did not expect this

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burko
New Member


Date Joined Mar 2009
Total Posts : 2
   Posted 3/11/2009 6:15 PM (GMT -7)   
I am a 41 year old male. I just received my MRI results.  Many lesions found.  My toes on both feet were numb for about 3 months.  I am (or was) a jogger every other day for the last 4 years, but then my left leg was starting to get lazy half way thru the run. Then the next day I woke up with numb feet and lower legs and a general dizzy feeling. I have very little visual problems, good strength, heat tolerant and generally not very tired.  I went thru an episode like this 8 1/2 years ago the day after returning home from a trip. I went thru the CT, MRI and lumbar puncture and when all the testing was complete I was left with a "virus caused this".  I never did quite fully believe this explanation, but I have to admit that after nearly 9 years without the slightest indication of a pending problem I thought maybe they were right.  I am now on week 5 of riding this rollercoaster of revolving symptoms.  I have head pressure (inflammation?) off and on during the day and then at night I typically feel somewhat better but the numbness always remains to some degree.  Has anyone experienced such a long duration between episodes?  I have a neuro appointment on the horizon.

dianna30
Regular Member


Date Joined Mar 2009
Total Posts : 90
   Posted 3/11/2009 7:36 PM (GMT -7)   

Burko,

I cannot personally relate with 8 years between relapses, but MS affects everyone differently and the disease progresses at a different rate from person to person.  I do have pressure in my head which is often followed by headaches.  The pressure feels like my head is severely squeezed.  I have read that this is often caused by vascular inflammation in the head.  You can find it if you look up migraines. 

The good news is that if you do have MS, it sounds like you have a very slowly progressive case.  You should make a list of questions to ask your Neuro, and make sure you take notes at your appointment.  This should make it easier for you to understand exactly what is going on.  Also make sure to explain your most troublesome symptoms, because many symptoms can be treated.  They won't disappear, but they might be easier to live with.


Be joyful in hope, patient in affliction, faithful in prayer (Romans 12:12).


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 3/11/2009 8:56 PM (GMT -7)   

Dianna has pretty much hit the nail on the head with this one.  While no one wants to hear MS, it is good news that you are nearly 9 years between flares.  Keep exercising absolutely as much as possible.  Aerobic exercise is very good for reducing inflammation all over your body. 

I am glad to see you have found us and I hope you stay and join the group.  We will try to answer all your questions and we will be here if you need us for support as well.

Have you discussed progression therapies with your neuro yet? 


Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


burko
New Member


Date Joined Mar 2009
Total Posts : 2
   Posted 3/12/2009 10:26 AM (GMT -7)   
I have no knowledge of what progression therapies are.  Would you please elaborate. Thanks so much.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 3/12/2009 5:56 PM (GMT -7)   

There are four main medications used in an attempt to slow down the progression of MS.  They are Avonex, Rebif, Betaseron, and Copaxone. 

These medications are an option if you get a firm diagnosis of MS.  The first three are interferons.  They are injected anywhere from once a week to every other day. The main side effect is flu like symptoms for the next 5 to seven hours following the injection.  Most people deal with this by injecting at night about an hour after taking ibuprofin.  Copaxone is not an interferon so it has no flu like reactions.  It has local pain and swelling.  It is injected daily.  Each of these meds has about the same efficacy.  They are capable of slowing down the disease about 40 percent or so. 

Your neuro will discuss these med options with you when you get a final and firm diagnosis.  You don't have to take anything.  You can choose to deal with this disease through diet and lifestyle changes as some members here choose to do. 
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 3/24/2009 1:23 AM (GMT -7)   
Burko,

I had up to 20 years between episodes. First one at 10 years then, bad one at 15, mild one at 35, and at 45 was dxd SPMS. Had a full & happy life so its great to have long gaps. Good luck. wink wink
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.
Row, row, row your boat gently down the stream
Merrily , merrily, merrily, life is but a dream

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