Status
Not open for further replies.

Jingles

Member
Joined
Apr 14, 2006
Messages
11
Reason
PALS
Country
CA
State
BC
City
Ladysmith
Hi, I have just found this site and am very impressed with all the compassion and insightful thoughfulness so many of you show. It is comforting to know there are others that are so willing to impart their knowledge. I am 51 and am having so many similiar symptoms so many of you have mentioned. The muscle twitching for me started about a year ago in both my calves. I saw a neurologist at that time for that as well as severe vertigo, insomnia, not coping with stress at work, insomnia, and trouble with speech and word finding difficulties.I have not worked since that time. Was told these were menapausal symptoms. Not impressed. In Sept 05 started with speech slurring neck stiffness and base of skull tightness. Had 2 CT and MRI (brain) which was normal. At that time thought I may have MS. Symptoms seemed to subside, but started up again in Jan 06, difficulty talking, trouble swallowing, choking episodes , and left leg drag and severe cramping and spasms at night and upon waking. Twitching in both legs all day long. Saw the neurologist again a month ago. I have another MRI boooked on Tues. Skull base and C-spine. I am really distressed. Its the not nknowing for me that is the hard part. I also fell flat on my side getting out of our truck. Stepped out on the left leg and it just gave way, very scarry. What are anybodys thought. I know I have rambled on and on , sorry for that . I do realize from other posts that there is no clear diagnostic tool and many of you are in the same boat. Thanks for any info any of you can provide.
 

ladave

Distinguished member
Joined
Feb 12, 2006
Messages
136
Hi Jingles-

I note that you have not been scheduled for an EMG. That may mean that your docs do not suspect ALS. Or it may mean they don't know what to look for. I'd ask why an MRI but no EMG.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Sometimes not knowing is more stressful than knowing. Untill you get all the tests in I'd try not to worry. I know it is not easy but most of us here have been through what you are feeling now. Keep us posted. We care.
 

Jingles

Member
Joined
Apr 14, 2006
Messages
11
Reason
PALS
Country
CA
State
BC
City
Ladysmith
Thanks for your words of encourgement..it does help.
 

Jingles

Member
Joined
Apr 14, 2006
Messages
11
Reason
PALS
Country
CA
State
BC
City
Ladysmith
I am hoping after I have the MRI and see him in follow up we can discuss EMG. He had mentioned a Hemanginoma, so I guess he is ruling that out. But my symptoms sure seem consistent with some form of motor neuron problem. I will hope for the best.
 

Barbie4

Distinguished member
Joined
Mar 26, 2006
Messages
139
Country
CA
State
Ontario
City
Everett
thinking of you

Hi Jingles.

Just wanted you to know I was thinking of you and hope for the best for you. I am new to this site as well, not qualified to answer your questions, but am a good listener. I didn't think you were rambling.:)

Barb :)
 

DesertWoman

Member
Joined
Apr 6, 2006
Messages
13
Reason
PALS
Country
US
State
AZ
City
Tucson
Hi Jingles,

I am in a similar situation where I have a lot of the signs (both on EMGs and others like balance, spasticity, a few choking episodes [I'm not sure if it was my swallowing incorrectly or another ALS symptom], a weird feeling in my throat even if I don't swallow, and hyperreactive reflexes.

All of these symptoms started about 2-3 years ago when I noticed that I had a difficult time hand writing. Then, came the throat thing and I saw an ENT specialist who said there was nothing in my throat. I thought that it was allergies until tonight I was so aware of my swallowing and then I connected it to ALS and literally felt my body go limp from fear.

I am in a real state of worry and am concerned that I will die a horrible, cruel death from ALS.

I am in awe of the members of this forum and of Brain Talk's because they seem so positive and all I'm doing is blabbering fear with my keyboard.

I hope that you find answers soon. Me too.

Karen
 

Granny

Distinguished member
Joined
May 18, 2005
Messages
205
Hi Karen,
All of us who seem positive now were once at the stage that you and Jingles are at now. The unknown is so frightening. And the diagnosis of ALS is also scary. But, things do get easier to handle. The first few months are the hardest, I think. Stay as calm as you can, and maybe the diagnosis is not ALS!
I refuse to let myself think that I will die a cruel and horrible death. I am too busy living life to think about that. Lots of people with ALS just die in their sleep.
BTW I did not think you were blabbering, this is a place where everyone is encouraged to "let it all out". Welcome to the fourm and all the best to you and to Jingles.
Hugs and prayers, Leah
 

Jingles

Member
Joined
Apr 14, 2006
Messages
11
Reason
PALS
Country
CA
State
BC
City
Ladysmith
Hey, everyone. Thank you Barb for your kind toughts as well as Granny...it means a lot to know that you have been in our shoes and you have a sense of what Karen myself and otheres who are awaiting a diagnosis are fearing every day.

Karen, I to have the problems with swallowing. For me its a feeling of paralysis of the tongue base and throat. It is difficult to drink out of a straw, purse my lips and swallow food with out the sensation of possibly choking. I too did see an ENT 6 months ago and had an ultrasound of my thyroid, both proved negative and he could not find a reason for my symptoms and suggested neurologist referral. I have this feeling in my throught constantly even when swallowing saliva, but I can eat and am grateful for that as I know many others here cannot. I feel so guilty complaining when I know so many others are in worse shape. But I guess in the sheme of things we have to be positive of what we still can do and what our bodies will allow us. Good thoughts go out to all of you today.
 

marlo

Active member
Joined
Feb 20, 2006
Messages
92
Hello Jingles,

I can relate to the scary weird feeling when i swallow,, too. For awhile it was pretty bad. But for a couple of weeks now it's been better. But i know it will return, it always does. Thats whats frustrating for me. I will have a stretch of time where i feel pretty good, then without any warning it will come back worse than ever. At the same time i was going thru tests to diagnose ALS,, the doctors found i also had a thyroid problem. That has now been treated and i feel much better than i did. But during that same time frame, i was bleeding internally too. For over many months blood would come into my mouth all day long. Sounds gross i know,, sorry,, but that is what i was dealing with. I had all kinds of scopes, scans, mri's etc. ,, and yet they couldn't find where it came from. After,, about 10 months or so of that,, it finally quit. So i am kinda like you,, waiting and wondering what all of that meant. Will it come back and the doctors find i also have something else on top of the ALS, and thyroid,, Who Knows ... And the twitching, stiff neck , very bad speech trouble and the over extended reflexes are a part of most of my days too.

But it took the doctors so long to find out what was wrong with me,, that i decided ,, it didnt' matter what it was ,, any longer,, i just needed to know,, and then deal with it.

But like the other ones on this site have said," we have all been where you are". So feel free to vent, ask questions etc. thats what this site is for. And we will all do the best we can to answer your questions.

Love and Prayers
Marlo
 
Status
Not open for further replies.
Top