Forum

Disease Advancement

I was properly diagnosed with MS this September. My previous GP had not told me of an MRI scan in 2008 that showed “clean signs indicating MS”.

I have had very clear relapses in 2007 (loss of feeling in one hand and deafness in one ear) and May - July 2011 (right leg not working very well, reduced walking distances and increased fatigue) and November 2011(further deteriation in my leg and my right hand suffering from pins and needles and sometimes struglerling to write.

I did have smaller relapses between, but as I didn’t know about the MS I didn’t record them.

My 2007 relapses totally recovered and all the functionality came back. However, I’m pretty worried about what has happened this year. I’ve not recovered anything like the way I did then and wanted to know if others had similar experiences from their MS advancing?

Cheers, Tim

Hi Tim,

I’m sorry to hear you are not recovering as well as you used to, but I’m afraid this is a fairly “normal” feature of the disease.

I am only diagnosed relatively recently - about a year ago - but looking back, I had a history of several relapses before that, from which I had always fully recovered. This was one of the things that made me NOT suspect anything sinister, because I’d never heard of RRMS, and assumed anything that got better by itself, without treatment, couldn’t have been anything very serious.

Bit of a mistake there!

Thankfully, my relapses have not been very frequent, but the last couple - especially the latest one, that led to my diagnosis - have taken longer to recover from, and recovery hasn’t been so complete. So I’m much more aware of being ill now, even though I’m still not obviously disabled to an observer.

I think this is just the way it goes, I’m afraid. But having said that, if you’ve had a relapse only recently, it’s still very early days to know what the long-term effects are going to be. My last one took nearly a year to clear up, and although I’m not quite back to the state of health I was in before it happened (and never will be, I don’t think), I’m a heck of a lot better than I was.

Tina

Hi Tim,

One thing you’ll get sick of hearing is “everybody’s different” - it’s true that no two people seem to follow the same path, welcome to the unpredictable, frustrating world of MS! I’ve had symptoms since I was 12, I was finally diagnosed when I was 28 and I’m now 36. I’ve been using my walking stick permanently since a fall a year ago (I tripped on an uneven pavement and landed on my face, no permanent damage, but a severe confidence knock) - to start with, the stick was more for a confidence thing, but gradually I have come to use it more for balance. One thing I have found helps me (esp with sensory stuff) is hyperbaric oxygen, I’ve changed my diet to cut out red meat and my energy levels are slightly better than they were, I was on beta interferon since my diagnosis, but I’ve recently swapped to LDN to see if that will help. The NHS can/will not give you much more than DMDs, so it’s worth researching “alternative” therapies yourself, then give them a go, see what will work for you.

Luisa x

Hi Tim,

Don’t give up hope just yet as I for one stand as living proof that a person with MS can get better. I used to walk with a stick (Malcolm) but then strangely found that I was more sure footed without one, and have done without for three or so years. My condition does seem to be getting that bit worse again, and this morning while delivering our village newssheets thought that I could do with Malcolm’s services again, but as I say, don’t give up hope as this MS beast does fluctuate. And as Tina says, you are only pretty recently out of this relapse.

Good luck to you and don’t despair too soon.

Moira

Tim, Im sorry youve just found out your suffering ms. However symptoms come and symptoms go. Some resultant problems may stay with us as a permanent feature whereas others improve and slowly get back to a normal level.

Ive learnt over the years that the brain is indeed a marvelous healer given time and repetitive exercise. Ive found neuro physio excellent for keeping as much of the body mobile as is possible and where damage occurs limiting our lifestyle adjustments made.

Was told it can take a couple of years for either healing or some improvement to show, so we must never give up hope but have to put our own penneth worth in too by trying to counteract discrepancies.

The whole nature of ms is its surprising symptoms but one thing is for sure, we each try not to let it rule our lives. There is often fear in the beginning until one gets used to living with it and its unpredictability. Never forget, there are msers who live near normal lives with it, some have to make adjustments to their lifestyle however most see it as a blip and life is for the living.

I hope you cope well, get used to the ups and downs and enjoy your life. New meds are always in the pipeline so dont give up hope.

Best wishes

bren

xx

Like Tina says, it’s quite common to recover really well in the early years. I did the same. Unfortunately, MS does have a habit of catching up with us eventually - as the damage increases, our body finds it harder to work around it all, so some things slip through and become ongoing problems.

Since you’ve had two relapses this year, you should be eligible for DMDs (disease modifying drugs) - has your neuro suggested them? If they haven’t, it would be worthwhile asking. They can help to reduce the number of relapses and delay the onset of progression, as well as reducing the severity of the relapses that we still have.

I hope you recover really well from this latest relapse.

Karen x

Cheers everyone for all your helpful words and suggestions!

At the moment drugs wise its just baclofen and gabapentin so no DMDs just yet. Really lucky with my healthcare team (Neuro, MS Nurse and GP) at the moment.

Also been so lucky as I’ve managed to carry on working full time with some adjustments with home working, but coming home and having a couple of hours sleep is needed.

RIght now is time for that afternoon nap that is part of life!

Tim

Hi Tim,

I hope you are well and still RRMS with no progression.

I know you posted some time ago but I was looking through the forums today trying to find someone that had experienced what Im currently going through ad it seems my answer is u :slight_smile: Iv completely lost my hearing in my left ear which i believe has given my quite bad loss of balane/vertigo its approaching week 4 now and im really hoping its not going to go on much longer.

I guess what I wanted to ask you was how long did you lose your hearing for and did it come back completely als did your GP prescribe anything to help.

All the best

Jodi x