Leg spasms a symptom?

[Hi Skyehy]

Anyone else have awful leg spasms with leg weakness? Just one of my symptoms. Wondering if I'm in the right forum...

Thanks,
Kate

 

[Ms. Pie]

Need more information before answering. What does your Doctor say about your symptoms?

 

[Hi Skyehy]

4 neuros and no one will give me a definate answer. They dont know. Seeing an A L S specialist aug. 27th. Undiagnosed 13 years and slowly, progressively getting weaker. Now i can't walk. Can transfer to my scooter. So much fatigue. No balance. Can't stand. Now my arms are getting heavy and tired. Choking on water. The disease stole two of my uncles. I hate it.

 

[Ms. Pie]

I hate it too Sweets. Keep us posted. My legs and hands are shot. My core is getting weaker too. It didn't take long for mine to be diagnosed though. Have you already gotten an MRI and EMG?

 

[Hi Skyehy]

Yea. They said everything was normal but that was back in 2005. This is in no way normal for a young person.

 

[Ms. Pie]

Hope you figure out what it is and hope it's treatable!

 

[CathyP]

My "limb" onset of ALS started in my right ankle. It was about 6 months later I started having the WORST leg pain I have ever had in my life. I have had cramps in my calves before at night but this "new" pain/cramp was from my ankle all the way up to the top of my leg on the inside of my leg. My right was getting weaker during this time.

 

[TedH5]

You really need to wait and see what your Dr's say. 13 years would cetainly be a long time with ALS but I am not a D r

 

[Hi Skyehy]

I agree TedH5. I don't want to be one of those annoying people obsessed with their condition. Early onset people tend to suffer longer and have very slow progression.

Thanks for being so nice and understanding, Cathy. I may ask you more questions privately.

 

[Hi Skyehy]

Thank you, Ms. Pie. I hope so too.

 

[notme]

If you've had issues for this many years, ALS would be very unusual. Not sure of your age, but ALS typically kills in 2-5 years.

Are you saying you think it's genetic ALS.? What reason have they gave for your need of a scooter? Do you have atrophy or only UMN issues such as weakness and spasms? That would be more in line with an UMN issue such as PLS or even MS.

since 2005 have they done no te sting?

 

[Hi Skyehy]

It could be familial since my two uncles (brothers) died from it. I know it's rare to have f a ls. . but onset was in my 20's. I'm 39. It's even rarer to have early onset. but, idk what it is. The scooter was so I'd stop falling. My legs are too weak to walk. My arms are getting weak it seems. Im choking.. My core is getting weaker. They only ruled stuff out like ms. Ruled out hsp. Ruled out lymes. Ruled out cp. No, no noticeable atrophy. Are you saying I shouldn't go to San Antonio and see an a l s specialist? I'm not sure but I heard early onset has a very slow progression rate. I tried to get an appt. recently but my neuro said he was booked. I don't want to waste anyone's time here.

 

[Toto's Dorothy]

Out of curiousity, may I ask what your heritage is?

 

[Hi Skyehy]

I'm a white girl w/ German, English and Irish Ancestors.

 

[Hi Skyehy]

I just want to stop suffering like this. It's been too long of a decline. And I want answers. Pls, if y'all don't think it's A l s I will get outta here.

Kate