Diagnosed with MS - Page 2 - ThinnerTimes

blkmercedes · 03-25-2008, 09:51 AM

I just read your post and am truly praying for you! I hope that answers will be revealed and the pain will subside as you wait.

nextbigloser · 03-25-2008, 09:53 AM

I am so sorry to hear the news. Please take care of yourself and keep us posted. I will keep you in my prayers.

MiladyB · 03-25-2008, 10:08 AM

Trish, just wanted you to know that you are in my thoughts and prayers. I can only imagine how frustrated you are. There has to be fears that things will get worse while you wait for your appointments. I wish I had some words of wisdom but I'm afraid I don't. Katie gave a good suggestion...see if you can get on some waiting list, or maybe call daily to see if there are any cancelations? I don't really know how the Canadian system works but I most certainly understand your fears and total frustration.

Just a thought, is there any way of coming to the states for treatment? I know there are several who were able to get their wls in the states vs in Canada.

Dayanara · 03-25-2008, 10:18 AM

I had my surgery in the states actually.

I sadly cannot call the offices since they do not give me any of the information on who I am going to be seeing. I know the MS specialists name, but when I look her up she is no longer working out of the clinic listed. She recently switched to another clinic. But the other specialists I do not even know their names. My neurologists office calls and books all the appointments and then calls me with the dates. So stupid how it works. Doctor's offices don't like dealing directly with patients, just other doctor's offices.

My family doctor is kind of out of the loop right now, he is only just getting all the information on this and wouldn't be of any help really. My neurologist until I see the MS specialist is the only one that can really light fires under anyones butts. He told me to call him if I don't have an appointment date for the MS doctor within a month and he would "look into it" for me.

Just extremely annoying that I cannot do anything really. Cannot call and leave messages or anything, I feel helpless right now and I hate not having control, especially over health issues.

As for going to the states for treatments, I doubt OHIP (Ontario Health Insurance) would pay for that since once I do see the MS specialist things should (fingers are crossed here) move smoothly along. They really only pay for things across the border if it is a matter of life or death, and thankfully I am not dying, just inconvenienced by this disease.

So now it is just the waiting game...

OsoDelDesierto · 03-25-2008, 11:27 AM

Trish, I'm so sorry about the MS diagnosis! I don't have any words of advice, but am sending good thoughts and prayers your way.

Does Canada have an MS Society that you can go to as a resource or advocate as you navigate the complexities of the Canadian medical system? If it helps just to talk to people who are dealing with the disease, I could put you in contact with a friend of mine with MS, who is active in funraising for a cure here in Tucson. I also had an uncle (now deceased) with severely debilitating MS that started in his early 20s, and I could get info from my aunt as to what worked for them in their long fight getting the appropriate help from the VA, which is probably as bureaucratically nightmarish as your system...

Dayanara · 03-25-2008, 11:38 AM

Canada has the best MS Society and research facilities. Mainly due to the fact that Canada has the largest percentage of MS patients in the world. Sadly I don't think they can help speed up the process much at all. They can only give me resources for research and support.

There are many different places I can go for support, there is a chapter right in the city I live in. They have meetings once a month that I can go to.

Right now my support is coming from all my friends and family. I am going to be checking out the meetings at some point as well.

pebitpeb · 03-25-2008, 11:50 AM

My Mom, god bless her soul was diagnosed early by a Dr. in 1958 as she was ending her University career to become a RN and also to begin having a family, at this time she was in Oregon, however shortly after having me in 1962 we were living in Minnesota and the Mao(spelling?) clinic was her haven, it was the early years then and many advised her of not having children, keeping low stress lifestyle, the list went on and on, she had another child 3 years later and and 2 years after that she became confined to a wheelchair as her right side totally was taken from the MS. Having told you this since those days the treatments of MS are amazing, the medications that are available and through a system that is top in the field I am sure that you will receive the best that can be found, as I have heard that Canada is tops in the MS health system.
This must be a real shock to your brain and body, but from the sounds of it you certainly have family and friends that sound as if they are being very supportive. We here all care also.
Waiting will be difficult I know as you want to get this matter under control and get started on the medications that are set in place for taking care of the MS symptoms.
My thoughts are with you in this time and you will be sent much positive energies.
Please look into getting on a waiting list and be persistant about it, call and check frequently and let the Dr and clinic know that you are extremely anxious to get this situation under control quickly.
All the best to you and your family during this time.
pebitpeb
Paul

sdgrrl · 03-25-2008, 12:27 PM

I am SO sorry to read of your diagnosis. I hate that disease! I have had numerous friends and one family member with your diagnosis. It's a hard path to travel, and my thoughts are with you, willing your body to fight for remission.

When my MIL was diagnosed 30 years ago, she was 48, which was very late for a diagnosis. It's an evil, young person's disease, robbing you of your best years. MIL never once went into remission, and I will not discuss her case. Suffice to say bourbon isn't a good cure, and she did nothing to fight.

Research natural remedies to help your body fight this. Evening Primrose Oil is an excellent remedy, and I will research some of my resources to find some more for you, as I have practiced Naturopathy and Homeopathy for 24 years. Keep moving your body as best you can--don't let your muscles atrophy if you can help it at all.

Sorry to go on, but as I said, I despise this disease! Some interesting factoids--it seems the further north one goes, the more common the diagnosis. They think the amount of fish eaten somehow influences the incidence of MS. Methinks that might be why you have such a strong MS support system up there. The incidence of MS in coastal states is the lowest in states like Alabama, Louisiana, Florida, etc. There are a lot of theories, and they all sound plausible, but I'm sure they don't mean much right now, just give you something to give you back your life NOW, right?

If you have a regular email addy, I will be happy to email anything I can find that might help you, Sweetie. My heart hurts for you (and dear Laura, too!) and I will do anything in my power to help you through this.

BillH · 03-25-2008, 12:45 PM

Trish:

Don't know you and I'm so new you don't know me, but I keep you in my prayers, that you can have the strength and determination to hang in there, even when the system and everything else seems to be frustrating. We have a young mom with MS who comes to church most every Sunday. Her courage is more a sermon than any words I share with my congregation. God bless you, Trish. I hope you feel the care from all who've written and all who are by your side.
BillH

KittyKay · 07-04-2008, 03:41 PM

I too have MS and have had it for a few years yet got diagnosed Feb.07. Did you have Gastric Bypass? Do you think your MS was affected by your surgery?

Kitty