Wife of a husband with M S looking for a answer .

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Wife of a husband with M S looking for a answer .

Postby Bubba » Mon Mar 14, 2011 6:12 pm

My husband and I found out he has M S two years ago. He has been on rebif and he had these spells just every 3 to 4 months apart but he had a bad one yesterday and what happens is he starts with very bad muscle cramps and spikes a fever and so he is shaken very bad and makes no scence when he is telling me something. I called my cousin who is on rebif due to her having been told in 2005 she has M S for advice. I told her he just had a hot shower because he was so cold but to the touch he was very hot. She said that was going to not help him because he needed to cool down his body and to take a not cold but cool shower even if he is cold because he needs to bring down his body core fever . Today he woke up ok and had a normal day. Then tonight he called me on my cell because I was downstairs and he was upstairs and I heard in his voice something was wrong. He said he just 45 min. ago took his rebif shot and then another bad spell with very cold,but his body was hot and cramps and whole body hurting. He said he was not going to take anymore rebif . Alice said thats just the M S. ANSWERS ANYBODY
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Postby patientx » Mon Mar 14, 2011 7:04 pm

Edited:
I must be dense - I didn't realize it was Bubba's wife writing.

Lyon's advice is good -definitely let the neuro know.

I do agree that the hot shower was probably not a good idea - in general, heat is not the friend of someone with MS.
Last edited by patientx on Mon Mar 14, 2011 7:42 pm, edited 1 time in total.
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Postby lyndacarol » Mon Mar 14, 2011 7:12 pm

Dear Bubba's wife – I am so sorry to hear that you two are going through this difficult time. There are no definite answers for any of us yet; each member of this website will probably have unique recommendations – we all have our own ideas.

Bubba's problem may be related to the Rebif, or it may be something else entirely. Patience and understanding are probably the best tools we have for dealing with these times. Most of us use "trial and error" to find what works best for us.However, for many people with MS hot temperatures (baths, showers, or even weather) can worsen symptoms temporarily.

I have chosen not to take any of the injectable MS drugs – I tried three of them over the years and saw no benefit, so I stopped. I do not feel I have gotten any worse because of stopping. On the contrary, the drug affected me with shivering, chills, and other problems.

I would encourage you to keep a journal of all that happens so that it can be mentioned at the next doctor's appointment. If things are not written down, most of us will forget the details.

My own suspicion is that diet (especially one with lots of sugar, bread, potatoes, soda pop, artificial sweeteners, even beer) brings on MS and makes it worse. For that reason, I would encourage you to think back and also write down in your journal the foods your husband ate in the day or two before this flareup.

We admire your attempt to help your husband; we know that it is not easy for the healthy half of a couple to be with the MS half, when there is no way yet to cure the MS. I personally believe that the answer will be coming soon – but it is so hard to be patient.

In the meantime, we welcome you and any questions you have.
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Postby Lyon » Mon Mar 14, 2011 7:35 pm

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Last edited by Lyon on Fri Jun 24, 2011 7:22 pm, edited 1 time in total.
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Postby Bubba » Wed Mar 16, 2011 4:41 pm

Thanks for the responses... Bob, I did end up going to the local fire dept. (1/2 mile down the road) after my blood pressure hit 167/106 with a resting pulse of 186.
I know my "epissodes" must have scared the sh!t out of the wife. I hate for her to see me that way. At anyrate, things are back to normal today! :D
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Postby Lyon » Wed Mar 16, 2011 4:44 pm

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Last edited by Lyon on Fri Jun 24, 2011 7:21 pm, edited 1 time in total.
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Postby Bubba » Thu Mar 17, 2011 6:57 pm

Lyon wrote:So what do you think was going on......I'm glad to hear you are this good at this point anyway. Just looking at a map of Pinecrest (Google Maps). Cool looking area!


LOL.... Yeah, it used to be kewl, very rural. However, a new community sprang up out here and their 5000 swanky houses has ruined our way of life and our small town. Now "they" bitch about the traffic ect.... and there wasnt a problem before they all moved in, makes me wanna puke.....
Anyrate, I firmly believe it was the rebif. I knocked it down to 22mgr(?) to see if anything happens with that!
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Postby Lyon » Thu Mar 17, 2011 7:06 pm

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Last edited by Lyon on Fri Jun 24, 2011 7:20 pm, edited 1 time in total.
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Postby Loobie » Fri Mar 18, 2011 5:50 am

Sounds totally like interferon flu to me Bubs.
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Postby Wonderfulworld » Sat Mar 19, 2011 1:26 pm

I agree with Loobie, sounds like Rebif side effects. What you are describing for Bubba sounds exactly how I was when the Rebif Flu reaction hit me (nearly every injection). If I woke up during the reaction I was hardly able to move, speak, I would have had fever, the shivers....it was really awful and it really shocked my husband to see me during it.

I was on it for 4 years, went through hell with fevers and eventual destruction of most of my white cell count and all the ensuing infections from that too. I continued to have relapses, flu-like reactions the night of every injection, and infections every 4-6 weeks in the last year on it due to my cell count dropping. 8O It was awful. The only way I got through it was to always take my injection at night before bed and to dose up on Ibuprofen at the same time, and have 2 handy to take in the middle of the night if I woke with chills.

Incidentally I was on 22mg, then on 44mg, then I was reduced back down to 22mg but the problems with side effects did not reduce for me. Only thing for me was to switch to Copaxone.
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Concussus Resurgo
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RR-MS dx 1998 and Coeliac dx 2003
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Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.
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Postby Bubba » Sat Mar 19, 2011 5:59 pm

So far (knock on wood) I have had no more problems. I did reduce it to 22 though.
The reason I asume it was the Rebif is because my problem each time was about 45 minutes after injecting. Initially, my first response was to never inject again, I was miserable; but I will continue on the 22 till I see the Neuro again in 2 weeks. Thanks Yall for all the responses...
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