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Yaga

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I've spoken to a doctor and still was unclear how this cramping phenomenon works with MND patients. Here are my questions, and a brief story of myself (Yes, I know I've been on here before).

1. Are your cramps sudden, and often during periods of inactivity?

2. How long do the cramps last?

3. Is cramping in your case an upper or lower motor neuron sign? Is it a byproduct of spasticity?

4. My Story: (21 year old Indian Male) I had brachial neuritis for 5 months and have thus far recovered from that. My legs have been behaving very weirdly. Occasional knee buckling, but I've been told that is too sporadic to be of concern. However, here is something else. My left gluteus muscle cramps up very easily. I like to stretch my legs before I go to sleep and this is when it happens. I am not a very athletic person and I was running to class to get there on time, and did so twice and ended up hurting a muscle or something. This hurt SO BAD, if I moved my leg the wrong way or sat the wrong way the muscle would be throbbing (not shooting pain, ik what that feels like). Anyway, I just put it off on my poor athletic ability and did some stretches, etc. However, for the past few days, right when I wake up in the morning that muscle that I must've "Pulled" and my left glute feel like they've had a workout and feel very sore and painful, despite the fact that I've been sleeping for several hours.

I went to my PCP 1 month before Here's Her Report:

- No obvious limb weakness in legs
- No hyperreflexia
- I'm assuming no clonus
- No spasticity (As per my Physical Therapist)
 

GregK

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Sorry, lad, we seldom answer this type of question as it gives hypochondriacs and health anxiety nuts fuel for their mental diseases.
 

Atsugi

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My PALS had no cramping in the beginning.
 

gooseberry

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Are you properly hydrated? Have you cut out caffeine? Do you sleep well? These are more common causes of cramping.
 

Yaga

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My PALS had no cramping in the beginning.

Thank you very much Mr. Atsugi. I apologize for being an inconvenience again. It's just been kinda nerve wracking. Hard to get an appt. with my neurologist.

Just 2 questions:

1. last night I sat on my dinner table and did that knee tendon reflex thing and my leg shot out. I used a pair of scissors.

2. I am a flexible person so I tried to test my own clonus. I bent over, placed one hand on a knee and the other under the balls of my feet before rapidly dorsiflexing the foot. My foot started kicking out. It did this 3 times and stopped...I rly dunno what to think?

Please help Mr. Atsugi...

Maybe I do have a mental disease, and maybe I need to see a counselor but my neurologist barely spends enough time with me to answer any questions and my PCP gets annoyed...
 

Nikki J

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You can NOT test your own reflexes. No one can. It just isn't valid. I don't believe you can validly test clonus either and even IF it was a few beats of clonus is a normal finding.

Self testing of reflexes ( and presumably googling how to do it) is not a healthy behavior. Please get help to deal with your worties as you work with your doctors
 

Bestfriends14

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Your PCP and neuro are dismissive of your compulsive worrying because there is nothing to worry about. That's why.

You cannot self diagnose clonus or brisk reflexes; that's to be done by clinical exam only.

You know what's nerve wracking? Actually having ALS, which you do not have. What's nerve wracking is wondering when your other leg will stop working. Again, that's something YOU do not have to worry about. Lucky, very lucky, you.

Please move on and get the psychological help for your health anxiety that you so desperately need.

It's time to let it go.

Btw, my PALS has next to no cramping.

Take good care of yourself.
 

ShiftKicker

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Yaga-

Unless you have something new to report from your doctor, please stop posting about self testing (this is obsessive thinking and results are NOT legitimate) or continuing to list your subjective impressions here. There is absolutely nothing the people here can do for you.

Please take a step back and understand the following- this forum is for supporting people who have a terminal disease and their caregivers. Some people kindly answer the questions of those who have specific questions about troubling symptoms- but this is not the focus. Once you have been answered by multiple experienced people that they think your symptoms do not fit the ALS pattern, you need to listen to them. This is not a social group for diagnosis seekers, nor is it an appropriate place to ask people with a terminal disease to continuously reassure you. Once people have been told "not ALS" it is inappropriate to linger here for a whole host of reasons.

No one is telling you that your symptoms don't mean something- they ARE telling you you do not have ALS. Continue working with your doctor.
 

Yaga

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Hello everyone, my sincere apologies for being an inconvenience to any of you. I cannot say that I understand what you are going through because that'd be insincere of me, as I am not going through the same thing (as it would seem). But you truly are an amazing and helpful group of people, and I hope you all find peace and much love!!

I am sorry again, it has been mentally trying for me in the past few weeks, but I don't think it's anything compared to what any of you go through on a regular basis. I guess I needed a bit of tough love and I really do need to get off my ass and stop feeling worked up over things.

Thank you for whatever support you all have shown me thus far.
 

Yaga

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Yaga-

Unless you have something new to report from your doctor, please stop posting about self testing (this is obsessive thinking and results are NOT legitimate) or continuing to list your subjective impressions here. There is absolutely nothing the people here can do for you.

Please take a step back and understand the following- this forum is for supporting people who have a terminal disease and their caregivers. Some people kindly answer the questions of those who have specific questions about troubling symptoms- but this is not the focus. Once you have been answered by multiple experienced people that they think your symptoms do not fit the ALS pattern, you need to listen to them. This is not a social group for diagnosis seekers, nor is it an appropriate place to ask people with a terminal disease to continuously reassure you. Once people have been told "not ALS" it is inappropriate to linger here for a whole host of reasons.

No one is telling you that your symptoms don't mean something- they ARE telling you you do not have ALS. Continue working with your doctor.

Shiftkicker, I have some good news for you!! I went to see a NP on campus at my university today (student health services). I got an actual update. All of my reflexes in my legs were 2+ (which is apparently normal), and leg strength was normal. I asked him about spasticity and if it's possible to have it without hyperreflexia, but he didn't really give me a clear answer but I just left it at that...But yep there's the update :)
 
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