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.
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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