Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
Over the past three months, I have experienced a lot of symptoms. They seem to be coming more and more and present worse each time. I started with a sinus infection in January that pretty well took away my ability to walk and talk. Eventually it all came back. In Feb. I had a stomach virus that again took the walking and talking out for me. Now in March I have a cold/sinus illness and my speech has not been affected yet, but walking is again a challenge. I also have a new symptom this go round which is extremely bad balance. I can't even describe what it is like. I can't turn a corner without holding onto something. Even holding something doesn't necessarily help me stay on my feet. Showering is in my opinion dangerous as I cannot lean back to wash my hair. I feel like the muscles in my back are just as weak as my legs and are making me somewhat like a rag doll. I also am experiencing a lot of blurred vision lately. I know that illness is bringing on these symptoms. I worry that one of these times, they will just stay even after the illness has gone.
My question is, is this rag doll feeling that I have a common symptom of MS? I don't have a diagnosis yet. I get a spinal tap on Wednesday and hope it will show something.
My question is, is this rag doll feeling that I have a common symptom of MS? I don't have a diagnosis yet. I get a spinal tap on Wednesday and hope it will show something.
I too suffer from balance issues, and turning a corner is difficult without holding on to something. I often lose my balance when I turn my body. Also, showering is dangerous for me too as I cannot close my eyes and tilt my head back to wash the hair, without vetigo hitting me. But, walking around daily I do feel like a "rag doll" and find that the description is worthy of the feelin I have daily. Walking problems, balance issues, and the fatigue added in makes me feel like a rag doll!
You didn't mention if you had an MRI? I hope that something does come up to identify these problems you are having with the spinal tap. I don't wish MS on anyone, but it will be good to put a name on what the problem is that you are having. It certainly sounds like MS symptoms you suffer from. Good Luck!
It helps me stay mobile & able to enjoy where I'm at more. It's a blessing, not a curse!
Sometimes you have to do what you have to do for your health. Maybe you should invest in a cane or a walker my friend & the world be damned what they think about it cause it's way more important at this point that you don't fall & really injure yourself, than anything else at this point...I was where you were at awhile back before I started using a cane & even with the cane it was getting hard.
I had the same issue you had where it seemed that each "flare" was worse than the last & in between flares there was always some symptom hanging around. Still is that way, But it's kinda lessened maybe 5% since the end of last year when I started seeing my new amazing Neuro. who actually took the time to care what was going on with my health.
Before that I was just cycling doctors (with a cane mind you) & not getting a one to even care, it sucked! But now, I got a caring Neuro. & it's awesome!
I also have allot of rare MS symptoms (along with the typical ones)...Epilespy (of many types), tremors & "Cerebellum Ataxia" (where your motor functions take a nosedive...from movement to speech...try looking this up. I will post some articles)
So, Don't feel alone on the motor function issues my friend.
Hey, Ask your Neuro. about "Cerebellum Ataxia", if you got a good Neuro., he will be able to shed some light on this issue for you as well...
http://www.life-in-spite-of-ms.com/ataxia.html
http://www.unitedspinal.org/msscene/2009/03/03/cerebellar-ms-a-case-study/
Take care,
Stay sane!
P.S...I barely stand in the shower anymore! What with the Epilepsy, the tremors, the heat intolerance & the Cerebellum Ataxia...I have a little shower ledge built in & I have something soft under my bottom & use a shower hose thing to wash my hair. I would recommend that for what you are going through.
Also, with the Epilepsy...I have sworn off baths all together!
We ALL know how it goes playing the "waiting game." So we are all hear for you any time you need an ear to listen or a story to share or advice given. :-)
Take care,
Stay sane!
By the way...I get the "rag doll" effect from one symptom of the "Cerebellum Ataxia" & also from one of my seizure types I get called "Drop Attack Seizures" (Where my muscles just go limp...like a rag doll & I fall straight to the floor, sometimes into things. YAY!...NOT! But hey, when I don't fall into something, like when I'm in a grassy field for example like yesterday (after shaking...cause sometimes my seizures start small & spread & sometimes they are just small), then I count my lucky stars it was just grass.
Cause, you can't stop from being chronically ill...but you can feel blessed that at least for one moment it might of not been fun, but at least it didn't get too complicated, you know? Like...Thank God I just had a regular seizure (It sucked it was at a seizure awareness event) but at least I didn't fall into anything & go to the hospital, so that's something.
There is always a positive side to being sick. I know it doesn't seem that way most of the time, but we spend enough time being sick as rabid dogs already without wondering when the next shoe will drop. I am going to be happy for what I do have & the old adage that..."It could always be worse!" & try my best to not worry about what I've lost already.
Not always easy, I know, trust me...but every day I try my best!
Of course, sometimes, it's just inevitable to fall regardless, but that's just the way some MS symptoms are, but to minimize the frequency is big.
Taking Keppra: for Epilepsy & Topamax: for Epilepsy & "Migraines" has also helps about 3-5% with the seizures, tremors & Cerebellum Ataxia as well. So the walker & the meds. is helping a small amount.
There is a famous saying in the chronic illness world...
"Some improvement is better than none at all!"
Take care,
Stay sane!
P.S...Sorry for all the replies my friends. MS gives me "Brain fog" & I remember in chunks...if at all & the Epilepsy from the MS gives me "brain Fog" as well! What "fun!"
I heard this when a friend with MS takes enough Baclofen to help her spasticity but then it affects her strength and makes her limp. Finally she got a baclofen pump so that she can take more baclofen for her spasticity yet it affects her weakness less.
Maybe trying the Amprya might help the rag doll symptoms. You could try the 4AP (see other post on that topic) and it might help the conductivity of the nerves. It seems to work better for those who are affected by the heat.
BTW, I don't even try to bring my head back to wash my hair. More like bring it forward.
In a pinch, use a paint bucket in the shower to sit on. I did when I hurt my shoulder and it worked while I needed it. Never had to pay the big bucks for a shower seat.
Good luck on your MRI. Hope that they figure out something to help you.
Without this group I would feel as tho I am alone and going insane. Thank you all so much!