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After encountering the worst neurologist during my diagnosis (his name is Mark Silverman out of Milford, by the way), through word of mouth I found an amazing doctor. I loved this man and the way he ran his practice and his amazing office staff. In fact never told anyone I knew about him because I didn't want him to get too busy. He was my little neurology secret. Then my perfect doctor decided he wanted to retire, which is a patients nightmare. His replacement didn't knock my socks off. He was nice, did his job but didn't really do it for me. So I decided that since I was "in between" doctors that now would be a great time to find a specialist. Who knew what a freakin chore that would be.

I did a little but of research and found this website http://www.msneuroratings.com/, which I encourage ALL of you to use and update. It could be a great resource if more people use it. I also have a friend who sees a local neuro at the University of Michigan MS center, whos name is Dr. Irani. I work by this hospital and decided that U of M is pretty renowned and that he was the one I wanted to see. WELL...U of M lives up to its name and is snobby as ever. Not only did I have to have a referral, but there was also a process in which they could accept or deny you into their center for treatment. So from my files, they were going to decide if I was cool, or interesting, or messed up enough to see them? WTF. I was pretty pissed about this, how dare they consider denying me treatment...but then I realized...they can't treat everyone. I never found out what the grounds for denial were, but there is still a small part of me that thinks its pretty shitty. Not to mention that the wait time was over 3 months to get an appointment. Nevertheless, I still decided that I want to see this doctor so I send them all my files and information and waited.

In the mean time I called 2 other specialist both out of Detroit, Dr. Elias and Dr. Khan. I had read a lot of info on Dr. Khan and decided that he knew his shit enough for me to get an appointment with him. When I called there it was a totally different experience, more like "ok what day can you come in". I made an appointment, 2 months out and called it a day. When I was scheduling all of this it was far before my recent medical disaster, and while I was in the hospital I got a letter from U of M telling me when my appointment to see Dr. Irani was. Nice of them to call and see if I had availability that day, but who am I kidding, I'm not busy. So I called Dr. Khan and scheduled them for the same day to knock them out at the same time and get all of my little MS errands done. Once I got the U of M appointment, I canceled the one with Dr. Elias, he was a 3rd string pick anyway, also looked like he could be old, and further perpetuated my fear of my doctors retiring.

 
Useful Links 04/22/2009
 

So because of the politics of the internet there is this unwritten agreement that you're supposed to link to everyone who mentions you in their site...and vice versa. Well I think that's crap, which is why we have chosen not to have a gigantic blog roll listing every MS blogger under the sun. If you want to find people out there who write about MS or good research, that is what google is for.

Instead of keeping a list of every important website ever, I have made a list of few of my favorites, most helpful and ones that have listed us without asking for a link in return (god forbid). I will be compiling lists like this periodically, so if you want your blog, or your fav. website listed let me know, or just post it in the comments.



BLOGS
- there are easily a million blogs about living with MS. Here are some that I read., many of which I found because they have left a comment on our site. I'm not saying thats the only way we'll list you, or read your blog, but...it helps.

brassandivory.blogspot.com
estreetanne.blogspot.com
noempirenomore.blogspot.com
thompsongirl84.blogspot.com/
Tinglyfeeling.com

FORUMS-Again there are a million forums here are the ones that I have used, and have worked out well for me.

Shift.ms-
Two words: GREAT SITE!
Dana found this one the other day and we both joined and have found it to be awesome. Its well designed, which I totally appreciate and it also hits the same market that we're aiming for. Young people with MS. They offer more of a community than we do because you can register and login to find people, and create a profile.

msworld.org
-Great forum here. There are a lot of people here who are helpful and who have been doing the MS thing a LONG time. Many who are on meds, many who are not, mayn young, many old. It helped me A LOT in the beginning.

friendsofmsworld.proboards.com  -A nice off shoot of MSworld.org

Patients like me
This is actually a really cool site. Pre warning there are a ton of bible thumpers on here...however they have great forums and a lot of really good tools for tracking your disease progression. And its not nearly as lame as that sounds. You can click on your level if disability, mark when you have attacks, your meds and dosage, your weight, and also it gives you off an form with ALL this info in it so you can take it to your doctor and file it. The only downfall of this one is that you cannot make your info private, i.e. your weight, symptoms, and stuff, but the idea is that by being honest we can help each other. You can also type in an age range, and location to find people close to where you live. Its pretty cool.

INFO
Rocky Mountain MS Center Complementary & Alternative Medicine (CAM)    - good website with info on alternative therapies. Vitamins, supplements etc. 

Myelin Repair Foundation


Stem Cell Research
         Stem Cells.nih.gov
         The Stem Cell Blog

Medicinal Marijuana


ConquerMS

FINDING CLINICAL TRIALS

National MS Society

MS Clinical Studes

Trial Search from the Gov.

Trial Search: