Please read my post....scared......

[scot123]

hi

hopefully i can try and summarise my current state and would love some straight answers as your opinions are valued greatly. back in 2010 i started having some strange symptoms stiffness in spine,legs and hands with cramps in all parts followed with some spasms and minor twitches. became really fatigued and symptoms continued with my right forearm,tricep,delt,shoulder and part of right side of neck wasting.
went to my doctor who referred me to a neuro who then ordered a emg. during the test the doctor who also did my leg said there was something going on in my arm but said i wasnt giving him any "SIGNS" and that it was probably just a bit of nerve damage and to learn to live with it. i was shocked but accepted their opinion[being 28 at the time and was living life] so i tried to carry on working as normal and also working out as i loved training and things slowly progressed...more fatigue...loss of strength...loss of muscle mass....so you push harder to try and keep going as the doctors told you to learn to live with it until recently. THIS IS THE PART I WOULD LOVE A ANSWER FROM YOU GUYS FROM...my symptoms seen to have finally gone over the edge and now its like a faulty gene or something is going mad inside my body working its way round my body just burning cramping the area with some tingling and its wasted spots of my thigh[both] round my lower leg,calf and ankle area[both] and worked its way up to my throat,neck,shoulder area cramping burning tingling them areas and wasting there aswell. its affected my voice with my tongue also cramping and twitching. ITS GOING CRAZY. i am a keen gym goer and i'm currently flooding my body with creatine and whey protein and washing it down with gallons of water to try and volumise the muscle affected. have seen my local doctor and he's sending me to a neuro so i'll see what happens in the future. BUT MY QUESTION IS........does that sound right told to learn to live with nerve damage then slow progression then all of a sudden it goes over the edge so quickly resulting in my whole body going hay wire? anyone else have like this pinball effect where it goes mad cramping,burning,tingling followed by quite visible big twiches? PLEASE RESPOND?

 

[Alyoop]

Does it seem right. Yes , from where you were at the time of your EMG. However. Its up to you to then go back and seek help should your symptoms progress. A doctor can just assess you. during your time with him?her. If you showed no worrying signs or symptoms during the exanimation then. Thats all they have for an assessment.

You have done the correct thing, by going to see your doctor and getting a new refferal, now that your symptoms have progressed.....welldone.

Now its important to let your doctors reassess you. PLEASE do not dwell on an obscure and rare illness like ALS. There are literrally hundreds of things that could be causing your symptoms.

I wish you luck.

 

[brooksea]

Burning and tingling are not symptoms of ALS.

ALS is an insidious disease and just doesn't go "haywire" all of a sudden.

Wait for your doc to assess your situation.

 

[scot123]

thanks for your replies

i didnt know what to expect from posting and are glad some of you took time to post a reply. many thanks.

so sorry for those of you who have lost a loved one to this terrible disease or are directly effected themselves.

i can only explain my symptoms so far with words on a keyboard and wont post again.

again many thanks.

 

[glupavomomiche]

I agree, the only way you'll get any answers or peace of mind is to see your do ct or.

That being said, you are your own best advocate. Imagine if I had given up after I saw the first neuro... after three visits he was fed up with me and told me to see someone else if I wanted to, but "things just happen when you get old." I was 31 at the time, and it took another 10 months and four more neuros to get this dreaded answer.

In the meantime... try not to freak out! I know it's hard (trust me, we ALL know) but really, stay off the in ter web and don't seek answers on li ne... see a real do ct or. And just... do what you have to do... and good luck.

 

[tammyg]

Hey Scot, I am just wondering if you had a spinal tap. My dad had bulbar palsy/ALS. This kind of ALS working totally backwards from the norm. It started with him slurring his words and moved down in time. He could no longer talk, eat, had a feeding tube then it went to arms ect... My dad drove til the day he passed. I have never heard of it Pinballing all over the place but as we have seen this disease can do what ever it wants, to anyone. ANd anything is possible. I wish there was a bloodtest they could just give to see if it is ALS but there is not, more like a process of ruling other things out.
You should read up on the marijuana site here, I am not saying you should use drugs but from what I read it protects the nerves that are not affected jet and puts the nerves that are damaged on hold so no further damage can be done. Please don't stop posting, some of the people here are the best and some are more educated on thing then some Doctors. You have advice and friends here and will become part of the family but you need to bring your own beer. Good luck and don't give up, have you researches MS?Keep us posted.