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colee1979
Veteran Member


Date Joined Jul 2003
Total Posts : 667
   Posted 8/25/2006 1:06 PM (GMT -6)   
I was wondering...how far back can you relate yourself to having MS? My doctor told me that he belives I have had MS for at least 5 yrs. I think he is wrong,and probaly closer to 8-10 yrs. My first experience I had with MS(although at the time I had NO CLUE) was when I was about 17 yrs old. I had periods of 30-60 minutes where I had strob like flashings in my eyes(this happened just about every day for about one month,a doctor told me it was a strange type of migraine). When I was 19 I had the same strob like light flashes for about 6 monthes,once so bad I could not drive because it was like a sheet being pulled over my eyes. I am a couple weeks shy of 27 now. Just curious....
 
~Nichole~
 
 
 


Counting My Blessings
Regular Member


Date Joined Apr 2006
Total Posts : 53
   Posted 8/25/2006 2:13 PM (GMT -6)   
Hi Nichole. The theory is that I had my first episode when I was 16. I had shooting kind of like electrical shocks through my arms whenever I would bend my head touching my chin to my chest. My fingers would even spazm. It was weird and being a teenager, I thought it was kind of funny then. I didn't have another episode that I was aware of until I was 28. When I finally had to address it and they looked back at my chart, they figure that when I was 16 I had Lerhmittes Syndrome which is common I guess. So, anyway, there was a 12 year span between my first and second episode so that's a really good thing they tell me. I'm now 36 so I guess I've had MS for 20 years (Gee, I didn't realize how much of my life I've had it until just now!).

That's my story!

colee1979
Veteran Member


Date Joined Jul 2003
Total Posts : 667
   Posted 8/25/2006 2:18 PM (GMT -6)   
Thanks!! I believe my second experience/episode was when I was dx with UC. At the same time I was having uc related issues I was having major mistakes at work(becoming confused,etc) and after a stay in the hospital(because of my UC) I came home unable to walk without pain...this lasted about 4 monthes...I wrote it off as not responding well to Prenisone...but now realize it was the MS. So I think there was about a 3-4 yr gap between the first episode and the the second. and about a 3-4 yr gap between that episode and this most recent with the tingling/numbness.
 
~Nichole~
 
 
 


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 8/25/2006 2:45 PM (GMT -6)   

Nicole, what is UC?

I wonder if indeed that strobe-light thing wasn't indeed migraines..real common in younger women..you were 19? 

The zapping thing - L'hermittes -indeed is a common MS symptom.

I was diagnosed with MS in 1983, but after tracking my medical history, it was probably starting to show up in 1968 - 1969, when I was around 19-20, and had difficulty walking, and balance issues. I'd trip over things other people couldn't even see as obstacles; my then-boyfriend (now husband) and I would go hiking, and he'd have no difficulty on a trail and I'd be stumbling all over the place.  Probably was experiencing foot drop, too.  But I went for years (obviously!) just assuming I was clumsy, uncoordinated, and didn't pursue any sort of answer for it, other than that.

Wasn't until I started falling down a lot and thought I was having seizures, that I went to a neuro.  By the time I did that, he diagnosed MS upon my merely walking into his office (he could tell by my gait, and subsequent medical history and clinical signs.) He did do the evoked potentials and spinal tap (this was LONG before MRI's even existed) to confirm it, all of which took about 3 months, so it was a relatively short period of time from my first inquiry to diagnosis.

So what...38 years? 39 years? 


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 8/25/2006 3:08 PM (GMT -6)   
Hi Nicole,

This is a great question! Mike was dx at age 33, he's 39 now. His neuro said he's probably had it since around age 18 when the chronic fatigue started. He was told he had depression then, to exercise, eat better, etc. Took antidepressants for years and worked out in the gym, but never really got any relief from the fatigue. At age 24 or so he developed foot pain and was told that he had arthritis. Seemed like a logical dx at the time as he was working 12 hour days back then and was on his feet all day. By age 32 the pain was into his legs and back, started having trouble standing and walking. PCP sent him to a neuro who original said it might be peripheral neuropathy but after the MRI's, evoked potentials and spinal tap he was dx with MS.
 
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photogirl1358
Regular Member


Date Joined Apr 2006
Total Posts : 299
   Posted 8/26/2006 12:16 AM (GMT -6)   

Hi Nichole,

I was diagnosed in April this year and I am 31.  Two neurologists said they thought I had it for "quite a while" which I thought meant years.. but when I questioned mine she said "maybe a few months".  It was only a few months ago that I started feeling fatigued and had no other symptoms before that.

This leads me to a question...anyone?  she said I had "new" and "old" lesions.. I'm assuming the old ones could be just a few months old then and just caused no symptoms?

I was sorry to hear about your diagnosis, but I'm glad you found this forum.. it's great!

Shar

 

 

 


colee1979
Veteran Member


Date Joined Jul 2003
Total Posts : 667
   Posted 8/27/2006 12:11 PM (GMT -6)   
Uppitycats~UC is Ulcerative Colitis. I was dx with that about one year after I had my daughter. Moderate to severe,left side(of my colon). I have had 6 major flares with that since being dx 4yrs ago. I am prone to migraines anyhow..but the strob like light flashes were just so unreal at the time...and since I have trouble with my peripheral vision(becoming to dizzy to drive at times).

I'm not sure about "old" lesions and "new" lesions...I'm still in the very new and not understanding anything stage...although I am trying very hard:)
 
~Nichole~
 
 
 


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 8/29/2006 7:20 PM (GMT -6)   
Hey Everyone

I've been thinking about this thread and trying to figure out this question for myself. I know i can see symptoms in myself at least 6 yrs ago, but of course never tied anything together and saw each thing as an individual incident and not as any kind of whole picture. Now i have a question. I THINK maybe something showed up about 12 yrs ago with the birth of my first child. I clearly remember my legs getting numb in the hosp, but only when i sat up in the hosp bed. It was more like a pressure thing. I wrote it off to being related to the epidural and c-section (something of a traumatic birth). However; as i recall that time in my life i can remember it happening when i sat and with no pressure on my legs, after i came home. The whole time frame for this experience lasted only about 3 months, but then nothing along the lines of numbness until April of this year. Any opinions on this since it seems to have been at least somewhat related to pressure?? I realize the whole event could be residual from the med i received at the hosp, but now i'm wondering since it lasted so long. Thanks for any input!

rhonda

Post Edited (rhondab) : 8/29/2006 8:57:14 PM (GMT-6)


Shashi
Regular Member


Date Joined Jul 2006
Total Posts : 156
   Posted 8/31/2006 10:18 AM (GMT -6)   
I haven't been diagnosed yet, but have been having symptoms for years. In fact, I found a post I had made on another message board back last year when I was wondering if I had MS. It wasn't until I had a serious flare this summer though when I put it all together. I somehow just shrugged off each of the symptoms I was having. I guess I thought everyone experienced those problems. It just never connected for me until I started having the muscle spasms, tremors, extreme fatigue, bladder and bowel problems, tinnitus, slurred speech, numbness and tingling, etc. that have almost ruined my summer and which have not let up yet though it's been four months already. Once I started researching my symptoms, that's when it clicked.
 
What really got my attention was when I read how MS symptoms are often worse after heat exposure. For months, I'd been trying to figure out why taking a hot bath left me so weak and with blurred vision, and why my last few summers left me feeling like I was running through neck deep mud. Now I know (even if the doctors don't yet.)

Looking back, my first clue should have been when I started having numbness in my hands back about ten years ago, but thought it was from carpal tunnel syndrome, though the doctor who did my nerve conduction study said that while I showed nerve problems in my hands, it was atypical for carpal tunnel.

Next, I remember when summer started in 2002 having unbelievable fatigue. I thought I was anemic at the time, but none of my blood tests showed anemia. I was so tired I could barely walk.

Summer of 2003, the same thing happened again. Mainly just fatigue and some hand numbness. Same for the summer of 2004 and 2005. Each time, my doctor tested me for thyroid problems and anemia, but all tests were negative. I also had symptoms of restless leg syndrome during this time.

Then this past winter, I had days when I was just exhausted. I also had a couple of episodes of blurred vision and a hot spot on my right thigh that was there on and off for several weeks. In additon, my bottom lip and my chin went numb on the right side last spring and have been that way ever since. I also noticed some cognitive problems last fall, especially slow word recall and memory problems.

I think about the story of the frog in the pot of water. If you put a frog into hot water, he will jump right out of the pot. But if you put him in a pot of cold water and gradually heat the water, he'll just sit there because he gets used to the slow increase of heat and doesn't jump out. I guess I just gradually got used to feeling bad, until it took one awful summer to wake me up!

Motown John
Regular Member


Date Joined Jun 2005
Total Posts : 475
   Posted 9/1/2006 1:45 PM (GMT -6)   
Friday p.m.
 
Hello Coolee:
 
 
Who cares about how long you have had symptomc?
 
My opimion.... just deal with the present...your current condirion.
 
There are several MS meds available....instead of wracing your brain about "how long have I had MS..."
 
My not-so-humble opinion...just deal with the present...
 
Great luck...John

colee1979
Veteran Member


Date Joined Jul 2003
Total Posts : 667
   Posted 9/1/2006 2:57 PM (GMT -6)   
John~
I can say for myself...that it matters a great deal,how long I have had symptoms. You are absoliutely right about dealing with the present...but for myself,to deal with the present I have to accept my past.

When I was dx with UC,I believe I was also having an MS attack(but at that time only believed it was from UC). I went monthes walking in pain,and nearly had my colon removed because of it...I actually thought my walking/dizziness etc etc came from my UC...and maybe it did. But looking back on it now....I am SOOO glad I didnt have my colon removed because I have MS...does that make sense? Like ok...my Colon is a mess...but it wasnt causing ALL of my problems,KWIM?

So thats where I stand...I need to accpet my past in order to focus on my future:-)
 
~Nichole~
 
 
 

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