Hi Everyone, I'm Carole

[CaroleL]

4 years ago I had a "fake stroke" and had a partial paralysis on left side of body. I was paralyzed for about 3 months. No signs of stroke were found and doc told me to calm my nerves.

About 2 years ago, I was making coffee when my lower body gave out on me. I asked my family doctor to test me for MS because 2 of my uncles had it. He told me he would take a blood test. It turned out that I had a herniated disk but that has been healed.

It's 2 years later and I'm still not walking. I am wheelchair bound and in constant pain.

The Sports Medicine Doctor I've been seeing got my last MRI results on Monday. The MRI showed nothing abnormal except for degeneration of discs and arthritis.

I started bawling! I wanted a reason, a good one, to explain my pain and lack of mobility. I was expecting them to find a cracked bone somewhere, or maybe a dislocated pelvis.

He told me that I have many symptoms of MS. For a moment, I was happy. I finally had an answer.

I came home and started surfing the Internet and getting more information. Popping out on the screen was my life story. It explained so much. My lifelong ailments were...well.. Justified! Not in my head.

I've switched doctors a few times because they refused to listen and kept telling me some symptoms were impossible and probably my imagination.

I'm somewhat still in shock, my crying bouts give way to bouts of laughter, anger. I feel that if I had been tested when I asked, I'd have received treatment and maybe I would still be able to walk.

I've now been referred to a neurologist but I'm told that there is a waiting list of 7-9 months.

It seems like it may take awhile for anything to be done. I still hold on to the dream of walking. I don't know if its even possible.

Sorry to go on for so long. I'm happy to have found this site. I do have much to learn.

[MariaMySister]

It is possible to walk again and your not crazy. When we have something traumatic enough that it changes our lives, we need answers. Have you had an MRI of your spine as well? ...wouldn't hurt. Listen to your body. If doctors don't give you answers, find your own. There is a whole world of support out there, many of whom are undiagnosed. Don't give up hope of answers. One if my biggest mistakes was that I didn't push my concerns enough at doctors visits because I felt like a hypocondriac by then, but we KNOW something's wrong with us...hope you find your answers and luck to you!

[CaroleL]

Maria, thanks for your reply.

I just got results from spinal MRI and they were fairly normal. The doctor (sports med) said that my problem was neurological and that I had many symptoms, and he believed I have MS.

He referred me to a neurologist to confirm his clinical diagnosis but I won't get to see him for about 9 months.

It's my family doctor that I unofficially fired. I'm currently looking for another. He is the one who refused to properly investigate.

I've been getting worse the last month and have to rely on Internet, like this site, to get any information.

I'm so glad you are all here, thank you.

[Cat Mom]

Hi Carole, you MUST live in Canada (9 months to see a neuro)... I'm sorry that you are suffering so much and can't get answers sooner. I hope you find this site to be a good source of information and compassionate understanding.
Jen

[CaroleL]

Thank you CatMom. Indeed, I'm in Canada and the wait is terrible.

I may end up going into emergency,I'm having electric shocks on the right side of my head. This just started, but I've been having shocks to the tailbone for about 3 days and it really hurts.

It would get me to see someone faster, but the main reason is to get rid of these shocks ASAP.

[tellnhelen]

Hi Carole. Sorry for your trouble. Of course Im not a doc but I can guess Have you ever heard of "Guillian Barre" syndrome. Have a friend who recovered from sxs that sounds like yours. Check it...just for something to do

[CaroleL]

Thank you Tellenhellen. I had a look and I must say that many symptoms are similar to MS.

As I was checking certain symptoms, everything still brings me back to MS.

My family has a history of both MS and Lupus. Autoimmune diseases have so many things in common that its no wonder even doctors are confused.

[dpmich]

Hi Carole

I suggested that you come here. It is a great community of very supportive people. There is so much info to be gleaned. It seems to me that going into the ER may be the right move. Explain about the electric shocks. Hopefully a Neuro will be brought in for you and maybe steroid infusions. That might also get you an "In" to a Neuro. Make sure the one you do go to understands and treats MS patients.

DP

[HellsBells1]

Hi Carole,

I am also in Canada (Vanc. Island) and my GP referred me to a neurologist and I had a 5 month wait. But a few days after I got my appt. booked with neuro, I developed a new sx of myoclonic jerking and went to the closest ER, who wrote to my GP and said I needed to see a neurologist sooner.

Unfortunately, GP was on vacation, had a replacement "god-complex" doc, who told me it was in my head, and would not even refill the prescription the ER doc gave me. So we drove 3 hours to Victoria to go to ER there, and WHAM, got into see the head of neurology for the entire island within 2 weeks based on the ER doc's neurological consult with him while I was being treated.

I suggest a visit to the ER, rather than waiting 9 months, but I would go prepared with a very full list of "new" sx that need investigation (even if some of them are not that new). They might do an MRI of your brain right in the hospital.

Good luck.

[CaroleL]

I've been to the ER! The doctor called the hospital neurology dept and told them that the wait was unacceptable. I've since been put on a triage list and should hear from Neurologist within a week or two.

dpmich

I could not thank you more for referring me to this site. This has been lifeline for me. Hugs and kisses!!!!

[dpmich]

oh it's great that you have a Dr speaking up for you! Remember him and keep his name in your mind/files. I'm glad you are using the site, it was a Godsend to me as well!

[MSer102]

Hi Carole! I was wondering what could explain your neglectful medical care until I read that you live in Canada and your relying on the government medical system. My aunt lives in Ontario and many years ago she was having a lot of trouble getting good medical care for her abdominal and urinary problems. Finally she just came to the US and saw some specialists as a private pay patient. She didn't have to wait very long for appointments and her problems were under control within a few months. Her doctors in Canada were able to take care of her after that.

Have you thought about that? Can you beg and borrow money from your family to see specialists as a private pay patient? Even the big centers in the US like the Mayo Clinic and Johns Hopkins have waits of a few months but they're WAY faster than 9 months! University medical centers usually only take a couple of months for an appointment in the US. The last time I went to one I got in in only two weeks. Is there a way for you to go to another part of the country and be seen sooner? Is there a way to be seen sooner as a private pay patient?

[HellsBells1]

As Carole has stated, once she saw an ER doc that felt her case was of a more urgent nature, they put her on an urgent triage list... so she will see a neurologist within a matter of weeks without having to pay anything.

As a Canadian, I agree that we wait a long time for many things from appointments with specialists to certain types of tests (such as MRIs). BUT, if your immediate health is in jeopardy, or you present with something potentially life threatening, you will be treated (for free) immediately in an ER, admitted to hospital for testing, or get on a rush/urgent list for testing. People don't die anymore in Canada because of waiting for an appointment than in the U.S. At least we don't have to pay.

Although it is frustrating waiting, these waits are for non-life-threatening issues. And, if an illness is causing a major impact on your quality of life, such as MS with Carole, you can get expedited. I went from a 5 month wait to a 10 day wait, when the severity of my sx was recognized at the ER.

[MSer102]

I guess in the US we're a bit spoiled because we always have the option to go outside of our medical insurance - if we can afford it.

I know this happens in the US too but it sounds like the medical system in Canada forces people to wait until things turn into emergencies before something gets done. So its good that Carole saw a doctor who is trying to expedite her neuro referral except that she's been waiting for 4 years to get to this point and she had to go to the ER when she couldn't stand it anymore and all the doctor could do is put her on a triage list so she can maybe see a neuro in a few more weeks. So that made me wonder if the fact that Carole won't have to pay makes up for the last 4 years. For my aunt in Ontario it sure didn't.

So I'm feeling so bad for Carole and it made me think of what my aunt had to do to get her medical problems taken care of. So I was wondering if she had a way to try what my aunt did and maybe she could see the right specialist within a couple of weeks or a couple of months instead of having to wait another year. I know I'd have gone out of my mind already if I had to wait 4 years for help only to be told I had to wait almost another year! Even if it was free.

[HellsBells1]

Oh, we do have the option to pay outside the system in Canada as well.

We can pay for MRIs and be seen in a day, with the results going to our doctor or specialist. We can also go to private clinics and be seen by doctors right away. The problem is we have become so used to not having to pay, that most of us don't even explore those options, or aren't even aware they exist.

There is a private clinic in Vancouver that specializes in MS, and also provides the only CCSVI treatment in the country (that I know of). I paid for my last MRI, because all the other tests and my neurologist appointment were minimal wait (10 days to one month) but the MRI equipment available on the island was going to be a longer wait, so I went to Vancouver and paid $875 for my MRI. Most Canadians are not willing to pay, or are not able.