can Anyone advise ?

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Meche
Regular Member


Date Joined Nov 2008
Total Posts : 41
   Posted 6/15/2009 2:48 PM (GMT -6)   
hi all,
 
I am getting bit worried now.  I have remitting/relapsing MS and been on Rebif since June last year and since then I have not had any symptoms or set backs.  for the past week or so I have been getting pins and needles on my lips, hands and legs but after an hour or so they go away.  i have been doing alot of walking lately which is probably a shock to my body LOL and it has been really warm, again another shock, but yest I started to get a constant pain in my knee cap on my left leg and tonight my whole left leg feels really numb, I am starting to freak out as when this happened the last time before i was dxs I woke up next morning and had rapid eye movement and couldnt walk as my whole body was numb.
 
I was away at an interview 2 weeks ago and didnt hear back but on Fri I got a call asking me to go back for 2nd interview tomoz, i dont think I have been particularly uptight about it, but do you think the way I feel could be due to this and because I have walked alot recently that maybe my body is telling me to slow down!!! 
 
Is this "normal" for sysmptoms to last a few days and too come and go, as i said above I have only ever experienced a relapse full on, no warning etc.  Tried to contact MS nurse today but she didnt get back to me.  this is all I need going for interview tomoz?
 
Any ideas/suggestions to maybe ease this etc would be greatly appreciated>
 
xxxxx
Meche xx


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 6/15/2009 5:57 PM (GMT -6)   
Hey Meche,
 
Wow I am sorry to hear this.  This does sound like it could be a small flare.  You need to try and get as much rest as you can.  Now stop laughing!  I am serious!!!  I know you have a full time job and kids and a husband, but for real, try to rest.  
 
Relapses can be very scary but it is a part of this infernal disease.  Take good good care and keep us posted.
 
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.


Meche
Regular Member


Date Joined Nov 2008
Total Posts : 41
   Posted 6/16/2009 2:58 AM (GMT -6)   
Thanks Gretchen,

It has calmed down this morning but still dont feel myself. Thankfully I am off work at the moment for a weeks hol, so ill get as much rest while kids are at school.

Thanks again at least I know its maybe just a small flare.
xx
Meche xx


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 6/16/2009 7:15 AM (GMT -6)   
Meche,
 
My flares were really obvious and huge and would lay me out before I started treatment.  Now they are very mild.  They might be a week or so of spasticity or a bit more of my vertigo.  It can be hard to tell if you are flaring.  Just try and rest.  The good news is you have been very stable and without progression for a while!  That is wonderful!  Think postive.  Try to enjoy life and those quiet mornings without kids!  wink
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.


RickyC
New Member


Date Joined Jun 2009
Total Posts : 2
   Posted 6/17/2009 11:05 AM (GMT -6)   
I understand your feeling very well. I was diagnosed 5 years ago and have been on Rebif ever since. I turn 53 this month. The Rebif is not the problem so do not worry about that. I have the same problems, as far as the pins and needles I have found 3 things that help me as I get that feeling mostly in the evening. Ice or a small ice pack helps, a glass of wine helps and the doc prescribed pain pills (that I do not like to use) help, all dull the system a little. Unfortunately there is not a real itch or pain, the feeling is generated by your nerves and brain function so please do not use an itch cream as it will do nothing but fustrate you.  As far as your knee, I truly hope it is not a cartilage problem that causes the pain. Please do a little experement for your self. Walk slowly to see if the knee pain subsides or just disapears, the walk faster. If the pain returns you have over worked your knee so you need to find an alternate exercize to use on different days. If the pain is their all of the time you may need to have a steroid injection as I had to have done. The injection is painless and the effect (at least for me) was great. Hope this will help and hang in there! I am a very independent person and have had to really make some major life adjustments but, my attitude is "I AM NOT GOING TO LET MS BEAT ME!"  Take Care and God Bless, RC

popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 6/17/2009 4:53 PM (GMT -6)   
Meche,

For the last 50 years I have mostly had little flares that come & go. Sometimes they go for ever smilewinkgrin sometimes they go for a few months or up to 15 years :-) and sometimes they stay sad

I have also had the knee pain (in my gooder leg which I use to get me up & down the stairs in my house). It panicked me too, a lot, but it also comes & goes. Hot water really works for me.

Hang in there & Gretchen has given you good advice.
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.
Plant your own garden & decorate your own soul instead of waiting for someone to bring you flowers.
Know that you are strong, worthy and can learn & endure.


Meche
Regular Member


Date Joined Nov 2008
Total Posts : 41
   Posted 6/18/2009 2:58 PM (GMT -6)   
Hi all
 
Thanks to everyone for the advise.
 
Ricky I tried the "test" and when I walk slow the pain eases but when I walk faster its really sore. I tried the ice pack and it helped alot especially at night time.
 
I like the attitude you have as its very much the same is mine which is "I have MS, MS does not have me" again like you I am very independent and most days I am upbeat and get on with it, but it was frightening, I suppose we need to take the good with the bad eh!!
 
Thanks Popsie for the advise too, glad too know i am not alone and that it will come and go.
 
Gretchen the long lie didnt work, still had to get kids off to school and relaxing that went out the window with all their after school activities lol.  On a brighter note both my kids are going to a prizegiving ceremony tomoz at school as they have both won an award for good achievement so moments like that keep me going and ill be in the front row proud mum, although think my son who is 9 will be cringing lol
 
Take care all and thanks again for the support
xxxx
Meche xx


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 6/18/2009 4:35 PM (GMT -6)   
Meche!!
 
I am so happy for you!!  There is nothing more satisfying than seeing your children do well!!!  Good for you!!!  You are a good mum and it is being recognized through your babies.  I am proud of and for you!!!!  Tell your son to get over it!!!  This is the stuff mums live for!!!!!!  Good job!
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 6/18/2009 5:19 PM (GMT -6)   
Congrats Meche,

My daughter was in high school when I told her I had MS (after not telling any of the family for 7 years) & she told me later she would rather have not known.

When she was at uni she had some poetry published and I was devasted when I read of her heartbreak at hearing me cry in the night cry I had even moved downstairs in the house to try to ensure I would not disturb anyone.

We had difficult times when she was a teenager. Now we are best friends and she provides wonderful support, laughter & encouragement.

Your kids love & appreciate all you do though they do not always know how to do it. Go and enjoy every minute of their special day.

turn
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.
Plant your own garden & decorate your own soul instead of waiting for someone to bring you flowers.
Know that you are strong, worthy and can learn & endure.


Bteeters
New Member


Date Joined Jun 2009
Total Posts : 8
   Posted 6/19/2009 5:49 AM (GMT -6)   
I was diagnosed in 2/08 with Acute MS and have just began to walk again 2 months ago with physical therapy.  When I began PT I felt I was coming out of remission again and have recently experienced this again after a Tasabri treatment.  After speaking with my MS Case Mgr. and the infusion clinic, I was told to lay down and rest for a few days.  I was just becoming too tired and getting too hot.  I was even having the numbness & pain again in my body.  I stayed out of the heat and just rested, not necessarily in the bed, and I am beginning to feel better.  I feel you should speak with your Dr. or nurse as we all know MS IS DIFFERENT WITH EVERYONE!  I hope you will find a little bit of comfort from this
Prayers and Blessings

Meche
Regular Member


Date Joined Nov 2008
Total Posts : 41
   Posted 6/21/2009 3:06 PM (GMT -6)   
Thanks all again for the kind words and prayers,

The prize giving was great my Son got a gold award for getting 12 certificates through the school year and my daughter who is in her first year of school got 2 awards 1 for best contributing student in her class and the other for being the chair person in her class at the health comittee. I really was very proud of them.

Gretchen - I was out with the camera and down the aisles LOL and made them keep their uniform on when they got home so I could get loads more of them, I know they love it really.

Both my kids know i have MS and i was worried how to tell them and my MS nurse gave me a book to read to them called "my mum has MS" it helped them to understand it a bit more. Also I self inject but when I rotate my injection site to the back near my hip I put it in the auto injector and my son will give me the jag, which I am glad he can do as it means if i do have another severe relapse and get numb hands and no one else is around he can inject me.

Bteeters - I am glad your on the mend.
Popsie - I am glad I told the kids early on as I suppose they adapt well at that age, although they may not understand fully, they will in time and I have a great partner and family who are all very supportive so I am very blessed.

Once again thank you all for your kind words and encouragement

xxxx
Meche xx

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