Do i have ALS?

[emt500april]

Hello,

My name is April. Im 29. I have been having severe muscle weakness/cramping for awhile now and been having fasculations for last few months. For the last 6 months or so my legs just cramp severely after i stand for any period or time or walk. And then for the last 3-4 months my arms have been cramping severly when i do laundry or i have been trying to redo my kitchen for last 3 months but the painting hurts my arms severly.
I have also been dropping some things in the last few weeks. Also been having trouble talking some.
I do have ALS in my fathers side of family. My great grandfather died of it. My great uncle died from it also. And my grandfather is showing signs too of it. And my younger sister has been having some of the same symptoms as me too.
I do have extensive medical hx. I have had a pacemaker for 4 years now. I had problems with the electrical part of my heart. I have problems with blood clots and factor five, so im on coumadin.
I went to family Dr the other day. And told her my symptoms. She said i had decreased strength in my left arm. And my reflexes werent very good. So she ran alot of blood work and everything came back good. So she sent me to a neurologist.

I went to him and he looked at me and asked a couple of questions. My visit lasted about 10 mins. He ordered a EMG and cervical xrays the next day.
Had EMG and he said everything looked ok. The EMG litterally took 8 mins. He done mostly just my legs.
He said he thought this was all just stress.

Im stuck right now in what do i do? Do i just wait to see if i worsen. Or do i go to the ALS clinic about an hour away and get a second opinion?
Do i suggest to get the gene test since i have it strongly in my family?
Please all help me on deciding.

Thank you
April

[glupavomomiche]

Hi April,
Sorry to hear you're having these symptoms and that ALS runs in your family. Big bummer!
It's great that you've already seen your GP and a neuro. I guess the real question is whether or not the neuro you saw has any experience at all with ALS? I saw several who had no experience whatsoever, and I think it DOES make a difference. So my suggestion would be to go to the ALS Clinic and see someone you know is very experienced making this kind of di ag no sis, and put the matter to rest in your mind. Hopefully the clinic neuro will be able to give you a firm not-ALS opinion and you can seek a different answer to the problem. Stress CAN do these kinds of things and the stress of worrying about something being wrong can definitely make things worse, so keep in mind things might not be QUITE as bad as you think... the mind can play some funny tricks on you! Good luck and let us know how it turns out!

[Ms. Pie]

I agree with Sarah. See a Neurologist that has experience and get a second opinion. I pray it isn't ALS but you need to know for sure what it is and get treatment. I'm so sorry you even have to think about this Sweets. Good luck and keep us posted. Hugs to you!

[Nikki J]

Hi April

I absolutely agree with the opinion from an ALS specialist.

I am from a FALS family too. my sister has als now. I do not yet (I hope never)
About genetic tests. Right now go and get your opinion. if and I ,pray not you have als they will offer genetic testing. if you do not have it and you have an identified family gene it is something to consider. If there is not yet a known family gene though you probably would not benefit. they could test for the known genes (very expensive I think) but there are still FALS families with no identified gene so a negative test would not be that reassuring
Good luck!