Question:
Anyone pre or post op with Multiple Sclerosis.

I had my initial consultation with one of the doctors I am interviewing. He made mention the fact that due to my MS that if I didn't have the surgery "soon" he would not do it. His reasoning is lack of mobility.I explained to him that I am pretty much in remission, on treatment and doing well. I am a nurse, work 40+ hours a week standing on my feet and have a new baby as well. Some how I think I can make a few trips around the hospital corrider without any problems. I also discussed with him post op pain management. I have had chronic pain due to the MS for the last 5 years. I do take excessive amounts of Muscle relaxers and mild narcotic pain killers on a every other day schedule. I am worried that I will not get enough for pain post op due to my high tolerance. anyone dealing with this as well?    — Kelly H. (posted on April 29, 2001)

April 29, 2001
Ironically, I was just diagnosed this week. I had surgery 7 months ago and my Doc told me it was a godsend that I had it done because I will deal with the MS so much better at at a healthier weight. I have lost 100lbs to date, and still going. Any questions e-mail me directly.- Hope this helps some
   — Lauren P.

April 29, 2001
I am just starting my journey down this road. I also have MS and the surgeon I saw told me that he thinks I would be a good candidate for surgery. I am pretty much confined to my scooter and am about 130 pounds overweight. I do not experience pain symptoms that you speak about but I am very limited in my movements. I am looking for a way to maneuver better and easier. I know this surgery will not cure my MS but am hoping to make life a lot easier for me. My surgeon agrees with me completely. Now I'm just deciding whether to go Open or Lap. I will speak with the Lap surgeon on June 18. I wish you the best whatever you decide. Good Luck!
   — Phyllis W.

April 29, 2001
Hi Kelly, I do not have MS, but I am a nurse like you and I have chronic back pain so I can agree and understand why you are concerned with post op pain. In the hospital, I requested an egg crate ,mattress which helped a lot, I also asked for a Morphine pump-never had pain. I was sent home with Lortab 7.5 mg liquid pain med. I never experienced enough post op pain to take it, but I do use it for my back pain and it helps. My csection was much worse than the open rny wls I had. Good luck with everything. I have lost 128 pounds and I had wls on 11/13/00. Hope this helps.
   — LISA K.

April 29, 2001
I have MS also. 10 years now, remitting/relapsing. I am still preop. In fact, my first meeting with the surgeon is tomorrow night 4/30/01. Yes I was wondering about the pain meds. I have fibromyalgia also. Not only do I have a high tolerance to pain meds, but after I take a certain type for an extended amount of time, I develop kind of an allergic reaction to them. Heart palps, nervousness, can't sleep, etc. So I am always having to try new pain meds to help the pain. I can't take Percocet, Darvocet, Demerol, Vicodin any longer and I am very Allergic to Codeine. I've never had to try morphine so I have no idea how I will react to it. And I find it hard to get the physicians to understand. I often feel they think I am just trying to get drugs from them. In fact, I can't even find a MS doc around my hometown who agrees that MS can give you severe ongoing pain. They treat you like its in your head. Ok I'll stop, thats another website topic. I walk very well. Only when I am having a flareup do I get very weak legs and shakey. And every once in awhile, one of my legs will jus give out and I'll fall. With my weight the way it is it makes my falls very dangerous. My PCP is glad for me that I am getting this surgery. I use the Avonex injections and they have really helped the flareups but tend to make the muscle stiffness a bit worse. I am anxious to see how the surgery will help the MS. I was getting ready to post and ask also if anyone here on the site has MS. Good luck to you. Email if you need to talk about the surgery or the MS. [email protected]
   — Karla K.

September 10, 2001
I'm being worked up for MS right now, but was diagnosed with Lupus 14 years ago and have had fibromyalgia even longer. I see a neurologist who is a pain management specialist. Luckily, prior to neurology she was an oncologist so is not "afraid" of narcotic drugs if used appropriately. I take Oxycontin 60mg every 8 hrs round the clock and 10mg of oxycodone for breakthrough pain every 4 hrs as needed. That, in addition to a dozen other meds. Anyway, what I would suggest is to see a pain management specialist prior to surgery. Generally they are anesthesiologists who no longer put people to sleep but practice pain management. Make sure the Dr you choose is board certified in pain management. By discussing this with the Dr in advance s/he can make recommendations to your surgeon. If you do get a PCA pump with morphine and you do not tolerate the morphine well, there are other drugs that can be given thru the pump such as fentanyl or dilaudid. Have a specialist on your side!.....Just a couple of cents from an ole' oncology nurse.
   — [Anonymous]