Looking for old board members, if you can please check in

[soul]

Its been a few years since I have been here, I miss my old home and some of the older members.
Please check in if your out there and that pic of me has changed my hair is pretty much white
soul

[Ikoiko]

Hi, Soul! I have been here since the Wild West days before this forum was moderated. But I have never posted much, especially back then. That must have been the mid-1990s.

[Virginia]

Hi Soul, I've been around since 1999. I didn't post as much back then. I do remember you. I hope you are doing well. Tell us what has been going on in your life. I may be remembering this wrong, but seems that you might have been on Rebif for a while. Glad you came back home. Hope you will stick around. We are small now, but those of us here feel more like friends.

[agate]

soul, how nice to hear from you! You've been missed here. Hope you won't make yourself so scarce now that you're back. What have you been doing?

I've been here since 2001. There are a couple of old-timers who check in occasionally, and they just might appear if they happen to see your thread.

Ikoiko, there was a time when this place wasn't moderated? Never a dull moment in those days?

[soul]

Hello old friends yes it has been awhile and I remember everybody who has chimed in thank you , I think I was here a few years back but who knows mind you its all in the data. Yes Virginia I was a Rebif user for 18+ years I quit in 2012 then my Neurologist gave me a new and controversial dx of “Burn Out MS” with in a year or so I developed Secondary Autoimmune issues that I still live with. I am in my 60’s now and my hair is turning white, I life live with my partner Stella the Cat,
I think I joined this board in the late 90’s and went through a few name changes as did the Board, I used to get together with various members from here and we would meet in Toronto for lunches, I miss those days
I went to see a Neurologist a couple months back I guess I still have MS, I am pretty much a pain in the @ss when it comes to the neurologist’s but I’m still kicking, after the last dx of “BOMS” I became very active started riding bicycles again, then I had a fall last year actually the day my new bike arrived, I slipped on the ice and did in my hip I can still walk but it’s painful but it makes me realize I’m still alive.
So for my MS symptoms now I use pretty much all natural, I use Lions Mane Mushroom and I infuse Bee Honey with MJ a mix of THC - CBD a spoonful of honey helps with the pain and spasms
I believe I need to come back to the board think I am going to start hanging out here again if its ok
agate,Virginia, Iko, I remember all of you and its nice to type with you again
soul

[agate]

Really too bad about your hip injury, soul. I hope they've checked you out for osteoporosis because many people with MS seem to get that too as time goes by. I don't suppose you've been able to ride the new bike since the fall--?


Burned-out MS is just a theory that some experts have floated but I don't think they know for sure that there is such a thing. Neurologists don't seem to know what to do with us since we stick around for decades with the MS, and there we are, and there they are, and about all they can do is chart a few findings with the help of their reflex hammer, and maybe order up an MRI, and send us home

If you felt that the Rebif was helping you, I'm pretty sure you could ask your neurologist to prescribe it anyway. I'd be surprised if the request was refused.

My neuro wasn't totally on board when I said I wanted to return to Copaxone after 10 years of being off it, but she did prescribe it.

[Virginia]

Come on back. We have our chit/chat thread and talk about everything, MS related or not. So, just join on in with us.

[flatcap]

soul, I agree with Ikoiko, agate, and Virginia: Welcome home! I'm a newcomer here, and I have been welcomed as if it were my own.

It's a great place to be, even for those of us who are over the hill...



...maybe especially for those of us who are over the hill. lol

[flatcap]

Burned-out MS is just a theory that some experts have floated but I don't think they know for sure that there is such a thing. Neurologists don't seem to know what to do with us since we stick around for decades with the MS, and there we are, and there they are, and about all they can do is chart a few findings with the help of their reflex hammer, and maybe order up an MRI, and send us home

I understand your frustration. My experience with neurologists has left me with little faith in neurology in general. Only one seemed to have a clue, and she was in her residency at the UW MS Center so it didn't last long. One thing she left with me was her approval of my not wanting to go on Tysabri. It's not easy to find that kind of respect from any provider, especially a neurologist.

I dug deep into the topic of MS soon after I was diagnosed in 2005, getting so far into it that I could read my own MRIs. Since then, I have been far less focused on the subject and have mainly followed the news, where it only infrequently comes up. Even then, it's usually about some miracle drug going through human guinea pig trials, with its future use remaining in question. And the underlying, if not main, issue is always how will it affect the stock price of the drug company.

Every time I look any further into it, I find the new treatment is based on the same animal model that has been in use for decades now, and as you said, where has it gotten us? A smorgasbord of toxic stews from which to choose if we want to play Russian roulette with our immune systems, and that's about it.

They don't even know how the DMTs work.

So, having MS can make you a cynic. Few escape this completely, I think, although it seems to me that many think they have. We already talked about Momentum magazine. Such people star in every issue: they are up on the mountain or out on the beach, while the rest of us get to pound sand.

[agate]

I wonder if some neuros--the better ones--just let their MS patients lead the way when it comes to their care, at least if they've had MS for a while. I like that attitude. After all we're the ones who have to live with MS, and most neuros, unless they themselves have MS, aren't really going to understand what that's like.

That's why I think soul could easily get back on Rebif if he wants to--if the neuro is a good one. It sounds as if the neuro might have been one of those "My way or the highway" people, though.

[flatcap]

Possibly you are right about that.

My first neurologist was in general practice when she gave me my diagnosis. I never doubted for a moment she was right — she had both an MD and PhD — but her bedside manner was abysmal. Before she went on to specialize in MS, she told me that she thought MS patients were the most difficult to handle. Too many complaints, from what I could gather.

I was a little confused by this but figured she was really in it just for the money. I looked her up one day and found she had given talks at conferences sponsored by a drug maker. Big surprise. I had heard of this sort of thing on the news before, so I guess it was only a matter of time before I would see it for myself.

Maybe the better neurologists do allow a patients to lead the way. I had a good one for a short time, and that is exactly what she did in my case. I only wish I could have continued seeing her. She moved ~200 miles away, then became a hospitalist instead of an MS specialist.

[soul]

Good morning, I was part of drug trials for Serono and because of that there is an 18 year black out in my MS records to quote my latest neurologist “I can’t find any info on you pertaining to MS”
So basically I have no history of MS, I like reading my medical records and always ask for them, and yes it’s pretty much a blank page. I had a MRI about a month ago and mentioned it to an aquatence and they asked “ So are you ok? No I have MS oh so you were just dxed I replied yes for about 40 years. This hole in my medical history at times is very frustrating.
soul

[flatcap]

soul, I don't know if it would help, but could you direct your current provider(s) to the ones you saw in the past 18 years? Can they transmit medical records between each other, or does it all have to go through your national health service?

Either way, if I were you, I would probably fire your current neurologist for not trying hard enough to get your records. Putting all of the burden at your feet seems very unprofessional to me.

As for your records of the drug trials you participated in for Serono, I never heard of them, so I looked them up. Evidently, they sold out to Merck in 2006, but I would think they still keep records of the Serono trials. Maybe you could have your neurologist contact Merck for your records? Perhaps they would at least show that you had MS at that time.

If none of that works, then I would think your latest MRI would provide fairly conclusive evidence of the fact that you have MS. I suppose your current neurologist might have you get a spinal tap to confirm it, but in your case I would probably decline to go through one. You can't make stories like yours up unless you are a very smooth operator. If there isn't mutual trust between you and your provider(s), then I would go somewhere else.

[soul]

I was involved in the PRISIMS trial, in Canada from 93-97, then I moved to the US while there I was still in the trial until licensing by the FDA, I returned to Canada ten years later and all my MRI’s that were shot state side were put into the data set of the trial, in a way it was my fault I was asked by Canadian Neuro for the disk,at the time I was basically having a breakdown, he took the disc, that I thought would be returned to me, needless to say he didn’t return it and it ended up in the data set. Serono/ Pfizer Merck was the company that made Rebif once they were given FDA approval they teamed up with Pfizer for their marketing in the USA, there is no doubt I have MS, but having that history pulled is in my mind pretty disgusting my medical history was pulled out from under my feet.

[agate]

Egad, and you took Rebif for 18 years? Why in the world would anyone do that unless MS was present? There are surely records showing that you were taking Rebif for all that time even if it's only pharmacy refill records.

In the US and probably in Canada too, there's usually a list of code numbers at the top of every statement you see from a medical provider, or else a code is written in somewhere at the top of the page. The WHO diagnosis code for MS is 340. That code number (or another one meaning MS but it's always been 340 when I've looked) might pop up on lots of different medical records you have or could get hold of. I wouldn't think you'd need any more evidence than that diagnosis code. It's probably a doctor who entered that code, and it wouldn't have been entered if the doctor didn't assume you have MS.

Lots of times the codes are entered with an eye toward the insurance coverage but they still have to be basically valid, I think.