New, Cold water sensations, leg pain, and scared

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Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

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Re: New, Cold water sensations, leg pain, and scared

Postby Anxious guy on November 1st, 2013, 3:39 pm

I eat pasta or bread almost everyday and a lot of it ..... Geeeez .....
Gotta make changes ! I have been getting 8hours sleep though since this hit me and I think it helps !
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Location: Northern Ireland / U.K

Re: New, Cold water sensations, leg pain, and scared

Postby Mm3952 on July 13th, 2014, 9:34 am

HI all,
I thought I would give you an update. As some of you know my uncle passed from ALS, so this has been quite a challenge in my life.

So, my leg pain turned into back and leg pain to extent that I had difficulty raising my knee. I have hot spots all over, with pulse-like spots in my ankle, popcorn like bursts in the knees and elbows, and twitches everywhere else including tongue, back, abdomen, thighs, calves, feet, area between thumb and forefinger wrists, butt, scalp, name it it was and is moving. Also included in this amalgam of fun were/are muscles shaking when used, pain in my throat, and my chest

Went back for my third neuro vist is 18 months. He did all checking...incredibly considerate and thorough....He did an EMG/NCS....I told him to stick the needle in my hot spots all over. He did.

Bottom line.....the EMG was totally clean even in the hot spots that were twitching at the time of the test. I have hyperreflexia, but no signs of clinical weakness...

He said NO ALS and NO MS....he is rechecking bloods for other things now. He is also going to do a nerve biopsy for small neuropathy.

I take some form of over the counter pain relief for my leg and back and that seems to help.

I am finally moving out of this fear that has held my joy hostage for over a year. I am a Christian and this has strengthened my faith and that of my family; I attribute much of this good news to God. Having said that, I know the fear well and the tears and wanted to express a solidarity for anyone going through that.

My third doctor validated:
Sensory feelings lead away from ALS diagnosis. This includes pain.
As long as reflexes are consistent on both sides, this also excludes diagnosis.
Weakness and clinical weakness are different.
I/ we are not crazy.
At this point, ALS would almost definitely show up if it happened to be the reason for the pain.
He wouldn't give me a BFS diagnosis until all stones had been uncovered but at this point, I am satisfied that MS and ALS are out....

Thanks for letting my lurch and for giving me great advice over this time.

PS. I pray for you all well as those suffering from any disease.
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Re: New, Cold water sensations, leg pain, and scared




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