Permanent damage?

[lilmissmedic]

I know I am still in the possible MS phase, so it may not be the cause of my symptoms, but I was wondering if any of you have had permanent damage as a result of a flare up? More specifically permanent loss of sensation in various places? My left leg "went to sleep" back in January from my knee to my thigh, and has yet to return, I am now getting that tell tale numb sensation on my right leg when my shorts rub against my thigh.

Is there a chance that I will get feeling back in my left leg and is there anything I can do short of being on a DMD to prevent losing feeling completely in my right leg?

I can't start treatment because I havn't been diagnosed. Anyone have any input?

Kari

[doublevision1]

I have some permanent damage from previous flare, and also have had some troublesome symptoms remit.  

My severe, 24/7 doublevision and nystagmus persisted for a year or so.  It improved, very slowly, to about 95% normal.  There is still some mild double vision on my left lateral gaze, something I can easily accommodate by turning my head slightly to the left.  It's stayed this way for 3 years now.

My second major flare brought with it painful sensations in my feet; it felt like I was walking on a surface of sand, marble and broke glass.  It has returned during subsequent flares but has always remitted when the flare is over.  

The neuropathic pain in my left hand up my arm to my elbow appears to be permanent.  It started 3 years ago and has only worsened since then.  It feels like there is a squeezing, crushing pressure on it, my fingers are mostly numb, sometimes a sensation radiates from elbow to hand like when you hit your funny bone.  My hand also often has a sensation of severe sunburn and feels gritty like sand is being rubbed against it.  My fingers sometimes want to curl inwards and it takes a concerted effort to straighten them.  I no longer type 80 WPM and I am constantly dropping things.  More than once a kind stranger has tapped me on the shoulder to hand me the $20 bill I unknowingly dropped because I didn't feel it.  I also have a large patch of numbness on the left side of my torso, I only really notice it when I shower.  

Lhermitte's was my very first MS symptom in 2006, and since 2008 it has not remitted.

All of my lingering sensory symptoms are temporarily worsened while exercising.  Within 10 minutes of brisk walking or jogging I feel numb from my ribcage down.

My first major relapse included severe fatigue, dizziness, vertigo.  These symptoms have never really remitted, though day to day are not as severe as when I'm in a flare.  Same with my hoarseness and swallowing, those started in a subsequent flare and come and go.

I have some cognitive issues re: word finding; and I trip over my words sometimes.  I don't know when this started, it seemed to come on very gradually.  It could certainly be due all or in part to my meds incl. amitriptyline and gabapentin.

With my latest relapse I have a large patch on my back that feels like sunburn.  Showering feels like needles hitting that area on my back. Time will tell if that's here to stay.  

Fortunately all of these symptoms are manageable.  They definitely affect my quality of life, but I remind myself daily things could be a lot worse, so for that I'm grateful.

[johnniebear]

Initiation of Early Therapy
Accumulating evidence indicates that the best time to initiate disease-modifying treatment is early in the course of MS.39 Data indicate that irreversible axonal damage may occur early in relapsing-remitting MS,40 and that drug therapies appear to be more effective in preventing new lesion formation than in repairing old lesions. With disease progression, the autoimmune response of the disease may become more difficult to suppress. Both intramuscular interferon beta-1a therapy and subcutaneous interferon beta-1a therapy have been shown to reduce the cumulative probability of the development of clinically definite MS in patients who present with a first clinical demyelinating episode and have two or more brain lesions on an MRI scan.41,42 Based on these data, the National Multiple Sclerosis Society43 supports the initiation of immunomodulating therapy at the time of diagnosis.

Hope this cut & paste helps some

Johnniebear

[johnniebear]

Hope soon you will have answers for comcers.

I don't think DMD'S will repair any current damage on your CNS.  Once your start on DMD'S they take time to be effective .

Your system does try to repair itself,  it's never the same,  its like having a flat tire & a patch is placed on it .
The tire is still good & will work it just never the
same

Take care
Johnniebear..

[macaroni68]

Lol! after proof reading what I wrote. I meant after you call your neuro not mine. Ha! and also your general physician as well. :)

[macaroni68]

Well. I had a numb hand and arm last year, and everything has come back to normal 99.5% by I have lost some sensation in a very small part of my forefinger. Since it has been a year I am sure that it is permanent.

I think the rule is that if a year goes by without improvement that it signifies permanent damage, but I am not completely sure.

If you think you are starting a new flare I would call my Neuro. I don't know if you have one. Or my general physician and let them know about the new numbness. They may want to start some new tests.

Usually, and especially, in the beginning of the MS disease course, and if you are RRMS you will more than likely get the feeling back in your leg. There isn't really anything one can do, short of steroid infusion, to shorten a relapse, and sometimes even that doesn't work.

I don't think there is a way to prevent a flare from happening, even if you are on a DMD. Is that what you are asking? Though DMD's do slow the progression of the disease down.