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Thread: Who here has MS?

  1. #41
    That is absolutely wonderful, Khaleeka. When you're familiar with the meds, it really does make sense that you'd be more of an expert than the doctor in so many respects.

  2. #42
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    That is great, I am so happy for you Khaleeka. Thank you for sharing, makes me feel better about it now too.

  3. #43
    Hello, I am new to the site. I found it by researching pain pump information. I was wondering if anyone who has MS on here has a pump? I had a 3 level spinal fusion in 2008 after figuring out at some point I had broken my back. The surgery was enormous and I was turned down by nearly a dozen doctors because I had MS. I clearly needed the surgery but those 2 letters just seemed to scare them to death. The surgery sadly didn't help for long and due to the neurosurgeon using the anterior apporoach I have been told that they cannot remove any of the hardware due to extremely high paralysis odds. I have continuous issues with my MS, nothing has really ever helped manage the symptoms. I started having symptoms in my teens and because I thought it was nothing didn't ever mention them to anyone. I finally stopped ingnoring them in 2003 cause they were not leaving me alone and was officially diagnosed. That same year my younger brother was diagnosed with young onset parkinsons. I was 27 at the time, he was 24. I have been on very high doses of pretty much every pain med since then. I have major pain from the MS and then even worse paired with the failed fusion. I feel like the high doses of oxycontin I am on is going to cause major damage to my liver and kidneys and would like to keep that from happening! I would love any info/advice anyone could share. I meet with my doctor next Wednesday to discuss the pain pump with him. Thanks and God Bless!!

  4. #44
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    Wow JeniSue, so sorry you are having so many problems. I can't speak to much about the pain pump, but I know several on here have them. Not sure about MS and pain pump though. My husband broke his back in 2000, was fused from T10 thru T12 everything healed nicely and then it was in 2005 he got MS. Had one attack and wham...but still his nerve pain is controlled with Lyrica. Thats the bad thing about any meds they all have such adverse effects like damaging the kidneys or liver or other valuable organs. I would recommend you search pain pumps and talk with others here who have them and see what they say, maybe having that information would help in your decision. I wish you luck I know you are facing a tough situation. Please come back and let us know how things are going.

  5. #45
    Hi jenisue, and welcome to the forum. MS certainly complicates things...doctors have a hard time determining which symptoms are caused by MS, and which by other spine and cord issues, as MS tends to go hand-in-glove with other neurological and structural problems. People with MS are thought by some neurologists to be poor surgical risks, as demyelination complicates recovery and some (not all) neuros think there might be a link between anesthesia and MS exacerbations. So...we're pretty much on our own and subject to a variety of conflicting professional opinions. It can really be crazy-making. I wish you the best in your discussions with your doctor on Wednesday and hope that together you will come up with a treatment plan well tailored for you.

  6. #46
    I never heard of a link between anaesthesia and MS exacerbations, but I see how it's possible...I've heard of people with MS having exacerbations after surgery--just never made the connection before.

    I think that surgeons need to evaluate the pros and cons, as to assume that the person is not a candidate just because of MS.

  7. #47
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    I have never heard that link either. David has had two surgeries since MS and I do know he was alot harder to wake up and come around to where he was making sense. No exacerbations afterwards either.

  8. #48
    I've had two surgeries with exacerbations afterwards, but since they were C-Sections, there is obviously no way to tell if it was the birth or the anaesthesia that caused it.

  9. #49
    My initial symptoms appeared immediately on awakening from anesthesia after an emergency appendectomy - my left leg was jerking and that was the beginning of my left-sided weakness and foot drop. The neuro diagnosed transverse myelitis and as I continued to worsen throughout the year, it became apparent that TM had been the first symptom of MS; she said that anesthesia lowers the blood pressure sufficiently to lessen the circulation to the brain and cord, and if there are demyelinating lesions present, this can activate them. She said that not all neuros accept the connection between anesthesia and exacerbations, but in my case I believe it, because I had to have another surgery three years later and the MS progression really ramped up afterward. This doctor was trained at Mayo in Rochester and subsequently worked on-staff there for several years, so I tended to put a lot of weight on her opinions.

  10. #50
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    I would have to beleive its true too..especially since you both have had experiences. I wish as does everyone I understood this disease better. I really don't think David has had another execerbation since the onset in 2005. But you have to remember that one attack took everything. Everything has slowly gotten better but it has been a really really long road. He doesn't seem to fit into any of the MS categories which is whats even more confusing. I really don't know much about TM at all, but its weird that both of you have that as well. Can either of you tell me more about it. Which came first or do we really know? I always understood TM to be more of MS of the spine basically, meaning it affected the spinal cord more than anything else. All of Davids lesions where in his brain, basically his brain was a lesion, it about covered it completely.

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