Family history

[[email protected]]

Hello everyone my name is patrick... I am currently going through ALS testing. My father and grandmother both passed from this disease. I currently have speech and swallowing problems. Weakness in my neck and cannot lift my head. I was wondering if anyone here with ALS has ever had a ticklish feeling in their muscles while trying to sleep? It's hard to really explain it but it feels good to tighten my muscles or bend my knees or elbows too. Has anyone here ever experienced that feeling. Super scared right now due to family history

 

[Nikki J]

Hi Patrick
I am so sorry about your family. Being from a FALS family is a nightmare. I encourage you to join the face book group for familial ALS. There are people there who know their gene status and others who don't also there are diagnosed, symptoms and worried and no symptoms but worried.
Can't relate to the tickle feeling but good luck in your testing. Hope you are seeing an ALS specialist

 

[Atsugi]

Patrick, please stay in touch and tell us how it goes. --Mike

 

[[email protected]]

Thank you nikki for the info and quick response. I'm sorry to hear it is so aggressive in your family. I have 2 daughters myself and it scares me too death.. And Mike will do. Fingers crossed

 

[LifeEnthusiast]

The ticklish feeling you are experiencing sounds very much like restless leg syndrome -- a common and benign, though irritating, occurrence in a good part of the population -- ALS or not. I'm not a doctor, so I can in no way say one whether you have ALS or not. I can't even say it's RLS. But I can say that RLS does give you that tickly feeling that makes you want to move your legs or tighten your muscles for relief. Both my Mom and Nana suffered from it and this is how they described it. Wishing you best of luck on your investigations. Hope everything turns out positive. Keep us informed. All the best.

 

[[email protected]]

Yea I thought about that too. But it's not just my legs it effects my whole body. It's wierd. I really hope it's something else. Alot of my symptoms are hard to explain. I'm not very good at wording things but I will keep everyone informed

 

[Atsugi]

My Restless Legs at the age of 28 developed into a powerfully jerking whole body launch-off-the-bed jerkfest at the age of 60. I feel the tickle throughout my legs and arms whenever I foolishly attempt to physically relax or sit for a long time. The worst is whenever there's even the slightest breeze from an ceiling fan--my left leg will definitely kick. A single drink of wine will guaranty an evening of bouncing around my bed.

I take Mirapex, also called Pramipexole before bedtimes and airline flights to control it.