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happy

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I am wondering if anyone can tell me about the cramping that comes along with als symptoms? I have started cramping in the legs it feels like a charlie horse is coming on but never fully happens. Just soreness and fatigue in legs. My regular neuro is now asking for a second opinion. I have an appt with a als specialist on mon. he is asking for this new neuro to do a emg of my legs. the last emg I had was in my upper body which only showed denervation in the ulnar muscle. Can anyone tell me what this means? I am tired of getting the runaround! Other than that life has been great, still taking one day at a time.

Happy
 

awieleba

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happy,

I wish you well on monday! I have no answer for you. But, I get that same feeling in my foot. It is like I am going to get a cramp but it never happens, more of a bad ache.

good luck and let us know how the emg goes!

april
 

wright

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It doesn't have to mean a thing, other than you're getting some aches and pains in your legs. And if anyone on here that does have ALS gets aches and pains like you're feeling, it still doesn't mean a thing (if someone had a brain tumor and got headaches, it doesn't mean that if you get headaches you have a brain tumor, too).

I think the ALS specialist will finally give you peace of mind. I wish you luck when you go. Take care.
 

crystalkk

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Happy,

Good luck with your appointment....
 

happy

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thanks for the replies. Wright youre right! Just because I have certain symptoms does not mean I have this disease. Although, I do wonder at times why I have all this twitching and muscle looseness. It's just weird. I try to keep really busy. I really dont have alot of weakness though. I can still function pretty normally. However, I have noticed that it is a bit harder for me to walk long distances with my calves. But I imagine if I used them more it might get them more in shape. It is sort of a strange pulling of events. Your calves feel weak, you dont use them, they get weaker and you think you have als! My god, just let me know for crying out loud! Well, as I mentioned before I get my second nero on Monday...thanks for all the good wishes...
until then, it is football season. My sons are both playing this year it is awesome. I will post some pictures on my profile. My son made two touch downs today! One is wide reciever (my 14 year old) and the other is line first to the right of quarterback. Both awesome!

Live life to the fullest!:mrgreen:
Happy
 

Peg B

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Hi,

I have written about this before and I don't mean to sound simplistic, but please try tonic water for your cramps. A year or more ago I used to have terrible cramps that would wake me up at night. For almost a year I drank tonic water, about 1 and 1/2 litre a day. The tonic water prevented my cramps for over a year and now I don't need to drink it and I still don't get the leg cramps. I also wear socks to bed. If I go bare foot to bed I will still get foot cramps that wake me of and force me to walk them off.

I have a differential DX of ALS vs. MMN. So please try to deal with the symptom of cramps and try not to worry about the DX. Fago tonic water costs about 90 cent per litre. I love the taste of tonic water so that helps, but I would have gotten used to the taste to get rid of those cramps. Best Wishes, Peg
 

happy

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Please help again!

I had my neuro appt today. This was my second nerologist. He is an als specialist. After getting a list of symptoms and doing a physical exam, he said that in the beginging he would have diagnosed me with Lou gerichs (sp) disease, but that sense I am not showing a lot of weakness ie I can still walk on toes and heels, push away with arm etc. he cannot be sure about a diagnosis until he does an emg of my legs and body. He was looking carefully at my body on the table looking for twitching, but my twitches are deep in the tissue. very few are on the surface showing on the outside. Are anyones elses like this? I am sorry for bothering you all again, but this is the never ending story...it's just that it is progressing.

Thank you,
Not so happy :(
 

crystalkk

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Happy,

I am sorry about your appointment, you are probably getting alot of axienty from what he said. (remember he said in the beginning when you described your symtoms he would say that was the diagnosed, not after he examined you though)
My twitches are both ways depending on where they are, but they never happen at the drs.
I usually get them at night when resting or if I am stressed and when i move the muscle they stop. When is you emg?

please try and think positive,
 

happy

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Thanks Crystal,

Yes, I am pretty freaked out right now. My emg is in two weeks. After reading alot of the old posts from others. I noticed that not every one that has a diagnosed has had weakness, My case disturbs me because I have been an athlete all my life. I started out very strong and this progression has taken me 8 months the worst happening with in the last 4. As i read others like PDaddy for instance I was reading his and I think I read that he still had strength in his legs. I don't know I am really scared. I do not have complete weakness but It is definatey was worst than my normal...how can you measure weakness? thanks for the response
Blessings to all
 

awieleba

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Oh Happy, I can relate!

I have the muscle looseness and twitching. Thinning (atrophy) of small muscles in feet and hands and same as you, my calfs are shrinking. I started with alot weakness while pregnant but wrote off to that. I then had thigh weakness but could get about. then twitching. (alot inbetween).

I can still walk on tips and heels. I can do all little things but I will have alot aching and weakness after. I dont know how they measure weakness when everyone is so different! They dont even press real hard in those appts! I was an athlete and worked out 4x week, tennis, pilates, etc. and I cant do any of that. I try and my muscle's shake. I can golf 9 holes (thank god for that) but the next morning I am a twitching mess.

My twitches dont always show up at the emg or dr.s, you cant always see mine or they are so fast that when it happens and I look they are gone. latley, I have had a few that I can see pulsing a few time in my calf or arm----this freaks me out and I am sure a bad sign.

at your next emg you ask them to do everywhere. both sides of arms, legs, and your back. I would get a muscle biopsy too. My symptoms have been over a 9-10 month period.

I wish you well.............

april
 

rose

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Happy, I'm sorry you didn't get any answers today, but, like Crystal already posted, the doctor said by your description he would have thought maybe ALS, but not by exam. The mind is a powerful thing, and that power of suggestion, when one reads these forums can have the potential to make us think that this is what we're experiencing. I think its a very positive that your new neuro is going to follow up with an EMG.

About the weakness, (and which comes first) I'm no expert at all, but I really do think that weakness has to exist first before the other symptoms for it to point to MND. Just with using myself for an example, every single area that problems have been found, have had weakness, and if I noticed anything at all, it was the weakness before something else. It was a measurable weakness. With my arms, for instance , I could not operate, or had extreme difficulty moving an aircraft door during my annual FAA qualification continuation training, and it was the same exact door(s) that they've had in the facility for at least 8 years now., and I'd never had trouble before. So that was a red flag. I also noticed I was having trouble raising up on one arm and supporting myself to turn over to my other side in bed at night.

The past 6 weeks or so, my legs have become progressively so much weaker. I wasn't looking at them for twitching, or wasting (I could only wish for some selective body wasting, starting with my thighs LOL) Then, the other morning I awoke to fasciculations on the outer side of my left ankle, the cat was laying against it and I think that is the only reason I could feel it. So, I got my leg around under the light by the bed, and sure as s#@t, the skin was jumping in a couple of different spots. Then, I decided to look at my right leg/foot, On the inside of that one there was some movement. too,

Since then, I, if I look closely, there is always a little bit of activity going on, I just don't feel most of it. Probably 80% of it I don't feel. If I have the patience to watch my hands, I'll eventually see some movement there too, but again, thats after I've had weakness in them for at least a year and a half.

I've started having much more visible, large groups of fasciculations, some I feel, some I don't in my legs. That vibrating that many of us get, still I don't ever see, its all sensation. Oily recently posted that she feels that is an UMN event, however my neurologist didn't really comment one way or the other about them.

So even though there are lots of variables as to how people have this awful group of diseases progress, there are also some "constants" and your doctor knew to look for them, but he didn't find them. I hope that even though you're still stuck in limbo, that you're encouraged about that!

Here's hoping you can get that EMG done in short order, and that you find out what's behind those deep twitches.

big ((hugs)) :)
 

laurel

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Gee Rose I'm feeling sick to my stomach reading about things progressing with you. I had my fingers crossed and said prayers that things would go very slowly for you. I'm still praying here for you.
Laurel
 

rose

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Gee Rose I'm feeling sick to my stomach reading about things progressing with you. I had my fingers crossed and said prayers that things would go very slowly for you. I'm still praying here for you.
Laurel

Thank you Laurel! I was trying mostly to reassure Happy and just using me as the example.

I was giving specific ways that my weakness manifested itself to me. I think the examples I gave stood out to me because they were so unexpected. I wasn't looking for them or trying to analyze how strong or weak I was. The biggest surprise was the problem I had with the aircraft doors in the trainer. I was struggling with the one style door, almost gave up, except that it would have disqualified my to fly anymore. I'd had difficulty with the other doors, the type that swing out like a regular door. This particular one raised up and down like a garage door would. In real life situations there is a power assist for it, one would just stand there pushing a button to raise and lower it, but we have to be able to show that in an emergency situation that we can do it without electric power. That day, the next flight attendant in line after me was this lady that had recently had neck and rotator cuff surgery. She'd been out of work for a number of months, and was probably 10 years older than me, and frail looking. So , I was thinking that if it had taken every possible effort for me to raise the door up and down, that she'd might as well just hang it up, (feeling sorry for her, right?) and she walks over to it, raises it up and then down without even flinching. :?

The internet and this forum are wonderful resources of information, but I feel that it is only natural for people to fear the worst sometimes, and then when reading just partial snippets of what others are experiencing it is easy to make those symptoms fit with their own, and then its so scary!

I remember writing out a detailed history for the first neuro that I saw, and feeling so prepared, wanting to just hand it to him and get on with the exam and diagnosis, and he wouldn't even look at it, he said he preferred to take his own history. He was very thorough, and I now understand why he did that, because we tend to interpret what we've experienced by what we dread that we have.

Happy, I really hope these two weeks until your EMG pass quickly for you and that you've got every reason to be "Happy" :) BTW, I loved seeing the pictures of your kids, you have a very attractive family. Hard to believe its football season already.
 

rose

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Hi,

I have written about this before and I don't mean to sound simplistic, but please try tonic water for your cramps. A year or more ago I used to have terrible cramps that would wake me up at night. For almost a year I drank tonic water, about 1 and 1/2 litre a day. The tonic water prevented my cramps for over a year and now I don't need to drink it and I still don't get the leg cramps. I also wear socks to bed. If I go bare foot to bed I will still get foot cramps that wake me of and force me to walk them off.

I have a differential DX of ALS vs. MMN. So please try to deal with the symptom of cramps and try not to worry about the DX. Fago tonic water costs about 90 cent per litre. I love the taste of tonic water so that helps, but I would have gotten used to the taste to get rid of those cramps. Best Wishes, Peg

Peg, when my doctor had me on Plaquenil (which is a quinine drug) for Sjogren's syndrome, my cramps were almost non-existent. I didn't know at the time about the connection between quinine and muscle cramps, or I'd have been downing tonic water on my own! Since being off of that medicine I do have cramping again, but not nearly as severe as they were before, have no clue as to if taking the quinine for a year had a lasting effect, or whether the cramping would have lessened on its own with the passing of time. Tonic water would certainly be a tasty, inexpensive thing to try. :)
 

awieleba

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Hi Rose,

Thanks for sharing, you are always so open and caring. In regards to you progressing. Do you think that you had this for awhile, when you were being treated for sojorns? Meaning that maybe your progression has been slow if you have had this for years and will continue to be.

My twitching is alittle like yours. When I lay in bed and my legs are against each other or the bed, I feel them firing off. I have seen only a few times of movement. When I sit outside with kids, I am always lookimg at my legs and dont see constant movement. I think that is the one thing that keeps me going.

I do agree about weakness first. I feel your weak when you cant do the things you use to and I cant. My docter says it is because I have not used my muscle and they are out of shape. I think that is lame. I have periods in my life where I have been sick and not worked out for extended periods of time. When I went to work out, I could do it but maybe not finish. WHen I try now, I cant even go 5 minutes. IN my kitchen I noticed it too, I use the same big pans I always have ( I love cooking and having a glass of wine) and I have noticed the pans seem to be heavy like my wrist is gonna give out or I have to use 2 hands.

anyway, sorry to ramble.

best wishes to us all! Happy~~~~over the next 2 weeks just over focus on your kids, that helps me.

apirl
 
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