Frightened and scared

[Ozzy7034]

I'm a 46 year old male. I have had leg cramps for several
Years. In the last 3 months, along with the cramps I noticed
My right leg has become weaker and weaker. I went to see a
I have a lot of muscle twitching in my legs and stiffness. I walk
With a limp my right leg is so weak. The neurologist has ordered
All the tests and is very concerned it is
ALS.

 

[Atsugi]

Does your leg feel weak, burning, exhausted after use?
Or does your leg actually not hold you up, even first thing in the morning?
Very big difference.

 

[Nuts]

Ozzy, I'm sorry that you are going through this. It is good that you are being checked by a neurologist and getting the testing done. It sounds like you are doing the right thing. How are you holding up?

Becky

 

[Ozzy7034]

It holds me up but is weak I favor the left one. It feels like it could just give out the
Muscles twitch in them and it feels numb sometimes.

 

[Ozzy7034]

Becky I'm really scared haven't been able to sleep last night and it's just scary.

a

 

[Nikki J]

Sorry you are going through this. Do you know what the findings on your exam were? What tests are you having? Did your neuro list things this could be? If you have only had a clinical exam there are a lot of things it could be besides ALS even if your exam was very suggestive of a motor neuron disease

 

[Ozzy7034]

I have had only blood tests they were normal. I'm going to have MRI, lumbar puncture, and nerve tests.

 

[Ozzy7034]

She did a Exam and there were some worries, she slapped my back arms and
I'm not sure what that was for? Maybe she didn't like me lol. But she said she seen
Quivering of my muscles or something.

 

[Nikki J]

Some neurologists flick the muscles to try to elicit twitches but I don't think getting them to happen is diagnostic. Things on exam would be muscle rigidity or spasticity, abnormal reflexes, clinical weakness she could detect on exam, muscle atrophy she could see- things like that. Unless you had blood tests at least 3 weeks ago there are definitely other blood tests to be done before a diagnosis would be made. If you have not had the MRI lp and ncs/ EMG yet that round of blood work has probably not been ordered yet. It sounds like this neuro is going through appropriate steps. I know it is hard but try to take it day by day. Any of these tests could send you in another direction.

 

[Ozzy7034]

Yes, you are right. I think mostly it's the weakness and twitching that I have
That is so scary, I get scared to fall asleep thinking in the morning
It may not move or work. This has given me new appreciation
For many things it makes you see things differently, every day is
A gift and it has made me very humble.

 

[Ozzy7034]

My leg is holding me up but is very weak, when I'm laying or sitting I have twitches in my legs, when I'm walking it feels like it is going to give out and feels like it is going to cramp up. I feel a cold sensation sometimes and will move my leg to make sure it is still working. Heat seems to help with the spasms. Im scared to sleep anymore afraid it won't work when I wake up. The neurologist confirmed it is very weak.

 

[KimT]

Having leg cramps for several years leads me to believe that part is something other than ALS. Heat can help cramping no matter what is causing it, sometimes.

I'm glad you're seeing a neurologist. Do you know if the neurologist specializes in motor neuron diseases or is she/he a general neurologist? Any of these tests can point to something other than ALS.

 

[Ozzy7034]

Hello Kim, she is just a general neurologist. She does want me to do the nerve test with a specialist in motor neuron diseases. All this is new to me I'm glad there is a forum like this.

 

[Ozzy7034]

Blood tests showed vitamin d level at 32 and b12 at 240 they want me to take 1000 b12. They don't believe this is what is causing the weakness or twitching in my legs at night though. If this is ALS how long would it take for my leg not to work at all? I'm scared to sleep at night thinking when I wake it won't work. I try to stay awake as long as I can.

 

[Nikki J]

If it is any encouragement b12 was one of the few things my neuro thought worth testing as an alternate cause ( being gene positive FALS ALS was for me, unlike most people, always the most likely cause of my weakness)

About the leg not working. There are no tometables for ALS ( which hopefully you do not have). However even though our first symptom is often sudden failure it is failure of a muscle or small muscle group. For your whole leg not to work a lot of muscles have to fail so you would have plenty of warning. Are you able to walk around the house?