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Joined: Jan 15, 2004 Posts: 88 Location: New Jersey, USA
Posted: Thu Jan 15, 2004 11:28 am Post subject: Help! Just diagnosed..Not sure what meds to take.
I was just diagnosed on the 8th of January. My doctor is giving me time to think about medicating and to chose which one I would like to use. I am having a real hard time with this. Can anyone tell me what they have taken, how they felt, any major changes or outcome they had, etc. This really sucks.
I have other issues too but I will try to cover one at a time.
Karen, so sorry to read of your recent dx. What a week it has been for you.
I would like to suggest you check out this site: www.braintalk.org and register on their MS 4 (Multiple Sclerosis 4) forum board. It is a very big MS community, filled with those who are newly dx, like yourself, as well as MSers who have been diagnosed for a long time and can relate to how you are feeling and answer any questions you have, including the question about which drug you should start.
I remember what it was like to be newly diagnosed, even though it has been quite a few years ago now. Since the forum board is so active, you will be able to get a lot of your questions answered very quickly. I hope you check it out and register there so that you have two informative sites at your disposal. _________________ Bonnie
Let me know how you like the site and when you have the opportunity tell me about your situation. I read a little of your journal, am I correct in saying your main problem right now is ON (Optic Neuritis) are the steroids helping you recover from the ON problems?
ON is usually the first sign that MS is the culprit. More of us then not, had at least one problem related to our optic nerve, before we were dx with MS. _________________ Bonnie
Joined: Jan 15, 2004 Posts: 88 Location: New Jersey, USA
Posted: Fri Jan 16, 2004 2:16 pm Post subject:
I did suffer from Optic Neuritis back in June. I had a total loss of site in my right eye. I did treat with Steroids and it is much better. I regained most of my site. (I would say 90%) ( I still notice it when its cloudy or in bright florescent lighting) My MRI's have shown lesions (I guess silent) that he said were not where they were supposed to be for MS (go figure). I had 2 spinal taps because the hospital forgot to do the bloodwork with the first one. the second one showed a slight elevation in white blood cells. This was 3 months after the onset of optic neuritis.
From August thru present I was having itching and tingling in my left hand but only in my ring and pinky finger outer palm and outer arm. Granted, I was supposed to have surgery on that shoulder last summer which was put off because of the eye and steroid treatment. So I think he was assuming it was from the shoulder. He told me to see my orthopedic doctor. In December I had an MRI of my neck. An older lesion was found. That was when he diagnosed it. thats my last 6 months in a nutshell.
I just checked out that site briefly. I will look at it more closely tonight when I am not at work.
Thanks again for responding. I am so overwhelmed. Maybe you can tell me a little about your situation?
It's not an easy job to decide which medicine to take...particularly since as I understand it it's equally hard to tell if it's actually working...
That said, I finally settled on Avonex because it was only once a week and I decided I'd eventually get over the side effects. That plus it has a low rate of neutralizing antibodies.
I'm into week 8 on Avonex. I find the actual injection to be relatively easy and painless. Hardest part for me is pushing down the plunger to get the meds injected.
The needle is really sharp and sort of actually slides in. The side effects have not been as bad as I anticipated either, altho for sure I have them.
Chills and fever during the night of the injection and a tired, "hit by a truck" feeling for most of the next day.
I stick with their recommendations of pain medicine before and after injecting and keep it beside my bed at night so it's handy when I wake up.
It seems to keep the side effects in check.
I love replying to myself I decided this was a thread for this info.
I was so happy to see the article about alpha lipoic acid on this site.
About 2-3 weeks ago my pharmacist recommended ALA (300 mg 3x day) for the numbness, burning, and MS hug in my left leg. Guess what, it seems to be working, maybe even helping the spasticity.
I was very skeptical but decided to give it a go since I want to wait as long as possible before starting neurontin and baclofen. (I'm actually only doing 200 mg 3x day). Less is better if it works in my book....
I did only a tinsy bit of research on it and found that they apparently use ALA in Germany rather routinely for diabetic neuropathy
I'd love to hear if others have or decide to try it and if it seems to impact their MS symptoms.
Posted: Fri Feb 11, 2005 7:38 pm Post subject: Help! Just diagnosed..Not sure what meds to take.
Hi Karen
I can relate to your dilema. I've recently been diagnosed as well and am pretty much reeling from the whole thing. I just don't know what to do and my impression of the specialist at the MS clinic I've been to is basically "Well, do what you want to do because nothing really works anyway. You want this drug, you want that, sure, no problem and now move along because I have five-thousand other patients to see." The clinic in the city I live in serves more than 6000 people with MS...and one doctor, so he's pretty busy. I don't find the clinic very accessible but I do have a good relationship with my GP and she's prescribed me a couple of things. I do some research, bring her the info and she writes the prescription...which is good, but a little weird since I have absolutely no idea what I'm doing really.
I had a MRI in the summer when I was diagnosed and when I went to the clinic (my only visit) the specialist didn't have the MRI with him but thought I had a "half dozen or so" lesions. I had a follow-up appointment with an eye specialist (this is the guy who originally said MS - I had double vision suddenly that lasted a few weeks which led me to this eye specialist). This eye doctor whips out my MRI, throws it up on a light screen and shows me the two lesions I have.
The MS specialist wanted to start me on Avonex, but I resisted and said I wanted to think about it, do some research, etc. I didn't know how long it was going to take me to get into the clinic so before I even saw the specialist I had done some research and read good things about statin drugs and my GP gave me a prescription for Lipitor (Sept.).
I stopped taking the drug around Christmas for no real reason. It wasn't the type of treatment where you could feel any differences, although I haven't had any symptons since the Fall anyway(double vision for a few weeks in July, some spotty numbness in legs/feet but everything gone by the end of October). As much as anything I quit because I just couldn't be bothered to get the energy up to go back to the doctor for more Lipitor...my Dad had a rapid illness and died in October and I've been pretty "flat" ever since.
I told the MS specialist I was taking the Lipitor and he was pretty nonchalant about it (again, the whole it doesn't really matter vibe I get from him), but still wanted me to take Avonex. He agreed to wait, scheduled me for another MRI (which was done before Christmas) and I'm to see him in early March.
I've since discovered info about LDN which seems pretty encouraging, most of what I've read are people who have had good results (some bad, some who have adverse reactions, but mostly positive). So, once again, I took my info to my GP and she wrote me a prescription for LDN. There isn't a pharmacy in the city I live in that produces it, but I found one in Toronto that will ship it and I will have it next week.
I've read some good things about a new treatment called Tysabri, you get it once a month at the doctor's, takes about an hour for the injection...the trials apparently have been very positive.
I live in Canada and Health Canada has not yet approved the drug. I'm told that it may be approved later this year, Health Canada is awaiting the second set of trials before approval. The FDA, however, has approved it and if you live in the States that may be something you would want to look into. (BTW, someone from this site told me the Health Canada info--this is a good site for support/info).
LDN is attractive because its oral treatment and I like the idea of staying away from needles and injections if I can, but of course I'll do what I have to I guess. Frankly cost is an issue right now. I work on a contract basis and therefore don't have any insurance coverage that typically comes with a "regular" job with benefits. Even with inclusion in an Ontario drug plan (Trillium) it would still cost me several thousand dollars a year for any of the CRAB drug treatments and even the Lipitor is over $125 per month. Maybe, on paper, the people at whatever government office think I can afford that rate (I would have to pay approx. $3,500 before Trillium benefits would kick in), but I know that's ridiculous. The Trillium plan just looks at your income and slides you into the category that matches the salary level. It doesn't consider other real costs like being a single parent, debt load, etc.
Anyway, LDN is $40 a month and from what I've seen a lot of people have had success with it, so my plan is to try it and get another MRI in six months and take it from there. My logic is if there is no progression six months from now and I'm tolerating the drug well then it seems like a good plan. That said, I'm going to keep my eye on Health Canada to see what happens with Tysabri--always good to have a back-up plan.
Joined: May 26, 2004 Posts: 1359 Location: London, ON, Canada
Posted: Fri Feb 11, 2005 9:51 pm Post subject: Re: Help! Just diagnosed..Not sure what meds to take.
Aylish,
You wouldn't by any chance be using the MS Clinic in London, ON would you? You mentioned that the clinic that you went to had over 6,000 MS patients and I know the London Clinic has that many. If that's the case, there is a pharmacy in London that compounds the LDN.
No, the clinic I'm talking about is in Kingston, Ontario and none of the pharmacies in Kingston do compounding, which is surprising considering one of the hospitals (with a pharmacy) is a teaching hospital associated with Queen's University.
The pharmacy I found is Smith's in Toronto - has anyone used it and if yes, has it been a good experience?
Joined: May 26, 2004 Posts: 1359 Location: London, ON, Canada
Posted: Sat Feb 12, 2005 8:05 am Post subject:
Aylish,
I find it strange, indeed, that there isn't a compounding pharmacy in Kingston!!!
Quote:
The pharmacy I found is Smith's in Toronto - has anyone used it and if yes, has it been a good experience?
I have not used Smith's but I have heard that other people have and are quite pleased with them. When we lived in Toronto, we used The Medicine Shoppe, on Bloor St. West in Etobicoke. They are a compounding pharmacy and that's who makes Marg's Prokarin.
Posted: Sat Feb 12, 2005 5:49 pm Post subject: Re: Help! Just diagnosed..Not sure what meds to take.
OneEyeBlind wrote:
I was just diagnosed on the 8th of January. My doctor is giving me time to think about medicating and to chose which one I would like to use. I am having a real hard time with this. Can anyone tell me what they have taken, how they felt, any major changes or outcome they had, etc.
Hi Karen,
I was diagnosed 7 years ago and had taken Avonex only, but kept seeing (pun, original symptom was optic neuritis smearing) increasing disability and lesions on MRIs. 6 months ago my new neuro started me on CellCept to try to calm down my overactive immune system. Seems to have worked. Last week I started Tysabri infusions and stopped CellCept. If the long-term studies show Tysabri alone is just as good, I'll stop the weekly injections too. Every week I have flu-like symptoms for a day after injecting, but found that Advil works far better for me than Tylenol. The Tysabri side effects were just a mild headache afterwards, and the rest I'm not sure because I got a sinus infection and have been battling that for a few days. I handled the injections for 5 years, but then after a few months of repeatedly hitting nerves, became needle shy and my wife started injecting me. I couldn't tolerate any of the other CRB drugs because of sensitve skin. Hope the Avonex works for you.
I don't think you should take LDN and Avonex together. The first stimulates the immune system and Avonex suppresses. Others will correct me if this is bad info.
Posted: Sat Feb 12, 2005 5:56 pm Post subject: fluorescent lighting
OneEyeBlind wrote:
I did suffer from Optic Neuritis back in June. I had a total loss of site in my right eye. I did treat with Steroids and it is much better. I regained most of my site. (I would say 90%) ( I still notice it when its cloudy or in bright florescent lighting)
What are your problems in bright fluorescent lighting? I find I can't tolerate bare overhead fluorescent lighting, those really bright point lights that seem to be used everywhere these days, and really any point light source. I can really see the one eye that's dimmer when walking around the dim house in the early morning.
Joined: Jan 15, 2004 Posts: 88 Location: New Jersey, USA
Posted: Mon Feb 14, 2005 3:24 pm Post subject:
It has been almost 2 years since I had the optic neuritis. At this time my eye sight is back to 20/20 and that is after being blind for 6 months. Overcast- cloudy skies, BRIGHT Flourscent lighting, like in the grocery store, really affect my eye. Otherwise it is fine. _________________ Karen (OneEyeBlind)
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I was just diagnosed on the 8th of January. My doctor is giving me time to think about medicating and to chose which one I would like to use. I am having a real hard time with this. Can anyone tell me what they have taken, how they felt, any major changes or outcome they had, etc. This really sucks. 
I decided this was a thread for this info.
to see the article about alpha lipoic acid on this site.
Guess what, it seems to be working, maybe even helping the spasticity.
