MS--anybody on here have it?

@Melizzy (1381)
United States
December 25, 2006 10:03am CST
I've been diagnosed just about a year and a half. I'm looking to see if there are any others on MyLot who also have the disease? If so, what types of treatments are you doing? I take Copaxone injections daily.
2 people like this
14 responses
• United States
4 Jan 07
I've had MS now for 8 1/2 years (I only need 1 1/2 more without a major relapse and I'm considered to be in remission!). I've taken Avonex, but the side effects were horrible, so now I'm taking Rebif 3x a week and doing fine. I was dx'd by a different doctor than the one who told me I have 'benign' MS and now I'm seeing a totally different doctor.
@Melizzy (1381)
• United States
4 Jan 07
Please define "major relapse" and congrst! I'm pulling for you!
1 person likes this
• United States
14 Jan 07
What type of side effects were you having on the Avonex? Every injection made me exhausted and pretty much did me in for the rest of the day. Plus, it gave me horrible migraines!
2 people like this
• United States
15 Jan 07
Melizzy-- I took it because the "expert", my doctor, said it was the best thing available to prevent relapses. Now, I'm starting to get the idea that he is full of it and I should be looking for a new doctor. Unfortunately, I live in rural area and there are only two neurologists within 2 hours of where I live, so I'm kind of stuck with what I have unless I cna find a good doctor in the St. Louis area. Tehn, I'll make the two hour drive
2 people like this
• United States
27 Dec 06
my partners brother was diagnosed about 3 years ago. Last year he wasn't able to walk. Then he got some experimental treatment and now he is walking and driving. He is still a little unsteady sometimes but the improvement was amazing. He got intensive chemotherapy to wipe out the immune system and rebuild it.
2 people like this
@Melizzy (1381)
• United States
27 Dec 06
Wow! I've never heard of that. Can you tell me more? Where he went, how he got into the treatment? Anything is helpful. There is so much we don'e know about this diseas.
1 person likes this
• United States
27 Dec 06
It was some program through Johns Hopkins hospital here in Baltimore. Apparently there was a woman who had MS and then got some form of cancer. When she was treated for the cancer the MS got a little better. I think there is some kind of study now.
2 people like this
@Melizzy (1381)
• United States
27 Dec 06
Cool. I have a friend who goes to John Hopkins. The great strides they are making in medicine is very encouraging. I do not want tohave to use a scooter or wheelchair, but I know I may one day have to do that. I take a lot of vitamin supplements.
1 person likes this
@leayahri (23)
• United States
27 Dec 06
I have not been "clinically" diagnosed with MS yet, but I am currently taking prednisone daily and having IV steroid treatments for one week every month. What symptoms do you have? I have heard from my doctor that if you are still in early stages of onset you can take vitamin D to suppress any "episodes" as he likes to call them. I have already gone almost completely blind and have severe tremors so I am far beyond the vitamin D. All they are waiting for with me are a few more tests to finish up and then I will be diagnosed. I am currently diagnosed with Devic's disease... I'm not sure if I spelled that right. It is the first severe sign of PPMS.
2 people like this
@Melizzy (1381)
• United States
27 Dec 06
Man, I'm sorry. Devic's disease is often misdiagnosed as MS. For MS it's fairly "simple" to diagnose. They do a spinal tap. I know someone who had Devic's disease. She spent a few years thinking it was MS before they figured out it was not MS, but Devics. She too went blind, but got her sight back. Hang in there!
1 person likes this
• United States
27 Dec 06
It really isn't that "simple" to diagnose MS because you have to have a certain number of each thing. I have already had a spinal tap and because of my low immune system I got a serious infection. According to the MS Society there are many factors and you should really look into that if you are going to say it is "simple" to diagnose. I have been going to doctors for six months or so just about every single day. It could still take years for me to ba fully clinically diagnosed. My blindness, however unfortunate, is permanent. I have the same levels of elevated IgG that anyone with MS could have, yet I sit and wait to hear when I will be diagnosed. It's not all that easy for everybody that has MS to be clinically diagnosed with it.
1 person likes this
• United States
14 Jan 07
Who is telling you that you aren't clinically diagnosed? My stupid primary care physician tried to tell me that the diagnosis from my ophthalmologist was not sufficient. He said only a qualified neurologist could give me the diagnosis, but the first time I went to a "qualified" neurologist, he missed it. And, three years later, I had another episode, or relapse, and had a month of double vision in my right eye. That's when my eye doctor sent me for another MRI and another spinal tap and he diagnosed me first. Then it was confirmed by the spinal tap and the neurologist. It was the four visible lesions on my brain (in the MRI) that made the diagnosis pretty simple. There are other things that can mimic MS, but between an MRI and spinal tap, it's fairly obvious. You may want to look into other more recent options for treatment. A lot of beta interferon treatmetns theoretically help suppress the relapses. Most likely, the prednisone is to help restore the damage done to your optic nerves. So far, I've been lucky and though I had a single incident with my eyes, I have not suffered any permanent eye damage from teh MS. Unfortunately, my medication for the MS has given me a cataract in my left eye, but hey, they can fix that.
• United States
4 Jan 07
I've been living with MS for about 7 years now. I was previously on the Copaxone injections for a few years. The biggest problem is that you never know if it's working or not. You just have to take it on faith that you are better off than you would have been had you not. I stopped doing the injections for financial reasons. I was able to get a grant from the National Organization for Rare Disorders, and they paid for it for awhile, but I quit about 4 years ago. I do ok except I have to take a Parkinson's med daily for the spasms. My condition has not changed since the onset. The symptoms just vary in intensity from time to time. I'm one of the lucky ones I guess, as I have a cousin with MS who is confined to a wheelchair. I used to rely on a cane, but no longer need that...so on I go. I used to go to a support group, but they quit meeting. They can be a great source for information and assistance. If you need any info or just want to ask more questions, buzz me. I'll be glad to help.
@Melizzy (1381)
• United States
4 Jan 07
Yeah, NORD is currently paying my COBRA insurance. I've done pretty ok, just a lot of fatigue. I used to be able to go for days on end, but now I actually have to pace myself! The support groups around here are filled with older patients who had no access to meds and are all wheelchair bound. I can't go there.
1 person likes this
• United States
21 Jan 07
Thank you for sharing about NORD--I can barely afford my health insurance and since my disability is still 'unrecognized' except by one or two doctors (my insurance won't pay for follow up testing and I don't have $2-$3k sitting around for this), I'm inelible for medicare or the free state program. I'll check into this tomorrow--there's light at the end of the tunnel! :)
1 person likes this
@reinydawn (11649)
• United States
26 Dec 06
I have not been diagnosed with it, but I have heard of some people who have gotten relief using natural suppliments. As I have not had this personal experience, I cannot say what the results are. I have heard that it is not an easy thing to live with all the time. I wish you the best.
2 people like this
@Melizzy (1381)
• United States
26 Dec 06
Thank you. There are so many different natural supplements that it gets confusing!
2 people like this
• United States
23 Jan 07
I would look at taking Usana products for your MS. My wife has had MS for 6 years now and we started her on the MS treatment plan from Dr. Strand for MS. She started this treatment plan 2 weeks after her doctor telling her that she had MS. These product are pharmaceutical grade and are in the Physician Desktop Reference. The only thing I know for sure is the her last 3 MRI's (3 years) show NO increase in white lesions.
@Bytemi (1553)
• United States
18 Jan 07
I lost my site for the first when I was in the 7th grade, it took them over 10 years to stop calling me a hypocondriact (sp??? sorry) and figure out that I did have a problem. I have tried all the medications and I have suck a bad reaction to them that I stop taking them, the meds are worse than the illness. I wish there was a better way to maintain it.
2 people like this
@naps2c (137)
• India
17 Jan 07
i had been diagnosed with multiple sclerosis when i was 12..the vision of my left eye was hampered...i took some steriods...the left eye became okay...but later on it got transferred to the right eye...then the doctor suggested i go for REIKI treatment....so i underwent reiki treatment and now my vision is fine
2 people like this
@stateroad (730)
• United States
31 Jan 07
I have MS and was diagnosed in May 2004. My course of treatment is Avonex which is the weekly injection. I am doing well with this course of treatment.
1 person likes this
@Melizzy (1381)
• United States
1 Feb 07
Good to hear! I am excited about the possibility of amnio fluid containing useable stem cells! It may help us all!
• United States
21 Jan 07
Yes there are others. I have Primary Progressive MS and was dignosed in 2001. When on treatment then with Copaxone, at that time was still very new and came as kit. You had to mix each batch yourself and once mixed was only good to use for just a few hours. Since then they have come up the formula we have now in pre-filled injections. So far the copaxone seems to have slowed the progression at least thats what the doctors say. God luck and let me know how you are doing.
• United States
14 Nov 07
you have primary progressive, could you please tell me what symptoms you were having?
@sherrir101 (3676)
• Malinta, Ohio
18 Jan 07
I was dx'd July of 1998. R/R Avonex for 5 years. Now Copaxone. Boyfriend/husband has had MS @ 25 yrs. Used Avonex. Currently Using Copaxone.
1 person likes this
@Shaun72 (15968)
• Palatka, Florida
15 Nov 07
I have had ms since 2002 that I know of but I got diagnosed later then I should have. I take rebif myself. I tried Copaxone to begian with. Best of luck to you Melizzy.
• Australia
10 Mar 07
i am 21 living in Australia and i have been diagnosed with MS for three years. i am curretnly on Rebif 3x a week and i am currently doing well. i am currently in hospital for an exasibation of my MS but i am able to hopefully fully function when i get out. it was my first exasibation since i got diagnosed so im doing really well.
@MamaRain (18)
• Canada
10 Mar 07
Hi Lizzy, I've had MS since about 1995. I am Aggressive atypical RRMS. I am doing Betaseron and Cytoxan aka cyclophosphamide which is a chemotherapy. I also take symptom meds such as baclofen (which I'm switching!!), oxybutynin, Ritalin (for fatigue), & zelnorm... Oh and I've done oral prednisone and i.v. solumedrol. I have also done LDN as an alternative med and vitamins, Avonex, teriflunomide in a study... One thing for sure we're all different the symptoms we have, how often we have attacks, what works for us etc... but for me having had this for as long as I've had I could be an MS doctor! I hope you research anything and everything someone puts forward to you as treatment. e.g. glyconutrients! NOT AN MS TREATMENT no diff than taking vitamins and changing your diet ;o) People who work for the company go all over the net trying to get MSers and others with illnesses to buyt heir stuff! Do whatever works for you but be educated on it ALL!
• India
26 Dec 06
no