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Susiebuddy
Veteran Member


Date Joined Feb 2005
Total Posts : 1373
   Posted 11/29/2009 12:44 PM (GMT -6)   
Hello everyone


I am sort of an emotional mess right now... I am having symptoms but am not sure what to do.. I have Ulcerative Colitis that has been pretty much out of control over the last year so I finally went in October 22nd and had my first Remicade infusion... about 3 weeks later, I started noticing numbness in my right hand, arm and leg.. Now it has progressed and I'm also feeling numbness in my face on the right side and yesterday I noticed I was feeling numb in my left hand and forearm.... I have had over the years, off and on, another symptom that I feel is possibly related. I get this feeling that I am getting poked with a pin in my skin, mostly in my legs and feet. It is painful and feels almost electrical and pulsating for a few seconds each time.. With that sensation, my leg or foot will spasm with each pulse like it's reacting from the pain of being poked... VERY weird... I've been having that sensation a lot also lately..



I went in to my GP about 8 years ago with this pin-prick, spasming pain thing and they did test me for MS with an MRI and it came back ok, so they gave up at that point.. That's the only time I've ever been tested. The pin prick sensation does come and go, sometimes I'll have it pretty much daily for a while then it will go away for a few months... Also I have been becoming very clumsy lately, dropping things A LOT, and feeling a bit "off" like I'm not dizzy, but my equalibrium is off so I can lose my balance easily... Also I have NO memory, I forget everything.. to the point where my friends are constantly reminding me of stuff and it's drivng my husband crazy... lol... In my circle of freinds, it's a well known fact that I can't remember anything and we joke that I have CRS disease... (can't remember S---)... lol.. At least my friends understand my memory problem and work with me thank God... OH and also I can't tolerate heat AT ALL... Also I have noticed that when I'm blowdrying my hair, if I turn my head a certain way or look down, sometimes I get an electrical shock down my neck into my back.. like a "TWANG" or something like that..

I am curious if I did have MS, could the Remicade be bringing it out or making it worse, since it is an immuno suppressant drug.. and I know you aren't supposed to take it if you have MS... That is probably a question for my doctor, but I was wondering if the symptoms I am describing sound like MS....



Thanks for reading this :)

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3523
   Posted 11/29/2009 4:38 PM (GMT -6)   
Hey Susie,
 
I read your post and shuddered.  You need to contact a doctor immediately.  The fact that you have all this happening just after your first remicade infusion is very alarming.  It does seem that remicade can trigger MS responses in people who either have undiagnosed MS or are genetically predisposed to MS.  Your symptoms are very MS-ish.  The shock sensation (twang...good one!) on your neck is called L'hermittes.  It can be caused by back injuries and specific spinal diseases but it is also quite specific to MS. 
 
You should not have another remicade infusion until you have seen the doctor that treats your UC and you should see a neurologist asap.  You will want to get someone to order another MRI.  Hopefully you can have that MRI at the same facility as before so they can compare. 
 
Try to see a neurologist that specializes in MS.  You can call your local MS society for names.  By the way, many of us MSers also suffer from IBS, especially IBS-C.
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 11/29/2009 4:53 PM (GMT -6)   
Hi Susie,

I do hope you feel better soon. It sounds like you kinda already know the answer to your question =) Remicade can bring on neurological symptoms, although they say its rare. I don't like saying anyone's symptoms sound like MS because there are so many other things it could be. You do describe some symptoms that point in that direction though, and your doctor needs to be made aware if you have not done so already, especially prior to your next infusion.

Memory loss sucks, it often takes me a very long time to make posts, and often I go to the doctor and forget what I went for LOL. Your post was very detailed and well written, perhaps copy it and take it with you to your doctor?

Good luck and feel better!

Kimber
 


Susiebuddy
Veteran Member


Date Joined Feb 2005
Total Posts : 1373
   Posted 11/30/2009 2:44 PM (GMT -6)   
Well.. I went to my Doctor today and they have scheduled me for an MRI on Thursday at 11am.... So... it's without contrast.. I thought it had to be with contrast? Not sure... Anyhoo.... I should know something on Friday they said.. if they can see any lesions or not.. If not.. I don't know what I'll do.. the numbness is not bad, just annoying and it's in my entire right side of my face now.. just since yesterday.. weird...

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3523
   Posted 11/30/2009 7:20 PM (GMT -6)   
If you have any lesions, they show up fine without contrast.  If you are in an active flare, then the contrast crosses the blood/brain barrier and shows up very light in color.  I refuse contrast.  The idea of a foreign substance crosses the blood/brain barrier just creeps me out.  Contrast dye is not good stuff.  You are instructed to drink lots of water after and some people are seriously allergic/reactive to it.
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Susiebuddy
Veteran Member


Date Joined Feb 2005
Total Posts : 1373
   Posted 11/30/2009 9:37 PM (GMT -6)   
Thanks Gretchen1....

This is gonna sound sooo weird.. I Just talked with my girlfriend who is a nurse at our local hospital here.. She just told me that about 2 months ago she had the same thing as far as the numbness on the right side of her body.. I remember her mentioning it to me back then but she didn't let on to how scared she was... She said I described to her almost perfectly the same numbness feelings she had and is STILL getting over..Same areas on her body too... SO WEIRD..... SO.. I'm really thinking now.. what the heck?? Could it be a virus or something?? ANyhoo.. I have my MRI still on Thursday, and my nurse friend DID tell me that she didn't have some of the other symptoms that I have.. BUT.. I do feel a LITTLE more optomistic.... I've been worrying myself sick the last couple of days and been feeling nauseous and sour stomach because of my worrying... Today in the DR.s office I started having a panic attack...... I just going to hang on to any hope I can for now to keep from worrying myself into really becoming sick... I just thought it was strange that my good friend had the same thing as me for the numbness.. on the same side of her body too.... she got tested for MS, had the MRI and it came back fine... WEIRD...

Beau2006
Regular Member


Date Joined Apr 2006
Total Posts : 388
   Posted 12/1/2009 10:53 AM (GMT -6)   
Hi there and good morning - I am thinking that while you are there anyways, I would have the doctor include in your report to have and MRI on both of your neck and head, and to include in it a research to determine if you have any blocked or narrowed arteries or veins - that information would be very interesting and may prove to be beneficial with all of this new information coming out as a result of the latest inforamtion via W5 that was made public here almost two weeks ago..
 
I know that I sure would, and for anyone that is getting an MRI from this point on, I would be asking the doctor to have this included in the MRI exam, checking for blocked/narrow arteries and veins......
 
Gary

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3523
   Posted 12/1/2009 7:23 PM (GMT -6)   
Again, it is veins only and the imaging for that is very specific.  According to the article, specific imaging was needed for that such as ultrasound.  The video shows something that is clearly not MRI showing the narrowing.  The arteries here are not the concern. 
 
This sounds quite promising howerver, there are many many questions to be answered before we know if "this is the cure." 


Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.

Post Edited (Gretchen1) : 12/1/2009 6:58:47 PM (GMT-7)

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