Reply #29: Right here-- Dx'd in 2002

[Malikshah]

Male, 35 yrs of age. Started w/ numbness/weakness in right arm, left face, over span of 2 wks. Then waist down numbness-- didn't "walk funny" according to loved ones, but sure felt I did. Lost use of right hand for around 4 mos.
Put on prednisone and Avonex and that seemed to put it in remission Still don't have 100% in right hand. Had one relapse around 2004 Election (Optic neuritis)--personally blame it on stress, but go figure.
Right now in a relapse phase with the "hug" (numbness, heaviness in abdomen) Still on avonex, but planning on asking for prednisone at next Dr's visit.

Why the info? As other posts have mentioned-- this "Monster" as it's called by many on MS forums is still a mystery. Everyone has different symptoms at different times. Unfortunately, there are a number of "varieties" of MS. The most prevalent (85% IIRC) is Relapsing-Remitting. Other, more aggressive forms, are much more rare--5-10% of cases. The problem is that this is a condition that doesn't go away, but can and often progresses -- though the timing varies due to any number of factors...it's still all so hard to pin down. Thank goodness for the Interfuron treatments that came out in the 90s-- they've helped many from what I gather to slow the progression.

I'd been lax in the last year w/ the Avonex as I'd wanted my weekends back (it gives Flu-like symptoms for a day or so after injection-- my partner gives me the inter-muscular shot once a week)But now I'm as strict as can be, weekends be damned. The problem is that once its in remission in many cases, one can feel as if all is well. The symptoms appear, unfortunately, only after the damage to the nerve paths is done. Other treatments (Rebif, etc.) are every other day and sub-cutaneous. Tysabri's been on and off the market due to side effects.

A great site I've found is www.nmss.org . I used to go on the forums (hard to find the message boards on that site) but many of the posters tended to be a bit, shall we say, judgemental and/or red-state-like in their asides. On top of that, the conversations tended to be a bit Lillian Verner (i.e. MadTV gameshow parody) in tone and felt a tad out of place.

As a male, I still get strange looks as 2/3+ of those with MS are women.

Of course--there's the "You don't look sick" statements that I let blow over. Nothing like cognitive issues (words escape you) and occasional slurred speech during a relapse to remind you.

I am so sorry to hear about your niece, blm-- this does appear to be a severe case--my thoughts are with you all.


THNKS BTW-- for the info about the chronic condition forum! More info is always great and the environment here is soooo much more supportive and conducive than some message forums related to MS I've come across.