[trixlynn]

Hi,
My name is Tracy and I live in beautiful BC, Canada.

On Feb 1, 2015. I started having pain and loss of vision in my right eye. This began a series of appointments with opthalmologists, neurologists and my GP.

I have been diagnosed with Optic Neuritis, and probable MS.

I have previously had Thoracic Outlet Syndrome, and bilateral rib resections.
My GP blames everything on fibromyalgia, and says there is no pain in MS.

So far I have had a VEP, but have not received the results yet. I am waiting for the hospital to schedule an MRI.

I am frustrated and at a loss.
Since the ON started I have had a few other things crop up. I am not sure what to do.

My Dr and I get along really well, but we disagree on quite a few things. (No suggestions to get a new GP, it is impossible here)

I have been treated for years for bladder retention, by having my urethra dialted. That, however doesn't help and doesn't address the leakage isuues. I also recently developed sporadic bowel leakage as well.

Now, I have ON symptoms in my left eye as well as my right. I went through three or four days of balance issues. I have fallen several times. ( Mostly up stairs) I have developed tingling from my waist down, in the tip of my tounge, my lips and fingertips.

I get bad spasms in my back, calves and feet.

I am exhausted, I'm in bed 11 hours a night. I get up 5 times a night to pee. The spasms wake me up. Arghh.

I don't want to go to my GP, he blames everything on fibro. Since I have a long pain history and have experience in the medical field, I am in danger of being labeled as having "Facticious Disorder".

The problem is, until I have my MRI I can't get into see my neuro.

Needed to get this off my chest.
Sorry for the long first post.
Tracy

[trixlynn]

I just got off the phone with my opthalmologist. He got the results of my vep, and says they are very concerning. There are abnormalities in both eyes.
He wants to see me on Tuesday for more tests.
Now I am supposed to call the neuro.
Wish me luck.
Tracy

[SallyC]

Welcome Tracy.. So nice to have you with us. I agree, call your Neuro
for a reading and evaluation of your MRI. Your symptoms are screaming
MS or something similar.

Good luck and please let us know. We are with you all the way.

Where is everybody????

[NurseNancy]

hi tracy and welcome to NT,

going thru this diagnostic process can be very stressful. i remember when it was happening to me.
try to take one test and one day at a time. if you have a friend or family member who can go to dr visits with you get a buddy for a 2nd set of ears.

for me, to more information i got (even the dx of MS) the more power i had. the more control i got. if that makes any sense.

it sounds like your drs are doing everything they can and are taking you seriously. hang in there and keep us posted. we're here for you.

[trixlynn]

I just got off the phone with my neuro. He wants to see me asap. The next available appointment is June 15. Yes, in Canada that is asap.
Tracy

[Kitty]

Hi Tracy. Welcome to NeuroTalk.

I'd like to inform your GP that yes, there is pain with MS. Not constant pain but some of the symptoms are uncomfortable.

My MS started out with Optic Neuritis, too.

I'm sorry you have to wait so long to see the Neuro. There's another member here from Canada and I remember her talking about how long the wait is sometimes......even for urgent needs.

[CarolM]

Welcome Tracy. I'm also in BC. If things get really bad, you can sometimes bypass the wait by going to Emergency. I wouldn't wait around if my eyesight was affected, especially the second eye. There should be a neuro on call that the ER Dr. can call for advice.

Does your neuro know how long it is until you can get an appt? Sometimes they don't make it clear to the receptionist and have no idea. Have you asked for a cancellation? My friend recently had an MRI booked in 5 days - apparently GP's can book MRI's now; at least for some issues. He put hers down as urgent and the hospital called the next day.

Carol

[Debbie D]

Welcome, Tracy...sorry you qualify for our little group...

I like the above suggestion to either call to get in on a cancelled appointment or go to the ER. Do they want you driving around with poor vision? Heaven's sake, yours seems to be an acute situation.

Keep a symptom journal, and can you bring someone with you to your doc appointments? Two sets of ears are always helpful.

Good luck, and keep us informed...

[barb02]

Hi Tracy,

I am sorry you are going through this.

It must be so frustrating to have to wait so long to see a neuro.

I think the offers have offered some good advice. Take care.

[Starznight]

Hi Tracy, sorry you're having issues with the GP, but hopefully your neuro will help you out more. You can however tell your GP he's welcome to send me a letter if he wants to know about a case of pain (constant and chronic) in an MS patient. (I'm currently on 3 different muscle relaxants and still have chronic muscle spasms that are quite painful)

But even though I'm in America the doctors here can be ill-informed too. I call our local hospital Camden Malpractice Center, as does most of the locals. And it's quite fitting, was told I had carpal tunnel syndrome once when a horse pinned my hand backwards against the stable wall. They didn't even take an x-Ray and the hand looked like a purple Mickey mouse glove. Left the hospital, went out to the car managed to catch the hand in the steering wheel well enough to 'relocate' the dislocated wrist and made myself a pseudo cast from an old wrist splint and some vet wrap.

Needless to say I laughed heartily when they sent me the $800.00 bill from the ER and called offering to pay them in Monopoly money, which was still more 'real' than the medical care I received from their doctor. Funny the bill was never sent out again

But I digress, as Nancy said, getting a dx can be quite the uphill challenge. I'm not sure how Canada works, but I would think you should still be able to get a copy of your records. I would definitely ask about it, if nothing else try the whole, I'm going out of the country and I'm not sure if they'll be able to access the records, what if I forget if I'm allergic to penicillin???