SPMS, what would you do?

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SPMS, what would you do?

Postby beyondms » Mon Nov 27, 2006 6:49 pm

I have been off of Avonex since early July. I was one of the first patients to take it in North America but after a couple of episodes and nine years later, it is clear that Avonex is not doing much for me now.

My MS progressed very slowly, affecting my right leg. It is my only problem now but it is a big problem. I walk funny and I put huge strain on my back. I look like an old man walking up stairs. You get the picture.

I have been taking supplements forever. I am not sure they're helping. I also recently started 100 mg of doxycin, twice a day. We shall see if this does anything.

Last week, I visited my neurologist, one of the best in Canada. He told me he was really excited about adult stem cell therapy. This was news to me because he does not get "excited" about anything. He told me that where he thought it would take another five years to see trials, now he sees them in one or two years.

As for me, we talked about mitoxantrone, or the possibility of getting onto the BioMS trial. I told him about antibiotics and he was skeptical.

Any advice from those of you that are SPMS and found something, anything that works. What would you do? Please let me know.

thanks,

beyondms

P.S. Does physiotherapy work? What about acupuncture?
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Postby Chris55 » Mon Nov 27, 2006 8:41 pm

Hey BeyondMS--So sorry to hear of your new status. Just for information...my daughter is on an unconventional "natural" antibiotic treatment (diagnosed with severe strep infection). Her improvements have been remarkable! Took treatment for 5 1/2 months. Just finished and within days started having upper respiratory problems, seemed to catch every bug and the most bizzarre development..when she gets just a tiny little cut, in 24 hours it is full of pus.

Her supplements are based on the results of a urine sample. Hers just came back with continued strep infection as well as fungal infection. She will receive her new supplements tomorrow.

She is using the services of a "real" doctor from the Netherlands. He does not advertise and my daughter knew one of his patients...a young man who had terminal Hodgin's Disease and who has been cancer free for 2 years.

Anyway..it is not expensive and it DOES NO HARM!!! If you are interested, I will be more than happy to give you his contact information. (I am at home and the info is at work!)

Keep fighting!!! Chris
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Postby dignan » Mon Nov 27, 2006 9:27 pm

I'm not SP, but I thought I'd poke around a little to see what's out there on the horizon at least.

Since you're Canadian, sativex (cannabis spray) is approved for use by MS patients. If you're willing to go off the beaten path, and you sound like you are since you're taking doxy, maybe cannabis could be helpful for SPMS. I know it's not exactly the same thing, but this group in England is doing a trial of cannabis on disease progression for SP patients.

The other SPMS study that seems interesting (also in England, damnit!) is of lamotrigine, an anti-epilepsy drug that is a sodium-channel blocker. I just mention it as well because it is an approved drug and perhaps could be made available off-label if you don't like any of your other options.

The BioMS trial also sounds interesting. Are you seriously considering it? Does your neuro think it is promising?
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Postby Jaded » Tue Nov 28, 2006 3:14 am

Beyondms

I am very sorry to hear how bad things are for you.

I don't have spms, but my leg is affected by MS too. I have been trying various things and physio does work to strengten the weak areas and rebalance your body. It is something that you have to keep up though, as the weaknesses reccur if the exercises are stopped.

I wish you all the best in finding a suitable therapy.

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Re: SPMS, what would you do?

Postby NHE » Tue Nov 28, 2006 4:14 am

Chris55 wrote:Took treatment for 5 1/2 months. Just finished and within days started having upper respiratory problems, seemed to catch every bug and the most bizzarre development..when she gets just a tiny little cut, in 24 hours it is full of pus.

Are these new symptoms? How do these symptoms compare to what she experienced before starting the supplements regarding upper respiratory problems, infections, etc.?

NHE
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Postby Chris55 » Tue Nov 28, 2006 6:55 am

The upper respiratory problems (and allergies) have been with her since birth. The pus developing in any and all "wounds" no matter how small is new--and concerning. Clearly her body does not seem to have the proper level of infection fighting "stuff"!

None of her MS-related problems have returned but she has been off of the regimen only about 2 weeks and will restart today on a new formula.
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yes

Postby notasperfectasyou » Tue Nov 28, 2006 7:50 am

Our neuro took us from RR to SP over the course of last year. We had been on Avonex since the beginning, like you. We had a long visit and talked about all the CRAB's, Tysabri and Novantrone.

He suggested a change since Avonex was not working any longer and because we were no longer RR. He suggested we consider any of the other drugs individually (with the exception of Tysabri) and the combo treatment of Copaxone and Novantrone.

We come here, read a lot of old posts, wrote some new posts, spent weeks on Pubmed and the JI site and bought a very big book called Mcalpines Multiple Sclerosis. We went back to the neuro with a half dozen questions and decided to go with the combo treatment.

We've been through 3-4 boxes of Copaxone and 1 Novantrone treatment (2nd coming up this week). We now have balance, can walk the whole day without a cane, and danced 2 complete two-steps at our wedding 3 weeks ago. Significant improvement.

We very much prefer copaxone to avonex from the shot perspective too. Avonex was only once a week, but the thing hurt and washed us out for the entire following day. Copaxone is a little SubQ stick and we have the "bee sting" for about 4-5 minutes and that's it. No more side effects, good to go the next day. Life is WAY better with copaxone and novantrone, for us.

One other thought. Check out the posts by jimmylegs. She is a genius about supplements. consider B-12 (get the right kind) and ascorbic acid (again, get the right kind). There's more, but you really need to spend the time reading, but first I'd talk with your neuro about something new to replace avonex. good luck. napay
Last edited by notasperfectasyou on Fri Dec 08, 2006 7:56 am, edited 1 time in total.
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Postby Muu » Tue Nov 28, 2006 12:19 pm

Hello beyond ms.
I'm SPMS like you and my only affected area is the right leg too.
This over time caused me to feel lopsided and whilst the rest of my body was compensating for the weakness in the leg that caused all manner of knock on effect, strain on my back and knees, walking in a lopsided manner etc.
I had a course of physio which was great but one needs the self discipline to keep on. I should do more core strengthening exercises but I find that even simple stretches each day particularly for legs, feet, ankles and calves makes me feel so much better. Every 6 weeks I visit an osteopath who crunches me straight and he also administers acupuncture. Some people are sceptical but it works for me. I keep an eye on my weight as I feel that carrying around extra pounds is not going to help anyone with even the mildest mobility impairment. On good days my leg problems are hardly noticeable - or so I think! I do wear an orthosis for longer walking which avoids trips. I recommend that if you haven't already done so.
Over here in the UK there are NO DRUGS licensed for SPMS which is a little depressing to say the least. Luckily, I am on the Lamotrigine trial mentioned by Dignan. The drug is being tested as a sodium blocker for chanels and the idea is to investigate whether it can help to prevent further damage. So far so good. No further deterioration but then again my ms has been v mild and v slow and for all I know I may be on the placebo!
Muu
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Re: SPMS, what would you do?

Postby NHE » Tue Nov 28, 2006 1:18 pm

Chris55 wrote:The pus developing in any and all "wounds" no matter how small is new--and concerning. Clearly her body does not seem to have the proper level of infection fighting "stuff"!

Agreed, it sounds like the supplements may have knocked down her immune system quite a bit, either that or it's now over reacting. The reason I state that it could be over active is that I've read that patients on immuno suppressive therapy can have infections, cold, or flu but don't get the normal signs since their body is just not responding to it. It might be wise to go to a regular doctor and get some blood tests just to double check that everything is ok.

NHE
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Postby beyondms » Tue Nov 28, 2006 5:38 pm

Thak you all for your responses. Napay, I will discuss the combo treatment of Novantrone and Copaxone with my neurologist. I will also look into getting time release B12.

Muu, my back problems are horrible. My right leg is so weak that when I do the dishes, I crunch over. People are noticing my limp. My back is so wound up that I ask my wife to step on it at night and you can hear the cracks!

I have been bad with exercise. I am currently looking for employment, which is a full time job. As if I did not have enough to deal with. But I need to land a job soon to get on some sort of group insurance plan.

The fact that I am progressing concerns me but I remain hopeful. I wonder why the 100 mg of doxycin twice a day isn't doing anything.

It is becoming a struggle to walk and this isn't easy. I wonder how long will it be before they discover something significant for SPMS....

best,

beyondms
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Postby Chris55 » Tue Nov 28, 2006 7:01 pm

Actually, NHE, I think the supplements have helped her greatly!!! It was when she went off of them that she started having problems. Did nothing but improve--dramatically--while she was on them. Her latest urine test showed strep and fungal infections. She started her new supplements yesterday. It will be interesting to see what happens.

Another problem she has--in fact, her first "MS" symptom--is horrible itching on both arms. It started in one arm immediately following a Hepatitis injection. Over 8 years, it has gradually moved until it now covers both arms. Her neuro said it was from nerves misfiring; however, she gets blistered sores. One of the supplements she took during the first round completely did away with the itching. Once she finished that round, the itching returned.

I have suggested she go to a dermatologist and have the sores scraped/cultured. There is a fungal infection, resulting from inoculation, that can result in these kinds of sores. Will let you folks know the results if she decides to give this a try. If the supplements work, she won't give it another thought!

Her improvements have not only done away with paralysis/weakness, she has no more fatigue (almost TOO MUCH energy--her "old" self!), she also has no problem with heat anymore. I find these to improvements really wonderful for her!
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Postby gibbledygook » Wed Nov 29, 2006 11:11 am

I should up your dose to 200mg of doxicycline a day. Maybe statins too? Or LDN?
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Postby beyondms » Sun Dec 03, 2006 9:33 am

gibbledygook wrote:I should up your dose to 200mg of doxicycline a day. Maybe statins too? Or LDN?


gibbledygook,

I am up to 200 mg of doxicycline a day (2 x 100 mg) and I added slow release B12 twice a day (1,200 mg) to my other supplements. I wonder should I remain on doxicycline at least one year? Am I harming myself in the long run?

I have to also consider statins (Lipitor?) in my approach. I am skeptical on LDN.

thanks,

beyondms
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Postby CureOrBust » Mon Dec 04, 2006 12:25 am

beyondms wrote: I am skeptical on LDN.

Me too, but i take it as it is by definition such a low dose, and thereby such a low risk for something that many say has helped them.
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Postby gibbledygook » Mon Dec 04, 2006 3:46 am

I don't think taking doxicycline for a year or three does much harm. It is regularly prescribed for the long haul for things like acne. I haven't yet tried the lipitor but understand it can be heavy on the liver so would need monthly or regular liver function tests. These are very important! As I learned this year when I developed hepatitis from taking isoniazid and rifampicin. How about Vitamin D as well?
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