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

[soul]

There was no question MS was present from the Canadian Neuro and his friend my US Neuro I copied all my MRI’s there sitting in a box someplace I have probably been in a MRI at least 60 times since 93 for the study. And now I do them just out of curiosity.
soul

[flatcap]

soul, I empathize with you for the loss of your medical history.

I had a similar experience with respect to my 2017 MRI. I was unable to obtain a copy of the images from that exam, so I couldn't provide them to my new neurologist for comparison with the MRI he ordered last year.

I probably could have dug into it further and gotten the 2017 MRI images, but I had the report and didn't care about them. I still don't. I used to collect the images along with the reports, but I quit doing so a long while back.

So my neurologist is stuck with the images from 2022. That's OK with me because I am not planning to take a DMT. This makes MRI exams academic in my case.

I hope things get ironed out for you, but it sounds like you have a plan moving forward. That's at least half the battle, and I wish you good luck.

[Virginia]

Soul, even if you wanted to start back on a DMT could you do so now? If I remember correctly you have been off Rebif for a long time and you now live in Canada. Is that correct? I think the protocol for you if you are in Canada is different than here in the US. When you were here, at one point, didn't you live in Hawaii and at that time because you had been in the study, if memory serves me correctly you were able to get it on compassionate grounds.

I wonder if your latest MRI didn't show MS. MS leisons don't just go away, or I have never heard of them doing so. Do you think another Doctor who specializes in Radiology could take that MRI and read it? Another thing is, I don't know if your latest MRI was just of the brain or if you also had a spinal MRI, and I don't know where your leisons are. At one point they could not have diagnosed me with just an MRI of the brain. At that time my most prominent leison was at the base of my neck, high up on the spinal cord. Could it be that they did not do an MRI of the right area? Just lots of questions.

If you went back on a DMT would you consider another drug other than Rebif? Believe me I am not trying to steer you away from Rebif. I have been on it since two months after it was introduced in the US. I think I went on it in May of 2002. I have not taken a break in 21 years. Before that I was on Avonex for exactly one year and Copaxone for six months.

I remember the lunches some of you had in Canada. I was listening to all of it because I knew if Rebif got approved here I wanted it. A lady here in Maryland was in a study for that drug and you and one or two others in Canada. I wanted it because at that time it was basically the same drug as Avonex, but stronger. I think they have reformulated Avonex. I do believe in the DMTs, but for us older people I think some of the newer ones are risky. We know Tysabri can be, though it has been good for many younger people. My Neuro would not even let me have one of the infusions that has a side effect of lowering B cells. He said that can cause infections and he didn't want to start that. If you can get another pair of eyes to take a look at your latest MRI, assuming it was taken of the right spot, then you could decide if you want to go back on a DMT.

[soul]

Hello Virginia, Hawaii, I wish it was just a bit north east in Minnesota, I just want to clear things up, my MRI’s in Canada shows defiantly I have MS and my MRI’s and in the USA shows defiantly I have MS.What this all comes down to is that I was asked by my latest Nero to write up a MS history because there was nothing stating I have MS, when I returned to Canada from the US, I asked a sister of mine who is a RN to come to the local health clinic to help me sorting my health records out I live in a small town and most of the people who know me are and were aware I have MS .

Ok now I will get to the point while in trial I was to keep a journal, and I did but I didn’t write everything up I held things back certain adverse effects, I live with flashbacks from the trials, these shut me down into a wonderful state of depression, and after being asked to write up my history they hit me hard it took me months to write the document, with weeks of tears and depression. I went through Manic episodes and went through them for years, I remember shaking in anger at my then spouse, and yelling and screaming at them for no reason, the drug completly changed my personality and I became the type of person I dispize, I was married to a Scientest who helped to keep a lid on me but it wasn’t enough, eventually I left and returned to Canada still living with Mania, but not lashing out at my Ex I just lashed out at people around me and suicidal by the end of 2012 after I quit it took about 3 years to get back the person I had been prior to the (IFN). After writing up that history I went into a dark place with flashbacks again.

Before you judge me look into the PRISMS trials, there were not to many people reporting mania, because they were frightened to report due to they would be removed from the Trials
The medical history was written from old notes and files I wrote while in trial, believe me it was hard going through those files, I didn’t do much writing it was mostly copy and paste from the files I had written. I asked for psychiatric help when I showed back up at the clinic in Canada and at that time I was having a break down, I didn’t receive it because it haddn't been documented in my journal I kept during the trial, and again turned down when I asked for help with my current Nero again because it wasn’t noted in my journals I was turned down ,I live with the memories of needles blood and anger every day I used to be a very social person and for the last 20 years pretty much a loner I avoid heath care professionals. Those trials were the biggest mistake I have ever made in my life,

I probably shouldn’t had written this but I had to I am sorry, you should see the report the report I wrote for my Neuro I haven’t read it since I wrote it, I sent the report and shut the computer unplugged and put in a box, and bought a new computer, I can’t even open the damn thing up the desk top is covered in old files and documents
I am truly sorry for this
soul

[agate]

Hesitating to report a side effect of manic episodes while taking part in a drug trial because you don't want to be dropped from the trial--that just shows once again how truly desperate people with MS can become.

And it also makes you wonder just how safe the MS drugs are if there were severe unreported "adverse events."

I admire you for being brave enough to sign up for that trial. I'm so much of a wimp that I always give a pass to any trial where I'd have to take a drug.

[Virginia]

Soul, there is no need to apologize about anything. I have never taken part in any drug trials and we do know that one person's experience on one of these drugs differs from the next person. I am just sorry you went through so much and admire you for not getting out of it before you did.

I do wish you could get your medical records. I do not have many of mine. I kept them for a while, but now that I can just go into things on line that is what I do. But my circumstances are different as far as my MS goes. I lived in this same town when I was diagnosed and have continued to live here and there isn't much chance I will ever live anywhere else so even though I had a PCP that recommended I keep a copy of my records, I just haven't bothered. I guess I have gotten lazy about some things. It seems so hard to keep up with all the day to day paperwork when there is no one to help with it that I think I just got tired of worrying about it. As I said, now that I understand where you are coming from, I realize your circumstances are different than my own.

Though I have not formally been told I am secondary progressive, I don't think there is any doubt that I am. No Doctor wants to do it on paper because then I couldn't get the drug. While wishing you had not had to endure what you have, overall I feel Rebif has been good to me. I remember where I was headed when I started on it and I can only thank you for being a part of helping me ask for this drug.

I now feel like I have been a commercial for Rebif. Too bad they don't give it to you free for doing their advertising, even though I didn't mean this to be. LOL

[flatcap]

No need to apologize, soul.

Venting problems you have with the health care system is not only OK, it's to be encouraged. Readers here can empathize, others can learn lessons from your story.

Hang in there: You've come to the right place.

[agate]

I agree that there's no need to apologize. If you can't talk about your concerns here, what good is this place?

About getting medical records--A couple of times I've tried to get medical records and been told by the doctor's office that they don't keep them "that far back." "That far back" was only a few years--fewer than 10 years.

And one time I offered to try to get a previous MRI report for a doctor but was told it would be meaningless because it was "too old." It was only about 5 years before. Doctors seem to want to do their own tests on you and ignore your medical history. You'd think they'd welcome a chance to get previous information about you but I haven't found that to be the way it goes.

[soul]

Thank you all for your understanding,I have a GP appointment and I have to talk to him about this as I due need help what that help is I’m not sure, chances are I will be ignored but I will try. Hopefully he will listen
soul

[flatcap]

It sounds like you might benefit from preparing a list of the things you need to discuss with your GP and taking it with you to your appointment.

I always do that when seeing a provider and find it helpful in keeping my focus. It also shows your provider that you are serious about the healthcare you receive.

I recommend carrying your notes and any other paperwork you might have in a document wallet to keep things straight.

Hope this helps.

[agate]

Good advice there--and please don't assume you'll be ignored. There's something to be said for approaching situations expecting the best of people. Maybe you've been ignored countless times in the past--but if you can work up an expectation that this time you won't be ignored, it just might help.

[soul]

So I went to my GP, had a bit of a break down and told him whats going on and that I need help, he said my Neuro had mentioned that in the report, so I am talking to some people next week and will see where it goes from there
soul

[agate]

It's good if you reached out. Some people are genuinely helpful. Finding those people isn't always so easy but they're out there.

[Virginia]

Good for you Soul. You need to tell someone everything that you can remember that has happened.

[flatcap]

Soul, I understand your breaking down in a provider's office over your desperation to receive treatment that will relieve your suffering. That has happened to me more than once before, and I don't believe I am anywhere near alone on this, so I am guessing your providers are also aware of it and understand.

If you ask me, it's better to let it out than try and keep it inside. You'll just cry harder when the dam bursts, or at least I do if I try to be a "man" about it. It's just dumb to do that.

Or just talk about it here if you think no one in your orbit gets it. You're not alone on that, either. I might as well be on the moon in that regard; this place gets me out of that.

Good luck to you. I hope you get the attention and treatment you deserve at your appointment next week.