Follow up didn't go so good, and now need feedback from yall

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Follow up didn't go so good, and now need feedback from yall

Postby shucks » Mon May 23, 2011 8:45 pm

Hey guys, I know I'm a newbie, but I came here as a place to stay sane, and hope you guys can help steer me in the right direction.
I had a second opinion today at Duke from the really highly rated neurologist from the crappy one I saw in Charleston a few weeks ago. She tells me that My 4 lesions are all confined to my spine, and that, as a man with only spine lesions, I am at the highest probability for disability.
She then tell me that my disease has been around since 2004 when I had an onset of ON, but my Dr's all missed the further relapses, as all of them could be chalked up to muscle strains, and I was a full time attorney/part time construction worker for my dad at the time. She further said that she felt my disease is kind of benign, even though I have lost feeling in 2/3 of my body, and she tells "it could be worse", because half the people she sees cant walk, and I'm huge and really strong, though numb and tripping over my feet half the time. I guess I could count my blessings.
She told me I should pick from a CRAB drug and hope for the best, and if one didn't work, another might, but not to hope for more than a 1/3 reduction in relapses, if I haven't passed that point, and I f my disability got severe, I should look into tysabri or campath due to their side effects.

She told me she thinks I'm still RR, though she wasn't 100% sure, and the line is kind of blurry. She told me ccsvi was not worth spending money on, as she has had experiences with several patients, and no long term gains. She further told me that she thought hsct treatment was extreme and only justified, if ever, by having more rapid onset of disability than I have. She said the risk was just too high, even with folks having some recovery, the future risk was too high, AND CHEMO WAS A DRASTIC STEP. This meeting actually made me lean really heavily towards Hsct treatment, though I probably cant afford it. When the only answer is "it hasn't been approved yet, even with good results" it seems like a cop out to me, who is convinced I am on the verge of switching to a progressive form of the disease.
She seems really competent and as empathetic as a person who does't think what I have is really serious can be, but what do I do for me?

Please give me info on what drug to start on, and please convince me that hsct is not the answer, as I dont want to jump in over my head. Any other advice is also welcome, as I feel really lost right now, and want what is best for me in handling my disease.

Thanks so much for reading this long post, but It is really important for me to make the right decision, and I want as much info as I can get.

Thanks.

8O
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Postby Algis » Mon May 23, 2011 10:19 pm

I believe LDN (Low Dose Naltrexone) has dramatically slowed down the progress in my case. I am disabled and started after being already in a wheelchair, but on a long term use; I can feel I am different; kind of hard to explain.

Most of the lesions are in the spinal chord and none are active and no "new one" since my LDN intake...

It is dirt cheap and have no side effects (for me; some report sleep disturbances).

Hope this help.
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Postby carolsue » Mon May 23, 2011 10:28 pm

Sounds like that neuro doesn't sugar coat things, which is good. She said not to expect better than 1/3 reduction in relapses with a CRAB, probably because that's the mean response in trials. You might do better or worse than that. Maybe try one and see how it works for you. Keep hsct as your ace in the hole?

My advice is to make sure you're comfortable with whatever decision you make. Try not to rush. I know that I needed some time to digest all this information. Good luck and hang in there.
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Postby jimmylegs » Tue May 24, 2011 3:41 am

shucks sorry to hear you're not hearing good news from the docs.

quick question: have you read about, tested for, and dealt with all the known nutritional problems that exist in ms patients?
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Postby shucks » Tue May 24, 2011 4:33 am

Im working through those pages on nutrition now. please keep any advice coming. I am really perplexed about where to go. Go you guys that are not on the cheer-leading board like hsct as an option? I really appreciate all of you guys' advice on what medication to start on.
"A gun is a tool, Marian; no better or no worse than any other tool: an axe, a shovel or anything. A gun is as good or as bad as the man using it. Remember that." -- Shane

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Postby scorpion » Tue May 24, 2011 4:34 am

Sorry Shucks. I think you have some good information to work with and you will need to decide what treatment is best for you(knowing all the risks of course). I am at a place in my life where I understand the doctors comment about "it could be worse". Not to say MS does not suck, but after having a friend of mine who had two young kids develop pancreatic cancer and die within one week of diagnosis, I understand there are no guarantees of anything in this life. Like all of us you will adapt to MS and try to still live a full and productive life although many of may change what that means quite often. I hope you become a part of thisisms community and look around at the different forums for there seems to a lot of new and exciting treatments coming in the near future(hopefully).Have a good day Shucks!
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Postby jimmylegs » Tue May 24, 2011 5:10 am

hey shucks my signature links are a good start but as i don't have my own web site, the opinions of those pages are not exactly my own. you might be interested in my MS nutrition topic in the Regimens section. if that is the pages you mentioned you are working through, sorry :)

i am a real fence sitter when it comes to drugs and treatments so unfortunately i'm not really the one to ask. there are a lot of supplements out there that i can't even be bothered with. never say never though, i can't say what the future may hold. i have learned from ms, that even my strongest values can change pretty fast in a crisis :)
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Postby shucks » Tue May 24, 2011 11:40 am

I take 3 miltivitamins now a day that include 1200iu of vitamin d, 400% of calcium, and tons of other stuff. It is basically 4 of the one a day type things per day. I take too much advil, but other than that, I'm not on anything but some vitamins and a very low dose of antithyroid medicine I am on due to my thyroid being a little overactive.

I still have no idea of what drug regimen would be best to start on, and look forward to any advice. I am really interested in HSCT, but only as the studies I have read say that it works 80% of the time. It is scary though, as the side effects, both temporary and permanent, seem quite high.
These types of well reasoned discussions are exactly the types of discussions i need to be having, and here is as good a place as any.
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Postby shaight » Tue May 24, 2011 12:57 pm

hey shucks -

my .02 is that 80% hsct is better than the alternative.

i am new to this whole thing also. i am still going thru all the baseline testing and much to my chagrin i guess you could say i am starting avonex next week. i am not optimistic as i see the whole thing as a band-aid.

when the time comes i believe hsct will be the play for me.

i know money is an issue, but do not let that hold you back. there are ways to make that happen but you'll have to be creative.

best of luck!
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Postby bartman » Tue May 24, 2011 3:29 pm

shucks,
do IVIG, this helps remyelinate. then do minocycline + copaxone, then add the rest of the wheldon protocol. It's tough but it works! Did your top rated neurologist even suggest testing for infections? like lyme, cpn, mycoplasma, babesia, bartonella?
Lots of people are being misdiagnosed with MS. Infections can cause the exact same lesions that MS does. And if you are brave enough to do this treatment and able to find someone to prescribe it, you will get worse before you get better.
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Postby shucks » Tue May 24, 2011 4:53 pm

I got an order for all of the blood tests from her, but havent't gone through the process of giving the blood yet. She pretty much told me to pick a CRAB to start out on. I still feel like I'm progressing pretty quickly, but she says I'm still RR but accumulating disability. The reason have been looking into fundraising for hsct is that the accumulation of disease scares the crap out of me, and that 80% chance of no more progression sounds really good.

I guess I should start some sort of DMD while trying to spend month raising cash. I really want someone to show me that that stuff doesn't work so I can quit dreaming of it if it isnt worth it.
"A gun is a tool, Marian; no better or no worse than any other tool: an axe, a shovel or anything. A gun is as good or as bad as the man using it. Remember that." -- Shane

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Postby jimmylegs » Tue May 24, 2011 6:55 pm

heya, cool, which-all tests did you order?

sorry to hear you're having a rough time. hope you can get the blood work done soon - maybe we will find something that will help you in the short term.
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Postby bartman » Tue May 24, 2011 7:04 pm

If you pick one of the CRABs, pick Copaxone and add the minocycline. Take a look at the research. The combination is better than Copaxone alone. This also covers you for infection so you get two for the price of one. Be prepared for a herxheimer reaction, which is good because its an indication of an infection. My cousin was RRMS, started the mino+Copaxone and in 2 weeks was worse called his ms doctor and he said now he is SPMS when in fact it was just a herxheimer reaction. The MS doctor insisted he was worse do to an exacerbation when clearly it was the minocycline that caused the worsening, he wanted to keep him sick because he was wrong. Two years later he is much improved and positive for Lyme , Bartonella, and Babesia.

Just trying to help, but I wonder why the MS doctors completely ignore the science that the combo of minocycline + Copaxone is better than Copaxone alone and there are several studies to prove it. Ask your doctor.
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Postby tara97 » Sat May 28, 2011 10:19 pm

you have had spinal and optic lesions exclusively? have you been tested for devics aka neuromyelitis optica? I have had mostly spinal problems myself for the past 9 years. what ever you choose dont discard the nutritional factor. it is very important to include.
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Postby shucks » Sun May 29, 2011 7:02 am

I was tested for NMO and the antibody test was negative. The new neuro i saw said that my lesions didn't look like nmo lesions, which are different in look than MS lesions. She said, in true neuro fashion, that that doesnt rule it in or out, but lets stert treatment for MS anyway.
"A gun is a tool, Marian; no better or no worse than any other tool: an axe, a shovel or anything. A gun is as good or as bad as the man using it. Remember that." -- Shane

Who is John Galt?
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