Time from symptom onset to DX??

[uvachick]

I have been going to several neurologists for 3 1/2 years now. I have had two EMGs - the most recent in Jan 2005 on my right leg that was clean. My symptoms started two and a half years ago with muscle cramping and slight fatiguing of my right arm. At times I could barely type without stopping to rest. About 12-18 months ago I started having fatigue in my right leg as well. Now I am feeling some mild cramping in my right arm and leg as well as the fatigue. I am not weak, however...I have learned the difference between fatigue and clinical weakness. I have started to have all over muscle jerking which mainly happens when I am awake. Sometimes my abdominal muscle will contract while I am laying on my side and makes me jerk. About two months ago I went on a 20-mile bike ride that went up hill most of the way and after about two hours my muscles hurt SO BADLY that I could barely walk for two days. It wasn't normal soreness...it was PAIN!

My question is...how long does it take for ALS to show up? Could I have it and it is taking a really long time to present itself? What is the timeline that most people experience? I know it is different for everyone. I have another neurologist appointment scheduled for in two weeks but I am afraid that it will be another "I have no idea what is going on" conversation and he may just tell me to keep waiting to see if I get worse over time. I am getting married next May and I am terrified that I won't be able to walk down the aisle by then! Any thoughts from you lovely people?

[Mike27]

That’s a great question!
I can remember back a couple of years before my dx, I was having some trouble doing physical things that I didn’t a problem with normally. Cramps, pain, that kind of thing.
I’m sure others on this board can attest the same. I didn’t think anything of it at the time.

As for your upcoming marriage, if it is ALS (second opinions!) then know that everyone progresses differently. Some quite rapidly, others over a period of years. It would be impossible for anyone to say how you will be physically, by next May.

I would say just take each day as it comes. If your EMGs are coming back ‘clean’, then take it as a blessing! Concentrate on your big day and don’t worry about things over which you have no control.

I hope this somewhat helped, and a big CONGRATULATIONS on the wedding!

Cheers!