Multiple Sclerosis (MS) Support Group

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smathie2 12/28/2009

I am in the middle of my 5th relapse. At the beginning of December I lost most of the feeling on my left side, lost all of the hearing in my left ear, and I was always cold on my left side even though everyone else said my left side was hot. On the 26 my entire body became very shaky, similar to how it does when I've drank A LOT of coffee (I'm not a coffee drinker at all), and everything started tasting bad. Nothing I eat tastes good at all and cooking is my favourite thing! Yesterday I started walking funny. I'm still able to walk (I understand what not being able to walk is like... I was in a wheelchair for a week and used a walker for over a month) and I bike work work daily, but my body is weird.

IV steroids don't do anything for me at all. I've tried two courses of steroids and nothing improved at all. I've also been on oral steroids tapered for over a month and they have done nothing as well.

I am making an appointment with my Neuro as soon as possible. He's gone until the 4th of January and I'm still able to do everything I need to do.

Before I go in and see him, I want to know if Betaseron working for me. I started September 2nd. I was almost completely normal until December when I just keep getting worse.

I have researched LDN a bit, but I was wondering if I should research other drugs? I really don't know what to do but I don't think Betaseron is working for me.

deleted_user 12/28/2009

First, I am so sorry you are going through all of this. I am wondering how long ago you were dxd, and if there are other medical things going on. Were the issues in December new? Sometimes there are things that are from damage that has been done prior to starting the meds.

I did have some flares soon after starting my meds, but no new lesions. Have you had an MRI to determine if there is something new they can see?

Is there a reason you are leaning towards LDN? Not that it is so much an odd choice, just wondering.

smathie2 12/28/2009

I first had symptoms at the beginning of last July, but the end of July I was hospitalized until the very end of August. I got sick again about 2nd or 3rd of Sepetember and lost all of my sight.

I thought Betaseron was working until this past month when I started getting worse. I thought I was just having symptoms reappear because I was stressed out but from what I read, it shouldn't last this long and I've been getting steadily worse. From my MRI in August to my MRI in November, almost all of my symptoms left as well as almost all of the plaques left as well. BUT I did form several new plaques in November. I'm not schedules to go for another MRI until March so I don't know if anything has changed.

I'm thinking LDN since its so much cheaper and there are no side effects plus it also works for Crohn's disease, which betaseron doesn't. I want to to to Korea and pay off a lot of my student loans before I decide what to do about my Masters. I am really open to any drugs that work though. Either way I want to be able to research the drug before I go in to see the my neurologist.

LarryLDN 12/28/2009

did you start LDN yet? :)

smathie2 12/28/2009

I haven't started. I'm not even sure that it is available to me or in Canada for that matter. My neurologist' office isn't open until the 4th of January

I should also mention that my throat feels swollen. It feels like something is stuck in my throat.

deleted_user 12/28/2009

If you continue to get worse, I would suggest going in through the ER. Sounds like you have alot going on. Larry has a great site on LDN. All of the CRAB drugs have websites, and if you pull them up, we have many thoughts on all the drugs on different threads here. As to the cost, all of the drugs have assitance programs. I don't know for sure how it works in Canada, but here if you have no insurance, the co-pay for Rebif is $50 per month.

If yoou really want good info on LDN, Larry is the person to talk to. If you are interseted in specific drugs, put them up as threds and I am sure you will get help.

The CRAB drugs will not really help much with "symptoms." That is where LDN is more effective, from what I understand, The CRABs are aimed at slowly the formation of new lesions, at the progression of the disease. However, because MS is cummulative, the damage does not always hit you in every way at the time it happens.

You also might want to look into the areas where you have lesions, and the effective rate for each drug...I have had no increase in the brain for a good while, and that is what they say Rebif can do. Spinal, on the other hand, not so sure.

I hoipe this has been a little helpful...shout out to LarryLDN.

LarryLDN 12/28/2009

LDN doesn't help with symptoms, LDN helps the immune system Work and Fix, if that happens, then the SX Naturally GO away.

and, yes, it's available in Canada, Smith's in Toronto is the major compounder up there

deleted_user 12/28/2009

None of the betaserons worked for me, which left me w the choice of LDN n Tysabri. Everyone claims LDN is doin them wonders, but, not so sure its the best thing. Tysabri is alittle scary, but plz, dont rule it out. My re-lapse now has been goin on 7mos, n Ive tried everything. Ive subscribed 2 the LDN yahoo group n u can find lots of info there, but, not all was positive 4 me to say absolutely yes. Ur neuro may not b willing 2 presribe it either. Someone will, but make sure u make the right decision 4 u!!

Good Luck!!

deleted_user 12/28/2009

Also, LDN, stops the progression as they say but doesnt change ur syptoms....plz do research b4 making that decision.

deleted_user 12/31/2009

Well, LDN has stopped my progression & helped some symptoms as well. Only trouble that I had was sleep disturbance during the first week or so. Think that LDN attracted me because of few side effects & no needles.

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