Myasthenia Gravis
 

I have one simple question that I can't get my doctors to answer one way or the other. Quick back ground info: (1) was on 60 mg Pred for 5 months, then started going down. Got to 17.5 and double vision came back. Went back to 20mg. daily (2) added CellCept 2000 mg/day in January 2010 (3) added Mestinon in April and double vision disappeared completely (4) a little over a month ago my legs (from hip to knee) started feeling like they were full of lead. They were weak and heavy to lift. I asked the drs. if this was due to MG or the 40 lbs I had gained on Pred, etc. GOT NO DIRECT ANSWER. SO, I am asking all of you - HAVE YOU EXPERIENCED THIS "LEAD LEG" FEELING? If so, what has your dr. said or what have you done about it? Three weeks ago I was reduced to 10 mg. of Pred and today I began reducing the CellCept in half since my vision is better. All by drs orders, of course. Last night my upper legs were so heavy I didn't think I was going to be able to get out of the chair and my left knee throbbed all night. I just wish they would tell me what is causingit. When I mentioned it was listed as a side effect of CellCept the dr. just shook his head back and forth as if to say "no". If it is because I have gained weight - just tell me. If it is something that just goes along with MG - just tell me (although they have told me I have "only ocular MG). I just want an answer. Hope someone out there can give me some info to ease my mind. My emotions are already all over everywhere from coming down on the Pred dosage, I can't add anymore stress! Thank you.::(:confused::mad:

Well Hello Kathie!
 

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Here's a big 'Teddy Bear' hug for ya!
Thanks for introducing yourself! You've found a wonderful place for support
Here is the MG forum direct link, click on:
http://neurotalk.psychcentral.com/forum77.html

It's a pretty active forum and they should have some good input.

Just wonderin.....do you also have 'burning pain' with your heaviness in your legs?

Caring
Rae
:hug:

Hi Rae: I sometimes have a burning in my hip joints, but not necessarily in my legs. My legs feel bruised to the touch when I try to massage them and feel like the skin is stretched so tight across the leg. I am on 10 mg. diuretic/day.

Oh dear..... :)
 

.....after I posted that, I see that you've been a member here for awhile! :)
Duh. So, you probably know your way around! Plus I think I've 'spoke' with you a few weeks ago actually! lol

The reason I'm asking about 'burning' pain, is because your post caught my eye when talking about that heaviness feeling. I know exactly what you are talking about.
I'm sorry you aren't getting any answers from the Drs. I know how frustrating that can be! Alot of us are in the same boat.

Part of my issue was because of becoming so inactive due to my pain issues (started in knees) and weight gain (from Lyrica, but have since quit that med and lost the weight), so the muscles in my legs became very weak (atrophy) which magnified my pain issues and it just seems to go in a huge circle of madness!
Does is hurt to climb UP stairs?
Do you hear a 'popping' noise in your knee (crunching sound?)

Rae: I wouldn't say it hurts to go up stairs, but it is a struggle to get to the top. I am out of breath and my legs are very weak by the time I reach the top. I haven't noticed a popping noise - yet.

yep
 

Weak muscles fer sure :o

When you get back down to your ideal weight, it'll help alot.
I did this as an 'self-awareness' experiment to make me realize how much strain it actually does put on our bodies to carry around the extra weight....

Walk around the house with a 10 pound bag of potatoes for about 10 minutes. After awhile that 10 pounds seem like 40!!

Regarding the 'lead leg' feeling, I was told to do hamstring excercises.....
yeah :) fun. But it did absolutely nothing to help my burning neuropathy pain.

Great to have you here, Kathie!!
 

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Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help.

There are great number of fellow members here to assist as possible. My thoughts and prayers are with you.

Again welcome, looking forward to seeing you around.

Darlene :hug:

Hi Kathie
 

I have had MG for a year and a half now. I have been on every med and have done every treatment inclouding thymectomy....so maybe I can help....I am not sure what you mean about your legs feeling full of lead? What I can tell you is that I have weakness in my legs do to MG and it feels like they are heavy and hard to lift per step...at my worse my legs turn to what I refer to as "noodles" and I walk with a wobble as if I have no control of my legs although I do. If I continue with activity I feel a burning sensation I compare it to the pain you feel when doing a squat and cant take it any longer before you stand...only the pain doesnt go away for me unless I rest for a significant amount of time. For the most part, I do not feel these things unless I have pushed my limits...so I have to know what my limits are. Prior to treatment I felt these things all the time regardless of medicine...so you may not be on the right dose or med for you....remember, everyone is different and the doctors have to make a treatmentment plan that is best for you. Be patient, my "plan" took a while to find, but I am doing good now and count my blessings...please ask me more if I can help =)

Love
Zayna