried about my job and if I can keep up. Trust your Docs and go easy on the Meds. I have flushed many a pill down the toilet. Keep in mind though not all respond the same to treatments. What doesn't work for some may work for others. Quinine helps alot of people with the cramps. So does magnesium and calcium. Usually stuff takes a while to get in your system before you know if it works or not. I do know that sleep plays a huge roll. Lexapro helped me chill and sleep better but I had to much brain fog so I weaned myself off. There are natural sleep aides that work well. Lots of trial and error Bro. I will help anyway I can, however there are some awesome people here with more exp. I call them " heavy hitters". Trust what they say also. Good luck & stay strong. DD
 
kman
Wow, how did you get into Hopkins, very hard to get in. What Dr. did you see. They have a good Muscular Clinic.

Did they do an EMG, or just a clinical exam?

If you read through some old archive posts, it sounds like BFS. Some of the senior people on this board are very informative and supportive. You have found a good place to come.

Where do you live in Delaware?

Terri
 
The cramping stinks....I have learned to basically ignore the twitching...weird, annoying but does not interfere with my life...the cramps, however, are another matter...haven't found a remedy that works..other than the hot tub..that does work, but obviously I can't spend all day in there...I have noticed that my cramps seem to wax an wane in terms of frequency...so, when they get bad I just remind myself that tomorrow is another day and possibly a day without cramps....I am sorry for your troubles..I hope it helps to know that you are not alone...
 
kman,

If you read all of the posts here, if you take away the anxiety factor, everyone here is functioning in their life/job just fine.

This syndrom may last forever, but you have a diagnosis from a very credible source that you have nothing nasty.

Will this syndrom be a pain in the butt sometimes? Yes. But it won't debilitate you or keep you from living your life. And anxiety will only make your symptoms worse.
 
First terri,

I used much persistance and my first neuro, was fantastic she kept me at easy and when she wanted a second I informed her that I knew people in Baltimore and it was easier to go there. She refered me to Dr. Chaudry, at that time ALS was concern because of dirty emg. Second one she performed was normal. I went to Johns and in one single day I was going to leave Knowing if I had ALS. Stressful day!!! I spent the day there and had third emg, Dr. Chaudry informed me that ALS negative and perscribed Baclofen, He also set me up with movement disorder group. I have third appointment on 24th. Another thing I did was not to take medication until I found a Dr. who could tell me what was going on, I rather live with pain and walk with the legs of Frankenstien so that they could fully see all my symptoms.

I have another question has anyone had their arms twist into a curled position?

I would also like to take this oppertunity to pass on a book that a cancer survior gave to me. Kitchen Table Wisdom by Dr. Namoi Remen, great reading for down times!!!

I am so greatful I found all of you!!!

Look forward to talking agin soon.
Eric
 
Kman,
I am glad your second EMG was negative. Dr. Vinay Chaudry is very well respected. I would trust anything he says. Did you like him?

Did he suggest any further follow up with him. You should be happy about your referral there, and take comfort in the Diagnosis. I hope symptoms get better for you. From reading all the posts here. This BFCS has a host of weird symptoms.

I hope things will improve in the future. Everyone here is very supportive. Good Luck

Terri
 

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