In Your Experience

[marlo34]

Between attacks or relapses, do your symptoms completely disappear/get better?

For example, if you lose some walking ability, when you are in remission, does that ability typically come back 100%?

I am just wondering what your experiences have been, specifically, if your symptoms completely disappear in recovery.

[marlo34]

I just want to thank you all for sharing your experiences with me.

[doublevision1]

The only attack I fully recovered from was my bout of optic neuritis.  I have residual damage from all other attacks that persist, some I believe after 4 years are permanent deficits: neuropathic pain in limbs esp left hand; numbness, Lhermitte's, Uthoff's, periods of vertigo and numbness, fatigue which is sometimes profound, poor concentration, mild swallowing difficulty, occasional word finding difficulty, poor balance and clumsiness, nystagmus and double vision brought on by increased body temp (which also worsens just about every other symptom).

I sound like a train wreck and though it's very frustrating at times, all of this is manageable.

[Sidesteps]

My experience has been more like Two-pack. I was diagnosed after a pretty rough year and half.

My symptoms came on suddenly in May 2010 and I experienced rapid progression from there. Unlike others, I never remitted early on (which, along with my age and onset, makes me a high risk.) I had what appears to be repeated flares, with never getting into the healing/remitting phase, for a year and half straight.

I never fully recovered from the more severe flare in the fall of 2010 that left my body very weak and reactive for nearly a year. It was very rough on me but eventually I started noticing a break in the severity of symptoms and the time began to spread further apart between.

Just like Two-Pack, when at my worst I was just thankful that my symtpoms seemed to be gradually getting better. I recall thinking to myself last summer that it was a few days where I didn't notice facial-eye pain, weakness and my vision was much better. I have had a lot of symptoms but I'd say nearly 75% to 80% of them have improved enough to not even consider them.

It has been over two years since the onset and, I while I have permanent damage, I am starting to see a relief between flares and symptoms. This has been a slow process for me and maybe some day I'll make it through without certain chronic symptoms but for now, I'll take the days and/or months.

It is amazing how your nerves can find a way to heal or regenerate which, so far, due to this experience, I remain hopeful that even in the worst of flares there is hope that things will get better. Take care ~

[supermum_ms]

I'd have to say that in the begining, i'd have periods of time where some strange thing would happen and then it would completely go away until the next time. Truthfully i didn't always know something wasn't normal. eg a patch of tingling, to me feels about the same as goose bumps but with out the visible bumps, odd to be displaying cold sensations when it was a hot summer day lol

For me everything changed with my big bang in 09, there were hints prior but nothing that really gave a heads up, that life as i knew it was about to change in such a big way lol. Things didn't really pick up until i'd hit my 40's, none of it prepaired or compared to 09, my mobility, verbal skills, cognitive, physical strength and my vision all significantly changed with one big bang. I knew my brain had fried out on me, knew it was neurological, just knew i couldn't kid my self anymore, it was abnormal!

My first walk on the wild side, the human string puppet, balance gone, stuttering and slurring my words, lost all nouns, seeing double, leg muscles spasming others twitching, tremor rumbling and the fatigue just totally flattened me. I worked hard, using every scrap of knowledge i'd gathered over the years working with disabled children, I didn't know what I was up against but i knew in my gut, that doing nothing but waiting until after dx, was not in my best interest, so I worked.

Not 100% of anything came back after 09, it took months and months for things to improve but even when i felt I was on the road back to 'normal', life would bring it back eg hot days, walking to far, getting tired etc just to remind me it was all still here, hiding out until triggered. New episodes have unfortunately closed my 3-5 hour window of looking and sounding normal-ish, down to 30-45 minutes. I'm still optomistic that it'll stretch to a bigger window, a bit nutty to be practise how to walk normally but my brain seems to keep forgetting, so i keep practising. lol

Cheers.........JJ    

  

[sllowe]

I'm a strange variation like some.

I recovered from walking sideways (well that's what it felt like anyway), slurred speech swallowing issues and complete loss of fine motor skills, and the inability to  make my body parts move naturally.

I'm left with cognitive issues, inability to mult-task like I use to, and some other chronics (more-so mild versions of above especially if I'm tired). I'll take those over the relapses any day. So there is definitely hope.

Great question!

[debgen]

Hi there!

I am realizing that umfortunately, I NEVER fully recover from my relapses.
Over the years my mobility has continued to decline after each relapse.

I do what I can to keep myself as mobile as possible. I stretch ad excersise daily, attend PT weekly (4 years now!) and take meds for the spasticity in my left leg.

I truly hope that you will make a full recovery !

Good luck,
Deb

[wiggles94]

I am a gray area patient - possible MS

My sx have never gone away in the almost three years we have been trying to figure me out.

Ms neuro said if it is MS - treatment may not help this type -

My sx numbness, tingling, burning, fatigue - all of these come and go and are worse when tired or hot.

I asked my neuro at visit last week if he thinks these will ever go away - he thinks probably not -

started PT to help with tripping -

Good luck
Carol

[saucygrl]

I was officially diagnosed last November, but I know that things used to come back to me with some effort such as physical therapy and swimming.  Yoga tends to help as well.  The last few flares I've had have been so close together that there wasn't time to get back to 100%.  I'm afraid some of the damage from them is going to be permanent, but I will still give it all I've got to get it back.  

Chris

[marlo34]

Hi luv,
If you don't mind me asking, what is holding your doc back from officially diagnosing you?
I see my neuro in two weeks and I'm 50/50 on whether he will outright dx me or not.
Thank  you for your reply. I do appreciate it.

[luvnGod]

I haven't officially been diagnosed, but the MS Specialist has ruled out everything and says he believes I do have MS.  I have clear relapses and remissions.  When all of this mess first started I didn't even know what was going on, b/c I would have a relapse and then be fine for a long time.  Now between them, some things clear up and others kind of stick with me.  My gait improves a bit, but not much.  I still have numb, weak left arm and leg, but again, it's not as severe.

I don't know if this is helping or not, but I think in early stages it's as if you have a 100% remission, but the more damage caused some things stick with you.

I pray you are well and your questions here get answered.
Stacie

[marlo34]

Thanks two pack.

[twopack]

I might have had 100% recovery early in the disease but improvement was a very slow process that occurred over a period of several months.  The best I remember is that eventually I was no longer regularly aware of a deficit.  It was such a drawn out recovery that I was happy just to not have to think about such things.  Returning to work and reasonable family life were my goals.  When I got there I didn’t look back to evaluate the recovery.

I'm not sure I ever really returned to 100% though because I was never again fully confident I could master anything I decided to give my best effort.  Symptoms came and went over the years but I didn't spend a lot of time trying to figure them out.  I hadn't been diagnosed with my first symptoms and MRI so tended to believe the nonsense that I was getting too old to expect anything but a downhill slide in my health status.  (After all, I was over 40 by that time!)  

It was a long time before I realized I had lost abilities in a step type pattern at a faster rate than other women my age.  I didn't revisit the MS diagnostic process until almost 20 years after my first dramatic symptoms.