please read my post and see if anyone can help

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Dave1

New member
Joined
Apr 5, 2016
Messages
6
Reason
Learn about ALS
Country
Us
State
Tennessee
City
Church Hill
Hi all. I’m new to the group and I have a lot of things going on and I’ve read all I know to read on here to try to help me figure out if this may be ALS.

I do know all people are differ in this and all disease even in getting a diagnosis but I really would appreciate any help I could get.

I’ve got lots of symptoms. Please don’t stop when I say this started 20 years ago. I can’t spell well, as I can’t think straight for hurting. But let me start from the beginning and it’s a lot more than I will remember, all the things that went on back from time this started.

I was a very active person a lady but work inside and out whatever I had to do.

I was at the time doing outdoor life size Christmas decor I done from wood up to the painting inside garage with kerosene heat.

I’ve been to doctor from the very start as I could stand.

The symptoms I was having came on all of a sudden with a pencil size burn in top of head put was like a deep burning for about a month.

Then I all of a sudden start have some I will call spells. Episodes come over me while in bed and I knew right before that one was coming.

My inside of the whole chest area would vibrate and the things that I can’t describe and with this came very severe skin burning all over body muscle twitching like the one in eye but lot bigger and pin and needles.

The most I can rem about the muscle was very tight muscles in the upper back and neck so bad it didn’t never go away for I’m talking months.

I layed on really hot wet towels out of microwave all the time.

I started having this I’m say loads of clear slimy secretions and esp. after I eat that I had to wipe out of my mouth with napkins and it would just keep coming for a few day then slow down and I still have it to this day but seems not as bad but its seems it comes for 2 days before I go into a bad spell that I have with my muscles tighten and having like Charlie Horse and won't release for hours.

Soma is only thing that help.

I have these spasms all over my body so bad esp. in my legs in back of knee increase but then all over body until I can’t even walk or move for being so sore from the spells that come on me. Even the entire scalp does this. It gets so sore that I can’t lay my head down on the pillow.

But I’ve went thought so much that I’d never be able to explain it all on here.

Most think is that up to this date I’ve went through a lot of stuff that seem to me that on muscle and or nerve pain spasms are really a killer for me and has been for last 5 years been worse.

I’ve had every blood work and test known to man but it’s been 3 years and the EMG was only done the last time in my lower legs and a nerve biopsy, MRI, just about any test known to man.

Lots of EMGs and test was done with the first started through the next 5 then another work up 3 yrs ago which I don’t think this neurologist didn’t know much which he said everything was fine.

I get really bad trying to use my arms to do much as if I do the muscle in my shoulders neck and arms tighten up so bad and cause more pain.

I don’t have a clue if you all will be able to help me.

I’m about out of money over the yrs trying to find out and I really try to do the best I can to keep going even with the pain with the muscles that I’m in it seems me.

My husband can tell when a real bad spell is coming I have a one day off all days that I don’t hurt none I’m a normal person and then I start looking really tied in my face and I know it’s a bad one coming and it does every time

Also I notice at this time my mouth is extremely dry for a day or so and then lots of time s its where I produce a lot of secretions or slimy clear in my mouth and then I start having these severe muscle spasms and cramping so bad all over as I said.

Please know that throughout these yrs. I’ve never had a good day except for the one I tell you about before this spell comes.

PLEASE excuse me calling it a spell as I don’t really know what to call it and that’s what I’m so afraid of when I’ve told the doctors about this stuff.

I’ve not used the correct words as I called the slimy stuff I produced excess saliva which was not ever the right word but I did say it was clear slimy.

I really know I’m rattling and not got it all written down but I really would like some people her to try to help me.

I know none of you are doctors but I QUIT going to neurologist and etc for years as I got so tired of it so I just took my meds for the symptoms to try to help me some .

3 years ago I had about 12 vials of blood work, EMG, nerve biopsy and he never said it was anything wrong. Just rem the last one was only on lower legs in few place.

Like I said I know you all have read up and seen people post on here and if they have said anyone has went this long as I need to say.

As of right now I have no parts that are weak or can’t use.

I’m just in a big mess. Have an awful life but thought I’d get on here and see if I could get any help, or to see if anyone ever heard of anything like this. Or a place on the net that I might could post this maybe in a better wording lol as this is just popping out of my head and it’s no way near all the things I’ve gone though.

I guess I’m really needing some kind of input to if this could be ALS after this long.

I know lots would say no but I believe whatever started this it’s still in same pattern just differ nerve muscle stuff all the time.

I don’t know where to even post this but please try to take time to read this and think back and try to help me.

I’m tired of doctors.

As I said I just do all my meds and try to live, but it’s very hard.
I’m so limited as if I do anything my muscle start acting up really bad and I’m start having lots of muscle twitching in my body and pin and needles in lower legs more again.

I wish I could just get some input as doctors now only want to run test and test.

DO you all think an EMG tells anything until weakness is present?

I WILL QUIT FOR NOW AS I’m NEW AND HAD ANOTHER ACCOUNT AND READ AND READ AND WOULD POST THEN FORGOT THE USER NAME AND PASSWORD I HAD SO I’m BACK to post and believe me I always give to try to find a cure for this terrible disease ALS.

I pray that they will find something but I guess I’m begging for anyone that will try to read this in a time that you can.

Let me know your thoughts and what you think.

Thanks so much in advance.
 
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Holy crap! Could you break that into paragraphs so it can be read? It's a huge mass of words ...
 
That's super tough to try to read. Please break it down and tell us;

a) what the doctors said at your most recent appointment with regards to your current symptoms

b) what you are asking people on this forum for- is it information on something specific?
 
I'm so sorry I really didn't know how to do it and I guess I was just doing it as I could think so please just tell me how I can do it to make you understandthks it better do sysptoms and Dr's aND test and etc I'm so sorry I will redo it as I would live some input of what you all think esp if anyone could go this long with all the terrible sysptoms I'm having started 20 yrs ago and it still here but getting worse but no atrophy I know it's hard to be patient as I can only imagine just let me know how to go it
 
Please, break your story into paragraphs. Use capital letters and punctuation. You dont need to start 20 yrs ago and give minute detail. Give us the main points and we will have a dialogue.
 
I would contact the doctors who ran all your tests 5 yrs ago and get a copy of every report you can with an explanation.. Then, if no diagnosis, I would have the suggested testing with a full explanation of what they are looking for, what they are ruling out, etc.
 
Jane, why are you tired of doctors?
 
Tennessee,

I think anyone with a history of painting and kerosene exposure in an enclosed space could have nerve damage secondary to chemical exposure. As you say, the treatment for something like that is palliative, not curative, and it sounds like you have been tested pretty well for treatable causes. But in terms of ALS, no, it doesn't take 20y to progress nor present as you have described. There is a pain management service at most university medical centers such as Vanderbilt, and that is one direction you might go. I am sorry for your suffering.

Best,
Laurie
 
Thanks for ones that responded I'm so sorry for the long post and the way it was written.
Am I doing better.
I am very much trying to figure out what to do I live in constant pain with muscle cramping making me so soreally
And spasms
PLEASE ANYONE ON HERE tell me after all these yrs would something not been working by now
Could I be some that takes longer to get a diagnosis
I know u all are not Dr's and I know every case is differ but I know this muscle spasms I've had for lot longer than the cramping so sever in my legs
I just need some advice if you know anything
I don't want to bother u all at all but I'm so thinking since
The rhemology Dr's said it's nothing in his field now
And said go back to neurologist
I just don't know what to do
I would just appreciate so much if you all ever heard of anyone going this long with the above sysptoms and could it be als
I just quit going to Dr's for so long as I have read and it's like it has to be in certain stage before they can tell u
But I'd like to know if it could be possible after on set of
Burning skin very bad all over muscle twitching all over body
And a lot of other stuff all during th ese yrs and
Don't have no answers yet
Do u think I should have another work up with neurologist
I know I sold all messed up but my muscle pain over rules my thinking PLEASE LET ME KNOW WHAT u all think thanks jane
 
Mike .the reason I'm tried of dr as when all this started I had all kinds of test blood work know to man
They were neurologist and then after all the emgs and etc
I finally just done my meds and had no live as I hurt so bad on my muscle not the severe cramping esp on my legs
I have had the whole in tire scalp to get so sore I'd have to hang my head off pillow for 2 days at a time
But Mike my last work up was three yrs ago and he done a nerve biopsy on both legs and a few needles on both legs said all was normal
So where and what do I do
But my main concern could this still be als
After this much time I know the Dr's was looking at that in the beginning as I saw als dr as I had a friend that told me to go to him as she knew him
Long post again
But when u are in these positions your are just looking for help thks so much
 
Dave I'm so sorry for what you are going through.

You had quite a lot of responses, and I'm afraid that we have never known ALS to be even remotely like what you have described, especially for 20 years. I know this doesn't give you any answer to pursue.
 
Jane, I know two things really well. First, you don't have ALS. Second, you need to see a Pain Management Specialist.

I wish we could help, but we are committed to people with ALS, and you don't have it. I am surprised you're not already in the care of a Pain Management Specialist.
 
they have wanted me to go to pain mangement but ive been on every meds from every pain meds to every muscle relaxer ther is only thing that help any is take a soma and pain meds as i feel these bad ones coming and they help some but soma is getting to be out of question since its a narcotic i just cant belive theres a thing like this that so much ive been though that they cant find a answer to what it is .
ive read where it takes some people yrs to find out about als and all they had was cramping and spasms for one it was almost 10 yrs before weekness set in .
i had a friend that it took yrs to dignois also but dont know exactly how long .
but i know some of you have been on here a long time and have read alot . and i know you all would know lots more than me
this is a misable life as i hurt in muscle all the time from spasms and then thoes scramps that like they come on all sudden and i can tell when they are coming on as i get so weak looking its sorta like i have a good day and i know oa bad one is coming by so fatigue and extra secretions clear slimy stuff in mouth . my body ends up hurting all over
ive had many times my whole scalps gets so tight for up to 2 days that i cant stand it
i have to put my head off pillow to sleep
i dont want to bother you all at all
as ive always supported als foundation only with money
i pray they find a cure soon
please anyone that comes on just read this who know . since dr dont know maybe someone some where has expericened some like this
so you all are saying it would be very rare for it to be als . thks jane
 
Jane, you said: "it takes some people yrs to find out about als..."

Yes. And it takes some people years to get their pain management straightened out.

Jane, I work a lot with veterans. I used to work at the VA. Believe me, some people take years to find out how to get rid of the pain, and some never do.

You're wasting your time (and ours) by chasing ALS. You would have much better results if you went somewhere else and focused on pain management.
 
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