Leg cramps as a first symptom?

[tevs]

Hi everyone, I'm new to the site. I've been reading many of your stories and my heart truly goes out to everyone. I'm looking to see if anyone else had symptoms that are similar to mine as one of your first symptoms. My grandfather passed away many years ago from ALS, my father who is 60 now does not show any symptoms. Currently, I have very few symptoms and I know many will likely say I'm over-reacting but please understand, I have a history of leukemia (back in 1994 I had a bone marrow transplant) and am cancer free. So unfortunately, this has heightened my anxiety about other illnesses. Basically, what I have is leg cramps. The cramps only occur at night but it's always prior before going to sleep, it happens anywhere between 7pm to midnight before I go to sleep when I'm sitting on the couch relaxing. I rarely ever wake up during sleep with leg cramps. It happens 2 - 3 times per week and lasts many minutes, coming in waves, one leg (calf), then subsides and actually hits the other leg (calf). Sometimes it may be the cramp that makes my big toe curl towards my chin. I walk and walk to try to get the cramp out but it usually lasts anywhere from 20 minutes to it has been actually several hours for one episode. To the point that I was hysterical because of the pain. I've had blood tests and all my tests are normal as far as a regular blood panel and all my vitamin levels are normal (including B12). I really have no other symptoms, no muscle weakness that I'm aware of, no twitching other than maybe the occasional twitch but sometimes I wonder if I can even trust my own judgment because of being so "tuned in" to what I may or may not feel in my legs. Anyways, thank you for reading this and I would appreciate any feedback. I did make an appointment with a neurologist for 10/24 who is also a sleep specialist so will see what he has to say.
Thank you all and God bless.

 

[Ms. Pie]

My Mom gets leg cramps and I used to. Mine were not from ALS I don't think. Stretching the calves before going to bed eliminated any night time cramps for us both.

 

[davegud]

tevs,
Good luck with your neuro appointment. I would like to recommend that you focus on treating the cramps vs. focusing on the "cause" of the cramps. I was formerly obsessed with the cause of my cramping and fasciculations, however my testing repeatedly came back abnormal, but inconclusive. I currently do not have ALS and a tentative diagnosis of Peripheral Nerve Hyperexcitability. There are EXTREMELY rare forms of UMN dominant ALS/PLS which tend to start up with odd and ambiguous symptoms. I urge you not to latch onto the fear of anything like this. Clinical weakness is the big thing. Without weakness (not being able to do something that you used to be able to do), you're in great shape. I am currently self medicating with tonic water (quinine), magnesium, B vitamins, & taurine. Bring lots of questions to your appointment and by all means let them know about the family history. Once again, good luck!

 

[notme]

HI

Leg cramps aren't a beginning sign of ALS. Weakness is. Leg cramps are pretty common at night, actually. There are some meds that can help with preventing them. I think I'd start with just your GP---you don't really need a neuro for leg cramps.

Good luck to you.

 

[tevs]

Thanks everyone for your replies. I have gone to my GP previously and he did some testing I believe for circulation issues but found no issues with my circulation. He said it may be Restless Leg Syndrome but with that, I keep reading about a creepy, crawling feeling in your legs with the need to constantly move the legs. I don't have that sensation. The thought came to me about ALS because of many posts that I have read of people that had leg cramps for a short amount of time to even a few years before being diagnosed with ALS, that was the reason I thought maybe that could be the cause. Reading online (yes, I know...bad idea), there are many sites indicating cramps as a symptom. I will see what the neuro says....I'll try to focus on other things as this constant thinking about it obviously does more harm than good. Thank you all again. :smile:

 

[momofsixkids60]

Tevs,

Not to sound rude; but did you read any of the stickies above your posting? These will help you understand the progression.

Kimberly

 

[KissJ]

My mom had leg cramps and has had them for years. She doesn't have ALS. She is 77, cramping but still healthy and well.

 

[Al]

Actually I had leg cramps before diagnosis but don't think most others do.

AL.

 

[Zaphoon]

Leg Cramps! Ha! I laugh at them and I am the King Of Leg Cramps!

 

[Alyoop]

You are right in that leg cramps can be s symptom of MND, but of course they are a symptom of other things as well. Bit like a cough is a symptom of TB, but doesnt mean you have TB because you cough!
Cramps were my first symptom, and preceded the weakness and foot drop by 2 years. I don't have ALS either.
If you have cramps and no UMN signs on examination then it's unlikely you have a symptom of MND.

 

[tevs]

Thanks again everyone for all your posts. I'll see what the neuro says. Alyoop, you said you had cramps two year prior then the foot drop, but you do not have ALS?

 

[Alyoop]

That's correct. I had cramping in my lower legs whenever I worked my legs hard. Never went to a Dr tho! I started getting hip weakness and tripping a couple of years later. After another 3 years of tests, I got a working diagnosis of PLS, as I have progressing upper motor neuron signs only.

 

[Mollysol]

Has your doctor tried you on 'Quinnine' for the night leg cramps.

A friend of mine had night leg cramps and started drinking tonic water ( it has quinnine added in it ) and it eased the problem for her . may be worth a try .


best wishes
x Maryx

 

[trfogey]

Just curious, tevs: what other symptoms do you have that make you think that you have ALS or another MND? I mean, there's only dozens of other causes for leg cramps that don't involve rare fatal diseases -- why did you pick ALS to become fascinated with and fixated upon, in spite of the lack of evidence to support your idea?

Also, I note that you never stated how long this problem has been happening to you. If you've read as much about ALS as you claim to have, you know that there are other symptoms that go along with cramps and that the symptoms become more severe and more widespread over time. What kind of progression have you seen with your symptoms and how fast are the changes occurring?

 

[tevs]

I have tried drinking tonic water in the evening. The cramps still continue in the evening 2 - 3 nights per week so I really don't see a change. As far as the length of time, the first one hit me 4 years ago and that was the one that sent me to the hospital after they would not stop for 3 hours. After that, the occurrence was less frequent and then at some point, the cramps subsided for a period of months. For the last 6 months or so, they came back to the frequency of 2 - 3 nights per week. So as far as worsening, the cramps have only gotten longer in duration in the fact that this has been going on for 6 months. I have not had any other symptoms. I only thought because my grandfather died from ALS that this may be a link to my symptoms as well because of reading of people that had the leg cramps for years before further symptoms developed. I do apologize if I offended anyone by asking the question, I am sure it gets tiresome to read posts from people like me who are over-reacting and don't have progressing symptoms. I only posted because of what I said above about having cramps for years before getting additional symptoms.