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Lily68 11-05-2009 12:59 AM

Life is changing so fast...
I think whilst I'm online you are all sleeping on the other side of the Atlantic.

I have previously posted on a different message board because I'm waiting to see a neurologist to have a diagnosis. Twenty years ago at 23 I had a diagnosis of MS. I was 'unwell' for 8 years and didn't work for 3. Then I appeared to be well so asked for a further opinion; it was confirmed that I didn't have MS.

However, I had continuing problems with pain and fatigue which was diagnosed as fibromyalgia. In the last five years I have experienced a seasonal dizziness; last year I was referred to ENT but my ears are fine. This year the dizziness appears to have become a permanent balance problem. It's constant! Drives me batty at times!;) Anyway other symptoms which I have experienced before have all returned like a chorus! They seem aggressive and progressive. One symptom I am curious about though is the non-dilating pupils; I wondered if anyone has experienced this? It's very odd....

Also in your experience of MS am I having a relapse? Is this why everything is aggressive? I'm waiting, as I said to see the neurologist, so the other question is about treatments; without accessing treatment asap does it mean I am more likely that damage would be permanent?

Life seems to have changed very quickly which is disconcerting.

MSNik 11-05-2009 05:27 AM

Re: Life is changing so fast...
Hi lily. Sorry to hear about your distress. Since you have done so incredibly well for so long; its possible that you are having a relapse....but to be in relapse mode, you would have never had anyone tell you it WASNT MS to begin with.

So, were they wrong? Or what caused them to say it WASNT MS? Was this based on how you were feeling better, or was it based on testing?
Keeping in mind that Fibro and MS often go hand in hand, and many patients can have both--its possible that what you are experiencing now is related to your Fibro issues, and just as likely that its related to your MS issues.

The only way you are going to know is to start testing again. Its been so many years and tests have come so far- that what you were told 22 years ago may not have any relavance now at all.....however, starting with a good Neuro and going thru it again is probably a very good idea.

You asked, if you do not start drugs right away, could it become permanent? If you mean the symtoms, yes, if it is MS and it is ignored, symtoms can become permenant damage-thus resulting in permenant issues; however, that means ignoring those symtoms completely. If your doctor was to prescribe steroids to bring the swelling/ inflammation down, it would probably help.....if your doctor was to put you on an Interferon, a MS drug- it might not. MS Drugs do not treat symtoms, but rather help to prevent progression and additional symtoms from starting....and those take 6 months of use before they really start to help.

You do need to be in the testing process and talking to a good Neuro now- thats the first step, from there, getting tests done and seeing what shows up will answer your other questions.

I hope this helps you...and that you feel better soon.

Lily68 11-05-2009 05:43 AM

Re: Life is changing so fast...
Thanks for your reply. I think you are right a great deal has changed in all the years that have passed in testing and treatment. My original diagnosis was undoubtedly more thorough than the second opinion. However, I'll keep an open mind and go through tests again.
I have done well in the interim years; completed a degree, trained as a teacher, brought up two children: one with Autism. Just want more of the same! But I am realising life will have to slow down a little.
It is difficult for those around me to understand. Thanks again for your reply; need a rest now. Such a lazy bones!

MSJayhawk 11-05-2009 07:51 AM

Re: Life is changing so fast...
I became a teacher for my sons after my MS returned with a vengeance. Yes, you may need to apply some "brakes" and take the slow lane for a while. You have within you a means to control some of the triggers of MS. There are some triggers you cannot control.

You might need some days of pampering, but you can get through this. This is simply "Phase II" of your life :)

Lily68 11-05-2009 11:15 AM

Re: Life is changing so fast...
Days of pampering; yes a very good plan. I shall devise a list and take advantage of the time off from work.

Trigger spotting could prove useful too. I'm trying a gluten free diet just now; only on day two. I was inspired by some work being done at Sheffield University. Nothing to lose. I find taking short breaks without noise or visual stimulus quite helpful; a sort of switching off I suppose. A regular sleep pattern helps.

Anyway, thanks for your useful reply. I am appreciative of the support because as I said in my original posting I think it's hard for those around me to understand. Also I don't want over burden them.

JodiH 04-29-2010 05:35 PM

Re: Life is changing so fast...
Hey Jayhawk, can you explain how it came back w/a vengeance== how many years were you in remission if at all and how long did the big relapse last? What's your day to day now?

MSJayhawk 04-29-2010 08:14 PM

Re: Life is changing so fast...

I had a pretty good 20 years of somewhat normalcy! When it suddenly turned, I went to flat on my back in a matter of 2 weeks. Now my day to day depends on the day!

My 11 year old is enrolled at the university so my time is chaperoning him on campus, I have a service dog and rest between his classes. When I was teaching him at home, I taught from my powerchair or even my bed.

During the summer months, I have to stay indoors during the heat of the day. My wife is the back-up chaperon for my son if I am unable to make it.

Day to day is one day at a time. I try not to dwell upon my limitations and count my daily blessings. :angel:

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