Other ALS forums?/New to ALS/Presentation

[petterson]

I`m new to this ALS-thing. To be honest I haven`t even been diagnosed but I think I`m classic ALS-material. The worse thing about (probably) having this condition is the fact that I (probably) won`t be there to see my five year old son grow up. This autumn I was in the shape of my life until it began going downwards. Now my left calf gets tired from walking just a few meters. That`s quite a change for a 30 yo enjoying his running and walking in the mountains. My upper body strength is as good as ever. The whole thing is just strange...

Anyways: Is this the go-to ALS forum? Are there other forums I should check out?

Thanks!

P

 

[Jamiet]

Petterson,

I'm 32, undiag and have many symptoms. I ahve a 5 yr old boy and a 6 mos. old girl, so i am really struggling. Be careful not to self diag. What are your symptoms. Also, have you been to an ALS clinic.

I'm in the same boat as you, i have a 3 day workup (where they eliminate everything else). YOu should look into this, it will save you anxiety.

What are your symptoms, it could be a myriad of other things...

my symptoms started in Aug 06..

regarding the forums, this is one of the better ones.

Good luck to you!

Rgds,

Jamie

 

[petterson]

Hello Jamie!

I`m sorry you`re here. I hope that it is something else you`re experiencing! I know everyone must die sometime but it is the powerless feeling I get from thinking about my son that is so terrible.

My symptoms: I`ve had fasiculations for a couple of years turning up here and there. Some months ago they started to settle in my left calf in particular. Early this year I bought new telemark-boots and noticed there was mutch more space in the left than in the right. Didn`t think mutch about it at the time. Just left out the extra sole in the right boot and it felt just perfect..

During summer I did a lot of fysical work and didn`t think mutch about the fasiculations (they tend to dissapear when the muscles are flexed, of course). Then later in early autumn when I did more of the sitting-down type of work I noticed the fasiculations had gotten worse. Still I didn`t put mutch thought into them.

Late september I ran in a mountain-type race and did far better than last year:?: One week later I noticed that some of my toes felt powerless. Also I noted that the left foot was just skin and bones. Now I finally got a bit worried. I went to a doctor and later a nevrologist (no tests were made) who found nothing wrong (power in toes and legs where A+). I was very happy and naturally quite relieved. Now however I`m having trouble walking even short distances because of cramps/fatigue in mye left calf. Also the fasiculations are getting worse by the day.

Symptoms, summed up: Fasiculations, loss of muscle, fatigue

regards

P

 

[Jamiet]

Wow,

we're just alike. I started with fasics in Aug 06, but can relate symptoms back two years now. Then came Sept, chin cramping, seen ALS specalist Oct, passed everything, but only brisk reflexes. How are your reflexes and tongue? Long story short, 9 weeks later, rt foot 1/2 size smaller, tongue looking scalloped, fatigued and left leg and arm getting weak cramps all over! I'm going for this 3 day workup, you should look into the same. Where are you from?

 

[petterson]

Actually I`m norwegian (wish I was asian or african or something, they`re immune, right?). The only symptoms except the things going on in my left leg are fasicualtions occurring now and than all over my body, sometimes very strong other times more gentle. Reflexes and tongue are just fine, I think. Also there is a tiny twitching between my thumb and index-finger.

The thing I worry most about these days (except thinking of my son) is the fact that I have to get my insurance to cover the disease. Therefore I`m keeping far off anything that could resemble a doc until they are OK, and hoping the things noted in my medical journal (by my MD and the nevrologist) still allows me the insurance. It could take some months. It sure would be nice to have a magic pill for my mood but I would have to see a doc to get one:roll:

regards

P

 

[Jamiet]

Ahhh, i read that in your earlier post. Yes, get the insurance, life and long term disability, before your diag. with anything. YOu should also look into aboutbfs.com, you cold still have benign fasics, but with shrinking feet, that could be a problem. If you don't portray any other symptoms, like reflexes, spacisticy, it could be Kennedy's Disease or Mystenthia Gravis, which would be a good thing! Have you had any bloodwork, how was your CPK or your muscles enzyme levels?

Also, what i do, is when i have an appointment, i always get my medical records and keep my own file, this way, i have all my medical records. I can also review them myself.

Keep in touch!