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My real name John. I live in New Glasgow, NS, Canada.
I'm 53 and was diagnosed PPMS in March of '98. I'm married (22 years) and 2 wonderful teenage kids. I'm currently not on any medication, as there seems to be little available for those in my situation (i.e. Primary Progressive, emphasis on the Progressive). In the first 3 years after Dx I had my mercury fillings removed, took chelation, went on a low-fat, gluten-free diet, used Procairin, took copaxone for a year and tried to maintain an exercise regime (primarily swimming). Nothing helped slow my progression.
In the time since my diagnosis, I have gone from walking unaided to being in a wheelchair fulltime. I have had to leave a job I loved and go on LTD.
Not a happy story and I do try to get the message to others with MS - please don't look at me and my MS experience as an example. I am at the far end of the spectrum of what can happen. On the other hand, if my inner strength, determination and natural optimism can provide inspiration, feel free to take whatever works for you.
Posted: Mon Dec 29, 2003 9:18 am Post subject: Welcome...
Hi John...welcome to the group. Just wanted to mention that there is always LDN. Think it is so important to all to know that no matter what type of MS you have, LDN works the same. I must also say that this is not a symptom reliever. Any previous damage beyond a 3 month time period will probably not be recovered but if one can halt any further progress of the disease that is a wonderful thing. Many have reported improvement in fatigue and bladder problems. I've been on it for about 19 months now and so far so good. Ijust think that people need to know that regardless of what type of MS you have you can take LDN. Good luck to you and I'm sure our paths will cross here.
I was diagnosed with R/R in June 2002. I've tried rebif and avonex and I didn't care for either one.
I'm 30 years old, married with two kids and live in Portland, Oregon.
This monster called MS is so rude!
Posted: Mon Dec 29, 2003 10:52 am Post subject: Would like to introduce myself....
Hi Everyone,
My name is Michelle, I'm 51 & diagnosed last March with RRMS. I had minor symptoms for years but always put it down to stress. I woke up one morning with double vision, Bell's Palsey, vertigo, etc and went to ER with what I thought was a stroke. My Neuro suspected MS from the beginning but I thought he was crazy. I didn't take long before I had the 2nd & 3rd exacerbation & got diagnosed.
I started with Betaserone but had an allergic reaction to it so I am now on Copaxone. Doing OK.....but am slowly progressing.
On the upside, I have a grown daughter that I am very close to. She is getting married in October & I like her fiance alot. They have been great the last 10 months. I'm also a sucker for stray dogs & have 3 rescues.
I like this site. It's really easy to get around. The journal feature is great!
I'm Anne, in my 40s *smile*, diagnosed with RRMS in spring of 1999. My symptom at diagnosis was optic neuritis in one eye (central scotoma). I think I had exacerbations twice before in my right arm (spasticity) and right leg (foot drop). I didn't seek serious treatment until ON, though. No matter how much denial I would like to carry, blindness finally made me sit up and take notice.
I am now on Copaxone and doing fairly well. I was on Betaseron for a couple of years but developed nasty side effects. Plus, I still experienced TN and facial numbness while on it. On the plus side, I learned how to mix injectables fairly well!
The loves of my life are my husband, cat, and lovebirds. The pets rule the household.
Thank you all for saying hi and posting some information for the rest of us.
John, I am totally impressed by your attitude and am really looking forward to reading your future posts. I'm glad you introduced yourself and that you are willing to share your experiences with PPMS.
Lottydotty, your username makes me smile, I like it! But, you are too young to be treated so "rudely". If we could just tell the rude MonSter to back off, and leave you alone.
Hello Michelle. Isn't dizziness a joy beyond compare? I hope it doesn't still bother you. It was my constant companion for the first 3 years or so, then it gradually eased up. Now a days, I only have an occasional problem with it.
I am looking forward to getting to know you all better, I am loving this new forum board.
Annie, just read your post, it is good to meet you too. We are in the same general area, age-wise. I have become very interested in bird watching this past year or so. It is soooo relaxing. Would love to hear more about your birds. Thank you for posting. _________________ Bonnie
Indoors or outdoors, birds remain wild. I think that's the most interesting thing about them, and it's the thing that people are most likely to forget. They haven't lived with us long enough to be domesticated.
The lovebirds have been an absolute trip! The female took over the house stem to stern. The male is much more subdued. I am getting used to being nipped every once in a while. It goes with the territory, like getting the occasional scratch from the cat.
Thanks for the welcome....I think I will enjoy this forum. It's nice to join early so you can get to know each other. I'm kind of shy on the MGH board.
Bonnie-yeah, the dizziness is fun! Thought I would lose it when I went from a blonde to a redhead...but no such luck!
Posted: Mon Dec 29, 2003 3:38 pm Post subject: Nice to meet ya
Female 40 something. Married (20 years) one teenage son. Dx'd 10/03 after 3 yrs probable. Sx's to include but not limited to......dizziness, memory (or lack there of), migraines..and oh... the fatigue.
Saw 3 ENT's, 3rd one doing the MRI and finding 9 lesions. From there the jouney began with a neuro that I saw for 3 years, he went back and forth, from yes you have ms..to no you don't. Finally went to a MS Specialist and was dx'd within a couple of months. Started Avonex right away, still having side affects from that.
Michelle, it is fun starting out at the beginning of a brand new site. One day we will be able to say we were here when the site began, well practically, since it started in November. Do you take Meclizine or Antivert for the dizziness?
maybelater, What a great username. May be later you'll tell us about what made you chose it. HaHaHa Another 40 something on the site I see. Sorry it took you a while to get dx, but glad you are able to fight progression now. I look forward to getting to know you too. _________________ Bonnie
Posted: Tue Dec 30, 2003 2:16 pm Post subject: I'm in!!
Hi Bonnie and everybody. I'm in! Poor administrators, been bugging them for days over a dumb mistake in my email setup. THANK YOU ADMINISTRATORS! (and I love my password, hee hee)
Anyhow, I'm May, I'm a 40-something, diagnosed R/R, doing pretty good, I have asthma too. This is a neat site! Glad I can log on as me and not "guest", now I feel like "family".
Hey folks, Not much has happened on this site for the last 3 days so I thought I'd drag myself from the bushes where I've been lurking and introduce myself.
My name is Peter and I'm an alcoholic (woops, wrong board) Actually I don't smoke, don't drink, and have been happily married for 21yrs, 6months, 1 day and 1 1/2 hrs, but who's counting.
Diagnosed in Aug of 2000 after experiencing symptoms since 1987. I had a major exacerbation starting on July 4th of that year that knocked me for a loop. After going through all the testing and stuff my neuro finally gave me the IV steroids at the end of Sept and calmed this thing down. Unfortunately for me much damage was already done. I ended up closing my business ( construction of single family homes since 1981) and laid off my help. By March I was on SS.
Since that March I've been on Copaxone and have been exacerbation free. Last Aug something inside took a turn for the better and I'm starting to work again at least part time. Luckily some of my old customers stuck with me and I've got years of work ahead if I continue to do well.
Is the copax responsible? Or is this the natural course for *MY* ms? We will never know I guess but I would like to think it has something to do with it.
I guess we are all trickling back now, getting back on a normal schedule and routine.
May, you have asthma AND MS? Is Asthma also an auto immune disease? If so, how is it, handling both at the same time. I'm sorry you had so much trouble getting on the board, but glad you are here now. I'll look forward to your future posts and getting to know you.
Peter, that is quite a recovery you made for sure. I would think Copaxone had something to do with it. I know it helped me a lot when I started taking it. I like your sense of humor, so will be looking forward to your posts. _________________ Bonnie
Posted: Sun Jan 04, 2004 11:04 pm Post subject: new to MS for someone I love
Someone I love has MS, with a recent flare up. I picked up a book to get more information that might help me be a support - and feel more devastated. There are so many different complications and so many problems - the book made it seem that there would be no happiness in the future for my loved one at all! Please, tell me you still find happiness - and how I can help the one I love.
Susie....what book did you happen to pick up? It must have been one from the nineteenth century. Can you have MS and find happiness? Of course you can and do. I have had MS for 35 years and I'm happy......been married to same wonderful man for all of those 35 yrs, and have 3 wonderful children and 6 grands and a shitzu.
There are more serious forms of MS, but the majority of MSers, including those in wheel chairs, have found life to be happy and rewarding. A positive attitude is most important. Life changes and there are realistic limitations, but there is no limitation on happiness.
Glad you are all here...this could become one of my favorites.
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It goes with the territory, like getting the occasional scratch from the cat.
