Setting aside the issue of a cure, there are a few therapies that purport to take away one's symptoms. After all, symptoms are the essential problems of MS. Three therapies I can think of are Introvenous Hemoglobin, Stem Cell Replacement, and Blood Treatment/Transfusion. Which of these would you say is the most promising or are there any others?
Tank you, Forest Trowbridge
Hi ForestPrimeval Welcome to the MSAA Community ☺ Those are good questions. I haven't heard anything about the intravenous hemoglobin as that carries the blood through your system. The same with blood treatment's/transfusions. As that's not how MS works. Although l could be wrong. There have been promising results with HCST. Although it's my understanding that it's not really done in the US yet. We have a few topics on the subject, if you type in HCST in the search box you will find them☺
I hope you find everyone helpful, friendly and Informative, but most of all Supportive!
Jes🌠
~Helpful Hint~ If put an @ in front of person of who your addressing, they will be notified. IE @ jesmcd2 *With No Spaces*
@jesmcd2, My neurologist swears by IVIG infusion (intravenous immunoglobulin) therapy as an eventual suppression of all symptoms. Please check it out and advise.
Stem Cell therapy for MS, using one's own abdominal stem cells, is offered near San Diego, but it costs $10,000.00. It is not FDA approved and thus not covered by insurance.
Plasmapheresis blood transfusion is another process, the efficacy of which I am unsure.
ForestPrimeval
Plasmapheresis
nationalmssociety.org/Treat...
During my first relapse, at which time I was diagnosed at The Mayo Clinic, they mentioned that this would be the next treatment to try if the IV steroids didn't stop the exacerbation.
ForestPrimeval ... Love your screen name! I'm not in the medical field but I am a 17+ year M.S. survivor. I'm also a data analyst by trade. The background is just to tell you where my POV comes from.
I don't understand how anyone can state that intravenous hemoglobin or blood treatment/transfusions can CURE or 'suppress' M.S. symptoms. Maybe I misunderstood your words. The symptoms are due to scaring in the CNS and thus far there is no 'fix' for damaged myelin. (Although there is a lot of research in this area.) I could more buy the idea that these treatments can prevent worsening of the disease and perhaps new symptoms but not that they can fix existing problems. Neither of these is approved by the FDA for treatment of M.S. relapses that I can find, let alone for 'fixing' symptoms.
Believe me...if I thought any of these things could fix the symptoms that affect my QOL, I'd be first in line. But thus far, I haven't run across anything that will do this.
Note that I qualified my query with 'setting aside the notion of cure'. My concern is one of numbers; I.e. percentages, probabilities. of symptom relief. There is anecdotal evidence -- for whatever that is worth -- of symptom amelioration.
ForestPrimeval I did note your phrase 'setting aside the notion of cure' so was responding to this phrase instead: 'there are a few therapies that purport to take away one's symptoms'. Perhaps I'm not interpreting your meaning as to the words 'take away one's symptoms' which I interpret as 'get rid of' or 'remove'. Its also quite possible that I simply don't understand what you are asking.
The information I've seen about the use of intravenous hemoglobin or blood treatment/transfusions in M.S. patients seems to suggest that these 'treatment's are used off label during exacerbation when steroids fail. I haven't found anything online, even anecdotal, that suggests these are used to try and control or 'take away' day-to-day symptoms outside of a flare-up. I'm not opposed to off label use of drugs but always research them carefully. One of the meds I take is for both an FDA approved use and an off-label use. It works for me in both contexts.
Hello ForrestPrimeval, i'm Fancy1959 and I would like to welcome incredible chat room. When MS therapies can take away one's MS symptoms that therapy is essentially curing MS. At this point there is no cure for MS. There are some promising therapies that keep a patient's disability from progressing as quickly as it had in the past. In other words the time between MS flare-ups dramaticaaly slows down or stops altogether. The MS symptoms don't disappear however, it's just no new symptoms and no new disability appear. I hope this helps to explain what I know I know on the topic. We are glad you have come aboard. Your question was a good one it's just slightly ahead of its time. Take care and I look forward to talking to you soon. Until then please take care and remember that together we are stronger!
If it was legal in the US, I would have stem cell treatment. I haven't researched the others
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