Re: questions for MSJayhawk
--------------------------------------------------------------------------------At first I choose to post my message in reply to MSJay...but it looks as though it hasn't been read yet so I posted it once again as a new thread.
Hi everyone, I have been reading this board since 2005, I have posted but only a few times. The reason for that is I never found anyone's problems that related to what I was dealing with. I have actually known I had MS for the pass 32 yrs. but please let me say this . Even though I new of the MS it never present...meaning 'NO SYMPTOMS OF ANY KIND WERE EVER PRESENT' My onset of MS I'm told was brought on when I lost my mom to cancer in 1975.
I'm guessing that word Stress is certainly a nasty word and can certainly trigger MS as long as you have the gene the possibilities are greater and will cause it to rear its ugly head at some point if something should 'irritate and trigger' it. With my mom's passing had caused me a great deal of stress and caused my body to go numb from my feet to just under my breast<> for about 5/6 weeks and once it subsided it never returned ever again. With this numbness I never lost feeling, but it certainly was a numb feeling. Would or does the sensation of numbness cause you to lose feeling? because it didn't have that effect with me. I hope this doesn't bore anyone....think of it as something to do if you are bored anyway.
A little history would help and maybe a timeline so my rambling would be a tad more understood .The neuro at that time referred to the numbness as a stress related problem, knowing I was dealing with my mom's illness.. (1975).
It wasn't until 1983 that I was I told it was a strong possibility that the numbness was likely the onset of MS for me, so it might not have been a stress problem at all, but stress had certainly trigger the MS for me. Test were ran that said I had a degenerative disc. I guess degenerative means MS. But technology then isn't what it is today. I would think that a degenerative disc would have caused me backaches right? as far as I new I never had a back problem not even to this day.. I would think that a back problem would have certainly affected any sport activity...but nothing ever did.
I have a brother and sister who were both diagnosed at the age of 35 with chronic progressive MS....and once it started it came on very rapidly for them both. My siblings and I are all two yrs apart in age so of course, I thought oh crap! 'I'M NEXT'. But my 35th year came and went without incident..and to this date and time I still don't deal with any kind of MS symptoms... if you question that remark I will explain later if you want to question me. I'm guessing only because there's to to much that I would need to explain. But as far as what and how something did occur doctor's would n't call it characteristic of MS. Like the many different symptom I read posted on the board. My doctor always tells me I'm a health person in spite of the MS.
Let me squeeze this point in by saying.... "my onset in 75', was 5 yrs prior to that of my siblings diagnoses of PPMS in (1980). I guess you can say I have been totally the opposite of what they dealt with...and yet my numbness occurred 5 years before their diagnose of PPMS. So in other words....I guess you can say I was effected with my onset before they were and yet both of them progressed very quickly.
MSJayhawk, you said that you went into remission for 18 years, and had a pretty normal life. I haven't had any symptoms like the numbness I experienced in 1975, and I still wasn't taking any kind of a MS modifying drug either and I was living a very normal life. Besides I never had any symptoms to speak of since my onset in 75'.
I felt why put an alien substance in my body if I wasn't having any problems at all whether I new I had MS or not. So that goes to show us all just how different MS can be for each individual. Who know if I was taking an MS modifying drug would things be different for me now hummmmmmmmmmmm.... 'doubt it'. My opinion, if it wasn't for the auto accident I seriously think I would be just fine. Because in 1988 I didn't even know I had MS NOTTA!. I think the accident and everything that followed did me much harm.
Obviously the MS was lurking in my body....but unbeknown to me. As far as I was concerned I and everyone else as well thought the very same.... just a very healthy individual...so I guess I just put the MS out of my mind and just maybe that could have been the best thing that I could have done for myself.....why not if there wasn't anything to suggest otherwise. So I just enjoyed my life and continued my hiking, biking, tennis, women's softball...I even dubbled in lightweights, enough to kept toned and I enjoyed every minute of every activity.....now I saddly miss it all very much. Guys I'm telling you this just to establish, that MS was never a problem for me 'NOTHING" zero, notta, zilich.
Jayhawk...I only started taking copaxone, in January 2004 myself. and that was because I had gallbladder surgery and never did I have an inkling something was wrong...nope! didn't have a clue until fever woke me at 3:00 am .... my hubby called 911, I had a temp of 103º...I might not have a heat related problem with having MS but with a temp like that ...'.it was clearly a wipe-out' for me'. Never in my life did I ever feel like that. So I can only imagine how some not all feel with MS dealing with the heat in the summer months .
Back to the ER, Without any symptoms other then the high fever...I had many tests done since they couldn't fine the cause of my fever...they did a spinal tap...neg...they even considered meningitics not...they new it was somekind of infection but what???and why? hum!...Long story short it took them 5 days. Sure they got my temp ldown but it still was present just not at 103º any longer. And finally during one of many exmaminations as the doctor pressed on my stomach area which caused me pain, and that was done early on also hummmm! that was strange. The doctor said we finally found the culipit it was decovered that it was my gallbadder all along causing the fever. Finally, once surgery was scheduled for the following day, SURGERY PUT AN END TO THE FEVER ...zip! the fever was gone...yippy!! so it was well after my surgery that my neuro suggested I start taking copaxone. I was still hesitating to do any MS drug...again I still didn't have any MS symptoms to speak of plus they ran enough of test. So my question to my doctor was 'WHY' if I don't feel any different minus the absentence of a gallbladder
, lol. But he (neuro) felt it was about time I finally did start with something since year prior I hadn't taken anything. When I ask him why start if all the test MRI, x-rays, sonogram, etc show nothing has changed. His answer was a simple ( sooner or later that's just the way it goes and you will be better off later on)...So who ever I should be quoting from the board saying, (quote)<> ((eventually MS will endure))... <>Jay, I think you might have said that ,but let's hope a more progressive form doesn't apply to all.
Jayhawk, I also tool around in a power chair as well ever since I had my piriformis muscle injected in 1998, which by the way was caused by a chiropractic adjustment that's another story but that's how that buttocks left leg pain all started for me durinmg my chiro days since my accident in 88'. Oh...let me say that after 10 long years of suffering 1989 to 1998 with that very painful unrelenting pain the injections through pain management put a stop to it...immediately to. So I guess they were always trying to telling me it was MS...but I new and felt otherwise. All along they referred to it as sciatic leg pain....I always felt it was caused by the chiropractors adjustment. It was the internet that proved that the piriformis muscle will minic symptoms of sciatica.
They said that stress is very much a strong component (for folks with MS) with all the stress I've been through since my auto-accident in 1988, with all the bull they all' put me through drs and lawyers alike) my stress level should have gone through the roof....because they all put me through a tremendous amount of "STRESS" and that alone should have brought on a multiple amount of MS symptoms and it 'DID NOT' lucky I guess.
They say that stress is certainly a destructive ingredient when you have MS. fortunately it has never been an enemy for me...thank god.....with all I been through with doctor's and lawyers. IT was "A BAD BAD EXPERIENCE FOR ME".
Moore170, your right, as soon as a person knows they have a dx's of MS they should start taking a modifying MS drug to slow the progression down. I agree that would be the smart thing to do. But I'm betting that only people that do deal with MS symptoms would have reason to move on it. In my case there weren't any symptoms to be concerned about, and that would be my reason for not starting early on, with any MS drug.. With know problems why would I want to put an alien substance in my body unless I had a reason to. But I guess if I new then what I know now I would have...but once again I had no sx , besides back in the 70's there weren't the MS drugs we have today.
I think I said enough any feedback is welcome.and thanks everyone for allowing me to vent.
Sorry this was long and I made it as short as possible lol thank for letting me tell you my history. I think I might have typed more then you wanted to hear.
Any questions just ask...Ciao ! nj
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