What it was when it was not ALS

[SwedenBiggie]

Hello

I just wanted to say that all my symptoms ended up with CMT - A sensitive nerve disease. Ive been on this forums alot, and i just wanted to say to everyone here that you guys are Amazing. Everything makes sence now.. I am one of these who have abnormal feeling in legs +constant popcorn legs + Fasciculations tounge +Athrophy in one of my hands. I started to have symptoms last year Juli. Ive been here and i have been posting anxiety letters, just about me thinking i have ALS. When i see this all clear now, i can see how stupid i was.. Because the symptoms wasnt even Close. Just wanted to thank you, for being there, and tried to explain this for me. The reason i came back here, to tell you this.. Is because i Think that many people comes here, and when they finds something else, they leave and never come back. I just wanted to explain what it all was in my case.

I know alot about this disease now.. Im thinking about you all... God bless you..

 

[MaxEidswick]

>I just wanted to say that all my symptoms ended up with CMT -

Great news! congrats

 

[Nikki J]

Thank you for returning to tell us. What was your username before if you don't mind telling us?
Thank you also for kind words. While obviously better than ALS Charcot- Marie- Tooth is no small diagnosis either. Good luck going forward
Best wishes

 

[SwedenBiggie]

Thank you guys. No its not a small diagnosis. Im going on pain medication for the neuropathy in my feets atm and prob will for the rest of my Life I cant also sit down, because the pressure on the nerves will make the legs numb. I also wear protection pads on arms and legs when i sleep. I was falling asleep 3 months ago, on one of my arms and i had no feeling in it for 2 months after that. My anxiety the past year has made the disease worse but i am accepting it now and will do the best out of it. My name was Christopher. I was kicked, because i was to hard on people who had symptoms, that pointed away from ALS. When i myself was that kind of a person. Im only human... I wasnt thinking correct.

The doctors never thought it was ALS. But after over a year with symptoms, they rules out alot, and they first thought it was something called Isaac syndrome(They was very sure), and they also thought about CIDP.I After a while they ran tests on my father and me, and they saw the CMT mutation. That explained alot because my father has always been having tremors, not so stable legs, and he cant walk so long because tiredness. It feels good to know what i am dealing with. Now i quitted school, and work.. I must study again, to something i maybe can work from home with, or something.. Everything is changing. The best we can do is to make the day the best we can. Tomorrow is Another day. Best wishes <3

 

[affected]

Christopher, coming back here and telling us is a huge kindness to us.

Your descriptions now too of what was going on in your head with anxiety and now receiving a diagnosis is so honest.

I sincerely wish you all the best in learning to deal with and live with CMT. I hope your anxiety can ease a little now as you have named your monster and can do something about it.

This could become part of a stickie I think. Great to have confirmation when one of our DIHALSers are able to show they did have a physical medical issue, but it was not ALS.

I know we only can effectively use so many stickies, but maybe one that combines posts like this (doesn't need our replies) to show how many other things can be at play and be found to be the cause.

 

[Nikki J]

I have added this diagnosis to the list of what it was. Unfortunately too many stickies are counterproductive.

Christopher I do remember you now. You have had a tough road but it sounds like you have a great attitude. Good luck with an alternate career
And thanks agIn for returnong!