Hi there. Hope your weekend was good.
i can relate to what you are saying. I can only tell you from my own experience and from what my Neuro told me. So here goes;
i had a flare back to back last year and the second time my legs were more affected then the first. They were (and still are) just as you described. Sometimes they get sooo bad that I just can not pick them up becasue they feel like lead! Literally....So, I have to sit down where ever I am at that time....Yep! I have sat down on the bottom shelf of the Vacuume isle at Wal Mart before....Lol
My Neuro told me (Now this is me..I can not say this will hold true for you) that the deficits that I have now w/ my legs are not going to get anybetter now....He says that becasue it had been a while since that last BAD Flare that by now if they were going to get better they would have by now....Hope I am making sense :)
I am sorry that you are having those problems w/ your legs because honestly.....It is a bit scary to me sometimes! I hope you get some answers soon.
what has the Neuro said about this? Have you reported this to him so that they can have it charted nin your file?? AND...you may want to jot it down on a notepad at home w/ times/ and dates/ and what you are / where doiung.
Good luck to you. Have a Great week!
I am due to see the neuro June 28th and he has not seen me since before this last relapse, but I will be telling him for sure!!.
How long has it been for you since your relapse ?? Just wondering how long after is it not going to get better.
I have had no improvement in 6 months...is this too long to get improvement??
Thanks for your reply. Yes it is very scary for me too. Just glad you replied so I don't feel so alone and scared as the neuro appt seems so far away.
Perhaps you could get on the Cancellation list so that your appt can get moved up a bit....When I have an appt that's to far off for my liking, i call about once a week to see if there are any cancellations.......99% of the time I get in much earlier.
While you are wairing though, I would put a call in to the nurse this week and have her to note in your chart what has been going on. She may touch base w/ the Neuro and then he himself may have you to come in earlier. If not...well at least it is noted in your chart!
Wow! 6 months? That is a while...But I can not say if it will get better or not. Has it gotten any worse or pretty much stayed as is? I try and do gentle stretches at night before bed....Does it help??? i don't think so as I still get the "Lead" legs..Lol
I know that it is good for you to stretch though to keep those muscles and all .....well..stretched ;) I can say too that I have some days that are worse than others also. How about you? Do you use a cane?? on really bad days If I HAVE to go out I will use my hover round <<>>
Nope! You are not alone!
I forgot to add on my first reply that I can NOT even walk for 30 minutes w/ out Lead legs! Now that is really Yukky :( Then after I have laid down for a while...when I get up, sometimes they feel like Jell-o....I can't really explain it...Kinda weird though...
Yes I know the jello legs very well. It use to be just jello but now the lead legs. I dont walk far on my own so usually hubby holds my hand and I lean on him till I get to the car. How long can you walk??
Actually it has got worse since the last relapse in jan. Is 6 months a long time?? I had a relapse in Aug so never recovered properly before the Jan one.
Please tell me how long its been for you since your relapse that made your neuro think it would have got better by then. Is it less than 6 months?? Dont worry about upsetting me I would rather know what time frame to expect improvement rather than live with unrealistic expectations and then if it does get better after that then it will be a welcome surprise. I know everyone is different but as your neuro seems to think a certain time past would be unlikely to improve, I would like to know.
I agree with you about the yucky legs. I hate the feeling cos they are usually trembly as well......horrible.!! Then I keep telling myself off for over doing it and swearing I'll not do it again.....that is untill the next time LOL.
I can't help it though. I love walks in the gardens on a sunny day LOL.
By the way I am on the cancellation list already :)