Status
Not open for further replies.

bratpak

Member
Joined
Aug 4, 2006
Messages
12
Country
US
State
AK
City
Anchorage
Hi, I'm new here. I've been reading your posts for about a week now, searching for answers. I've had a deep aching weak feeling in my forearms and hands that has gotten slowly but progressively worse over the last six months. It almost feels like tendonitis sometimes. My tendons feel tight to me. I also have shooting pain from my calves into my feet occassionally. I'm tired all the time. My jaw, neck, shoulder and arm muscles frequently stiffen. My doctor has run every test in the book practically and everything comes back within normal limits. MS is not suspected (according to a Virginia Mason MS specialist). My creatine kinase was fine. My NCV's are normal. I have EMG's done on the 9th. I'm wondering if I'm barking up the wrong tree or if there's even a remote possibilty that this could be ALS. Did any of you who have been diagnosed experience pain as an initial symptom? Sorry about the rambling, but I can't stop thinking about this....thanks everyone.
 

MtPockets

Very helpful member
Joined
Jun 1, 2006
Messages
1,528
Reason
PALS
Diagnosis
05/2006
Country
US
State
Ms
City
Gulfport
Welcome to the forum Bratpak

I hope you can find the help you need here. Each and every case is different and just because you have a few of the symptoms does not mean you have the disease. The tests that helped me most were the EMG, nerve conduction study, swallow test, and finally as a last resort a muscle biopsy. As for your question about pain, yes I had severe muscle pain, others did not. As I said each case is unique. I wish you the best with your test results and come back anytime. I know there are many others who will help give you more information.
God Bless
AL:)
 

bratpak

Member
Joined
Aug 4, 2006
Messages
12
Country
US
State
AK
City
Anchorage
Thanks for your reply. I appreciate any input. You are all very supportive here. No worries, I'm not going to use up my energy worrying over anything unless and until the doctor gives me a reason to. For now, I'm biding my time waiting for the next test. I've learned to adapt to the strange symptoms I've had; I just wish I knew what was causing it.

Thanks again :)
 

MtPockets

Very helpful member
Joined
Jun 1, 2006
Messages
1,528
Reason
PALS
Diagnosis
05/2006
Country
US
State
Ms
City
Gulfport
Not knowing hurts

I know what you are going through. As with many of us on here it took couple of years for symptoms to develop to point I could get definite DX. But something in the back of my mind told me all along it was ALS, just hated to finally hear the Doctor verify it. I've had symptoms about 2 years and got DX May 15, 2006. Almost completely lost use of my legs and trouble swallowing is getting worse. But everyday above ground is a GOOD day.
May God Bless,
Big AL

:)
 

bratpak

Member
Joined
Aug 4, 2006
Messages
12
Country
US
State
AK
City
Anchorage
That's sort of how I feel...in the back of my mind I know it's a real possibility and that's what scares me. The pain and fatigue aren't the only symptoms I have; I have frequent (almost constant) stiffness in the muscles of my arms, shoulders, neck and jaw. And I get twitches all over my body. Most are simply annoying; others are strong enough to make the limb move slightly. My hands feel clumsy and shaky. I have EMG's on the 9th, so I guess I'll know more then. I noticed that several of you say you had 3 or 4 sets of EMG's before DX. Is that because they were normal at first? or was the doc just tracking the degeneration thru a series of EMG's? Just asking cause this is the second time I've had them, but the first time was only on one limb (my left leg - normal); this time they are doing all four limbs because my arms are my primary problem right now. thanks for all your help. It's nice to be able to talk about this with people who understand. My husband is in a sort of denial stage about what could be going on, even though it's been slowly progressing over the last year (first noticed burning sensation in one arm last Aug.) So thank you for giving me an outlet and precious information. I admire you for your strength thru such a terrible disease. you are inspiring. :)

thanks
Cyndi
 

marlo

Active member
Joined
Feb 20, 2006
Messages
92
bratpak said:
That's sort of how I feel...in the back of my mind I know it's a real possibility and that's what scares me. The pain and fatigue aren't the only symptoms I have; I have frequent (almost constant) stiffness in the muscles of my arms, shoulders, neck and jaw. And I get twitches all over my body. Most are simply annoying; others are strong enough to make the limb move slightly. My hands feel clumsy and shaky. I have EMG's on the 9th, so I guess I'll know more then. I noticed that several of you say you had 3 or 4 sets of EMG's before DX. Is that because they were normal at first? or was the doc just tracking the degeneration thru a series of EMG's? Just asking cause this is the second time I've had them, but the first time was only on one limb (my left leg - normal); this time they are doing all four limbs because my arms are my primary problem right now. thanks for all your help. It's nice to be able to talk about this with people who understand. My husband is in a sort of denial stage about what could be going on, even though it's been slowly progressing over the last year (first noticed burning sensation in one arm last Aug.) So thank you for giving me an outlet and precious information. I admire you for your strength thru such a terrible disease. you are inspiring. :)
thanks
Cyndi (quote)


Hi Cyndi,

Sorry you have a need to be here,, but hope we can be of help. I had 2 EMG tests mostly because the neuro. was not going to release me to go back to work due to the disease, so i would have to file for SS disability. He felt i most likely would have to have a second opinion in order to get it. Both of my tests showed abnormalities.
I wish you well ,, in your journey.

Love and Prayers
Marlo
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Cyndi. I was getting muscle cramps in my legs at night before the fasciculations started. The cramp would hurt but after it went away there was no muscle pain. We're all different. I'd try not to worry (not easy) but stress can make any symptoms worse. Welcome to our forum and hope you don't have to be here long. Meaning they'll come up with another diagnosis other than ALS. Good Luck. AL.
 

bratpak

Member
Joined
Aug 4, 2006
Messages
12
Country
US
State
AK
City
Anchorage
Well, I had EMG's today......ouch. The doctor doing the test said I have very brisk reflexes and he saw fasiculations on the EMG, but "not enough to worry about". He was going to make some recommendations to my primary doctor in his report about some lab work I should have done to check for other conditions. I haven't seen the report yet (I work for my primary doctor :) ), but I'm sure it'll come in tomorrow. Something I found interesting is that the EMG doctor said that ALS has to be pretty far progressed before the EMG can really be used to diagnose. He said I should have them repeated in 6 months to a year, depending on whether my symptoms progress, stay the same, or go away. I hate the waiting game. I just wish they could say for sure that it's not ALS, but I guess at this point it can't be entirely ruled out. Does anyone have any suggestions as to what other conditions can mimic ALS that we can work on ruling in or out? The MS specialist said her suspicion for MS is low; lyme was negative, lupus panel negative, B12 is normal, CPK is normal, no diabetes. Any other ideas? Thanks for your help.

Cyndi
 
Joined
Aug 15, 2006
Messages
18
Country
US
State
AL
City
Henagar
with my SUGAR MOMMA, there were times the pain was terrible, after the disease started taking more of a toll, but like the others say its different in every one.

I suggest getting 2nd and 3rd opinions on everything. then I would build from there.

Please keep us updated, k, friend?
 

Barbie4

Distinguished member
Joined
Mar 26, 2006
Messages
139
Country
CA
State
Ontario
City
Everett
Hello

My friend had a spinal tap and an MRI to rule out other causes,when she was being diagnosed, Have you had those tests yet? She didn't have pain, but her emgs came back positive, and she only had symptoms for about 4 months.

I hope it is not ALS and that you find out it is something small and curable. I truly do.
Stay as strong as you can. Good Luck.

Barbie:)
 

bratpak

Member
Joined
Aug 4, 2006
Messages
12
Country
US
State
AK
City
Anchorage
Thanks everyone for your input. Yes Barbie, I had spinal tap (a miserable experience as it took the radiologist 7 pokes to my spine to finally draw fluid which caused spinal leak and terrible spinal headache that took an ER visit to get rid of; I don't think he was a very experienced radiologist!) I've had 2 brain MRI's, plus C-spine and T-spine MRI's; all were normal. I saw an MS specialist at Virginia Mason who said her suspicion for MS is low. I'm waiting for the EMG doc to send his final report to my primary doc, who will probably send me back to Virginia Mason, this time to an ALS specialist.

You said your friend had positive EMG after only 4 months of symptoms; at the time of her EMG was it pretty obvious that something was really wrong? e.g. had she lost the use of a limb, or have trouble speaking, etc.? I ask because the EMG doc told me that by the time the EMG is able to diagnosed ALS, it is pretty obvious clinically. Just curious; I know that ALS strikes everyone differently. I just wish they would tell me No, you don't have it! Until then, I keep very busy and try not to let my twitching and pains affect me. I wish all the best to you and your friend. Thanks again for your reply. :)

Cyndi
 

Barbie4

Distinguished member
Joined
Mar 26, 2006
Messages
139
Country
CA
State
Ontario
City
Everett
Hi Cyndi

Hi Cyndi:

Yes, she was having trouble with her right leg. She was a runner and she noticed she couldn't keep up anymore and that her leg would drag a bit. she also noticed that it would take her longer to write.
She experienced the same awful headache after her spinal tap. It was so terrible, she was told to lie flat on her back for a few days right after she was given this awful diagnosis.

My best to you Cyndi. I will be thinking positive thoughts for you.

Barbie :)
 

MtPockets

Very helpful member
Joined
Jun 1, 2006
Messages
1,528
Reason
PALS
Diagnosis
05/2006
Country
US
State
Ms
City
Gulfport
Curious Muscle Biopsy? How Many had 1?

I'm hoping for the best for you Cyndi. I had all the spinal junk but was not far enough along at the time for anything to show up I guess. A year later after muscles really began to jump the EMG showed muscle activity everywhere they poked me, which seems like everywhere, haha. But the next test they did was a muscle biopsy of the major muscle in the right thigh. When it came back May 15, 2006 they said there was definite ALS due to obvious nerve damage and other indicators?
Have many other people had an ALS DX confirmed by muscle biopsy? Just curious since I do not hear others talking about this much.
I had bunch of other symptoms, but Neurologist said the Biopsy left no doubt. ALS
Anyway Cyndi I wish you the best,
God Bless,
Big AL
:)
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
I asked my neuro about biopsy and he said it's pretty invasive and there were enough other things going on that he was pretty sure about the diagnosed. I think most neuro's think that way and you had some other issues before you started with the ALS symptoms which might have clouded your picture Al.
 

MtPockets

Very helpful member
Joined
Jun 1, 2006
Messages
1,528
Reason
PALS
Diagnosis
05/2006
Country
US
State
Ms
City
Gulfport
You are right there AL

I had and have a lot of other issues, hahaha.... Just kidding. The biopsy was pretty invasive and took long time to heal, but it kind of shut the door on my thinking it was anything else. I did not know if others had gone thru this for final confirmation or not, or was I just special......weird, different, you know what I mean?
Anyway have a great weekend everyone and God Bless.
Big AL
:confused:
 
Status
Not open for further replies.
Top