Could this be PLS?

[dalvin]

Don't know what a home trainer is but an alternative to a cane, one guy I know uses a hiking stick, looks kind of like a ski pole but is made for walking. Important thing is to avoid falls. I realize that as a young woman you might find a cane to make you look older but alternatives that serve the same function will work. As a plus, a good walking stick can be used for self defense too

 

[Dutchie]

I am not thinking about a cane yet. Does it takes the pressure away in my calves?

 

[dalvin]

what it does is to give you a third balance point to help prevent falls.

 

[Tokahfang]

My preferred step between free walking and using a wheelchair is forearm crutches. They come in a lot of varieties now, and the spring assisted ones are fantastic. They aren't as convenient as using a wheelchair, but they are a real winner when your desire and capability of walking wins over that convenience, and a good core body workout to boot.

 

[Dutchie]

Thanks for the tips! I have so much pain almost every night.. In my calves. It is so weird the longer I am awake the more pain I get? I don't know what to do with this it is really annoying. Anyone with the same problem?

 

[IhavePLS]

Hi Dutchie,

Welcome to the forum - and so very sorry to hear of your symptoms. You do need to find a neuromuscular specialist (not a general neurologist, but someone who has seen the "outlier" neurological diseases -- like PLS).

Dutchie, many PLS symptoms -- such as fatigue and malaise --while characteristic of PLS are also associated with innumerable other conditions and/or are symptoms had by persons who are well. What makes these kinds of symptoms so challenging, however, is that they tend to make PLSers suffer all the more. In my case, beyond pain and that awful feeling of spasticity, it is the "flu-like" (malaise) symptoms that are most irritating (emotionally and physically). I believe this sensation must derive from inflammation - perhaps overuse of limbs (?)....

You are very young, but the symptoms you list in your initial posting certainly resonate. My advisement is that there are many, many current and historical threads on this PLS sub-forum from which you can learn. When I first came here, I learned how to complete a word search of important terms...try this, as the folks here have superior (read: first-hand!) knowledge of and insight into PLS and HSP that even the very best of neurologists -- those who have never experienced this disease -- could ever have.

A final comment: PLS is a diagnosis of exclusion. Therefore, your symptoms coupled with no significant study findings ARE themselves still a "finding." In other words, a finding of "nothing" in truth means a finding of "something."

Hang in there!

Mike

 

[IhavePLS]

Thanks for the tips! I have so much pain almost every night.. In my calves. It is so weird the longer I am awake the more pain I get? I don't know what to do with this it is really annoying. Anyone with the same problem?

Dutchie, the spasticity and pain in my calves always causes me to describe my lower legs to feel as if I'm wearing very tight socks or a tight band around my calves. When I first began to have symptoms (mainly lower legs), I was told to change my statin (cholesterol reducing drug) -- statins can cause GREATER pain in the legs, adding to what is already untenable pain and spasticity. So if you've recently been put on a statin (or you've been placed on a NEW statin), be sure that you let your doctor know.

Baclofen and/or tizanidine will usually help (or valium).

Mike

 

[Mike in Maine]

Dutchie,

Mike is right, I had leg pain 24/7 before the Baclofen, so bad at times all I’d want to do is go to bed. Ask your doctor about Baclofen for the spasticity it works. I have tried all three (Baclofen, Tizanidine, Valium), find relief from the Baclofen and the Valium, the Tizanidine knocks my socks off and I can’t take it. Right now I take 90 mg of Baclofen and 5 mg of Valium at night this seems to be working best.

 

[Dutchie]

Thanks for the great replies. I will make an appointment with my doctor! I also will try gin tonic. I've read some things about that!

 

[Bad Balance]

Why was my post removed?
If this is done, a pm should be sent with an explanation

 

[Nikki J]

Gerry If you saw your post on the forum and it disappeared I think it was a technical glitch i can't find it anywhere ( and I can see content deleted by David and the other moderators). Are you sure it posted? I have lost a few posts of my own by hitting wrong key.

 

[Dutchie]

I didn't read your post! The tonic doesnt seem to help me.. Im am drinking a lot but I still feel the same, but probably I have to be patience. Does anyone recognize the feeling that you only can walk on your toes... because of the cramp?

 

[AKmom]

I didn't read your post! The tonic doesnt seem to help me.. Im am drinking a lot but I still feel the same, but probably I have to be patience. Does anyone recognize the feeling that you only can walk on your toes... because of the cramp?

I haven't been able to walk on my toes for about 10 years. Last time I tried, I tore a tendon in the back of my calf, according to the doctor. Now I am just too weak to go up on my toes.

I use baclofen, tizanidine and valium on occasion to help with the pain. Baclofen is the one I take the most. Last night I upped my tizanidine since I take such a low dose anyway an not even close to the max dose. Seemed that my usual med dose wasn't cutting the pain enough to go to sleep and I didn't want to take a valium (as it causes other issues as side effects with constipation).