Status
Not open for further replies.

baxter

New member
Joined
Apr 26, 2007
Messages
1
Reason
PALS
Country
CA
State
Ontario
City
Toronto
Hi all,

I've been lurking on the site for about a month now. I'm worried about the syptoms I've been experiencing and frustrated with the neuroligists I've met with so far. I hope some of you may be able to provide with some insight.

I've had widespread fasciculations for about a month. I wasn't too concernced until I started feeling numbness and cramping in my right hand (mostly the middle finger) a couple of weeks ago. I have burning sensation in my thighs + arms, which are there for most of the day, and get pins + needles in my hands + feet at least 3/4 times a day. I also have pain in my hands, feet, arms, back and neck and get occassionally get what feels like an electric shock in my limbs. I've yet to experience any noticeable muscle weakness, but am having difficulty walking around because of cramps in my calf and painful tendons.

I'm having a hard time being at work and ignoring the pain. The two neurologists that I've seen dismissed my fasciculations and pain as benign because I'm 29 years old. I'm starting to feel like nobody cares and was hoping that some you may be able to shed some light on what I'm going through.

Did any of you experience the pain, burning, tingling sensations that I'm feeling as an early symptom of ALS (or other disorder that didn't end up being ALS - I realize everyone's experiences/early symptoms are/were different)?

Is there someone I can see/somewhere I can go that will give me a better understanding of what may be wrong? The last neurologist I met with said "it may be ALS, but we won't know until you present with muscle weakness."

I'm scared because every day my symptoms seems get to worse. The fasciculations alternate between my calves, hand (right only), right thigh, back, bicepts, and neck. They were easy enough to ignore, but seem be getting more violent. My left calf feels cramped all day long and I have pain in my legs and hands. Any help/adivce is sincerely appreciated.
 

stevef

Active member
Joined
Mar 30, 2007
Messages
76
Reason
Learn about ALS
Country
US
State
massachusetts
City
weymouth
You need to go to als clinic if you can get to one. I know how you feel i have had some of the same symptoms and the clinic said right know it looks clean and no sings of als but i am still worried and scared as you are. Keep the faith and pray for the best but my advice is to go to a clinic if they can and have them run test even know there are no confirmed test for als but it might rule out of figure out some other disease. Best of luck and God be with You

Steve
 

zac111

Distinguished member
Joined
Jan 14, 2007
Messages
175
Reason
PALS
Country
US
State
al
City
mobile
hi baxter sorry you have to be here first odd the needles and pins are not usually a sign of als but mabey a neruophaty of sign kind lets just hope and pray it is. there are all kinds of things that cause muscl twithes so tryu and calm down the best thing you can do is find the closest als clinc to you and call them ive been to 2 different neruos and they told me the same thing so it just might be i had pain with mine to begin with but it went away so call them and may god bless and let us know how things go these are great people on this site.
 

Jamiet

Senior member
Joined
Nov 27, 2006
Messages
616
Reason
Learn about ALS
Country
US
State
Louisiana
City
Carencro
Baxter,

I don't think i can tell you any more than Steve and Zac did, you need to get to an MDA / ALS clinic, they are the experts.

ALS generally doesn't present with numbness / tingling, but anything is possible and it's happened before. Also, i'm 32 and i'm pretty sure Steve and Zac are in our age range. There are no real age limits to most neuro problems and there are exceptions to every rule, which is why this is so frustrating and scary.

Ask any questions you want, we are here for you.


Rgds,

Jamie
 

ltr

Senior member
Joined
Feb 11, 2007
Messages
690
Country
US
State
NY
City
Elmira
To add to what the other members have already told you, I was wondering if you had an MRI of your brain or back. I know you said you have been reading the forum, so you already know that these symptoms can be a lot of different illnesses.....and, like Jamie once said, about 50% of us don't have ANY diagnosis! Without alarming you, your symptoms sound more like MS than als, but still, it could be anything. I am really sorry that you are experiencing these problems and hope you get answers soon. Push your doc's for more tests and some help. Good Luck. Leslie
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hi Baxter. Interesting screen name. I used to spend my summers near Baxter State Park in Maine so the name raises fond memories. Regarding your symptoms, these things are really hard to DX. It usually involves a period of waiting and testing and them more waiting while they rule out everything else. At some point you start to realize that it might actually be a good thing if they rule in something other than ALS.

Your best bet it to inform yourself enough to feel confident when talkign with the doctors but not enough to get overwhelmed, and then try to focus on your friends and family, as hard as that might be. Good luck and let us know how things work out for you. Cindy
 

JACKIEMAX

Distinguished member
Joined
Jan 22, 2007
Messages
159
Country
US
State
TN
City
Baxter
hi baxter

the name 'baxter' brings fond memories to me also. i live in a small town in middle tennesse by the name of baxter. we have a wonderful als clinic 90 miles away in nashville, tn. - it is the vanderbilt als clinic.

you won't get too much information or cooperation from regular neurologists for answers i'm afraid. we went through three neuros, an ent, respiratory specialist, primary care md, before we could get a diagnosed. that diagnosed ws from the als clinic.

good luck in finding one. i didn't see the state you live in, but hope there is a clinic close by.

jackiemax
 

APC

Member
Joined
Apr 29, 2007
Messages
29
Reason
Loved one DX
Diagnosis
1/2008
Country
US
State
Ohio
City
Lima
scared too

Hi Baxter, My husband has had fascicultions since about sept. Drs in Cleveland said possibly benign. Did 2 EMG's neg. He only has them through his shoulders, elbow to elbow. 24/7. No pain. Some problems with speech at times. Coughs while eating. Legs and arms still strong. He finally got the MRI of the brain this past week. This was by my insistence to my family dr. Cleveland wanted us to wait 3 more months. The MRI diagnosed by family dr. as early ALS. So we now have an appt at OSU MD/ALS clinic. We also have a lot of praying goin on. I hipe my husband will use this forum too. It helps to know others that are facing the same stuff. Thanks for listening Alice
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hi Alice. I sent you a private message but am glad to come to this thread and see you figured out our little system! You are very right that there are anxious times but you are not alone. So I am glad you found us, but sorry for the reason you have to be here. If you use the search feature at the top of this screen you will see many discussions around muscle twitches, weakness, and testing for heavy metals. Let's hope the docs come up with a conditionother than ALS. regards, Cindy
 

pfowler44

Member
Joined
Apr 2, 2007
Messages
19
Reason
PALS
Country
US
State
Indiana
City
Elkhart
Hi Baxter
Most neurologists have little experience with ALS. Does this run in your family. Go to an ALS clinic. We went to Ann Arbor, MI. They were very good. You don't have wait for muscle wasting to get a diagnosis. EMG will usually and a good ALS neurologist will usually tell the story. They do like to do MRIs also. Talk to your primary Dr and get him to refer you to a clinic nearest you. We live 3 hours from Ann Arbor and they just happen to be in our insurance network. It is better to know than to not know what is going on. God Bless you and your family. Good luck and if you ever just need to talk e-mail me a private message. We have just gone through all the testing last week.
Sincerely Pat
 

zac111

Distinguished member
Joined
Jan 14, 2007
Messages
175
Reason
PALS
Country
US
State
al
City
mobile
hey baxter if your neruo wont refer you call the nearest als clinic i did and they have gotton me in within 2 weeks,and i wish you the best of luck.
 

Jamiet

Senior member
Joined
Nov 27, 2006
Messages
616
Reason
Learn about ALS
Country
US
State
Louisiana
City
Carencro
Rough Time Baxter, We know and have been thru exactly what you are going thru.

Please feel free to ask any questions you want, that's what were here for.

Look up your local ALS Clinic on the MDA Website or the ALSA.org website, and call your local chapter. When you speak to the clinic, tell them your symptoms and you'll get in quickly, there aren't these 3 - 6 month waits at ALS Clinics.

The twitching can cause many things, and the numbness is very unusual for ALS. Have your poblems gotten progressivly worse, or come and go?

Any double vision? Weakness / cramping at the end of the day? This could be Mystenthia Gravis. Also, what about Guillan Barre - have you been tested for that?

Get away from the local neruos, they are of no help and usually suck...to say the least.

Keep in touch here, we can help you all you need. Ask any questions you want.

Rgds,

Jamie
 

vmd

Senior member
Joined
Apr 27, 2007
Messages
581
Reason
Other
Country
US
State
idaho
City
N/A
I live in a small town and the nearest ALS clinic is hundreds of miles away. I will wait to see what the local neuro says first and if the diagnosis is ALS or suspected ALS, then I will make the trip. I have read that there is a 10% rate of false positives, but a 44% rate of false negatives. The false negatives are much too high and is a source of great concern to me. What are the local neuros good for, then?
 

ltr

Senior member
Joined
Feb 11, 2007
Messages
690
Country
US
State
NY
City
Elmira
I'll tell you what the local neuro's are good for

1. Blaming it on anxiety

2. Insulting your intelligence

3. Blaming it on anxiety

That's all I can think of right now.
 

liz

Senior member
Joined
Nov 9, 2006
Messages
642
Reason
PALS
Diagnosis
11/2006
Country
US
State
NY
City
Albany
vmd -

I think Leslie's list is incomplete. The local neuros are good at sticking you with needles and applying electrical shocks all over your body. They also say "hmmmm" a lot.

Seriously though, a lot of the stress people experience during the diagnostic phase comes from neurologists who aren't certain what they are seeing. They are fine for the routine stuff (for example, carpal tunnel) but flounder when things get too complex. This is why you consistently get the advice to make the trip to the ALS Center. It takes a specialist to diagnose a motor neuron disease. They say "hmmmm" less and offer more answers.

Good luck,

Liz
 
Status
Not open for further replies.
Top