No hope

[Geekerbell]

Carole,

I am so sad to read this. Others have already given very good advice. Since I am still very new in the diagnosis journey, I really don't have much more to offer. I just wanted you to know that I am thinking about you and hope you are able to push forward and get answers.

[minnie76]

Hi Carole,

Fellow Canuck here! I live west of Toronto. Just wanted to say that I'm thinking of you, and hope you get some answers soon!
I hope you end up going to the appointment...but you're right, the doctors office would call you if they needed to in an emergency situation...if they can diagnose base on the MRI alone they'd call....however if you don't go to the appointment and they want to do further test...you may not know. Have you ever had a spine MRI or LP?

Take care, and sending you many hugs!!

Minnie76

[CaroleL]

I didn't go!

I didn't go to my appointment today. My daughter called and rescheduled the appointment for next week, hoping the MRI results will change Dr. Monster's attitude.

Shortly after, I received a call from GP to say that my MRI results came back normal.

I'm not happy at all! If they can't find the problem, they can't fix it!

I imagine I'll have to face the wrath of Dr. Monster in the hope that she can order an MRI of the neck.

The Spinal MRI showed a multitude of "little problems" but to my knowledge didn't mention lesions. At that point, we were looking at "bone" problems to explain why I can't walk and have such excruciating pain ... For two years! MS was in nobody's mind yet.

Should possible MS be written on a requisition for them to look out for lesions?

Thank you all for your concern and your posts.

[Cat Mom]

Hi Carole, only here can you say to someone, "I'm sorry that you don't have lesions" but we all understand your frustration. It must be terrifying to not know and not be able to treat it. My heart truly goes out to you.
Jen

[lusciousleaves]

Carole, I'm sending you a skype under my LL account. I have so much to say on this topic, and not all of it can be said here.

[minnie76]

Hi Carole,

Totally understand your frustration! Mine has a few lesions but not "MS LIKE". So I'm going for a spine MRI
I can't with certainty tell you if they need to put Rule out MS on the spine MRI. All I can say is that I'm seeing an MS specialist, and when he ordered mine, he wrote
"Complete Spine".
No mension of lesions at all. I think for the brain MRI they need to put the "MS protocal" cause they have different slices that they can do...

Take care,
Minnie76

[polopuppy]

Hi Carole,

I am so sorry that the MRI came back normal and that you are left without answers. As far as the spinal MRI goes, the requesting physician does not need to indicate what is being ruled in or out. It is the radiologist's job to examine the MRI and report any abnormalities they see, including lesions.

You obviously have something very wrong with you so now it will be up to the neurologist to figure out what that is. I have serious neurological issues but it does not appear to be MS. In my case, I have brain and brain stem lesions along with a positive LP. Some of the best neurologists in my state can not diagnose what is causing my issues but they all agree it is not MS.

I have come to accept that I may never know what is wrong with me. This is made easier by the fact that I am still given treatment without a diagnosis. I started IVIG almost 2 years ago with wonderful results. I had my first relapse, in December, after 20 good months. I was having relapses every 3 months or so prior to that.

Some of your symptoms do not seem consistent with MS so maybe other neurological diseases need to be entertained. There are so many out there that it can cause one's head to spin. Have you ever been worked up for a metabolic disease? People are born with these diseases but will not show symptoms until the 4th or 5th decade of life. Have movement disorders been looked at? What about Parkinson's disease?

Again, I would bring an advocate with you to your next neuro appointment. Don't see the monster without someone to back you up. Good luck. I will thinking of you.

[CaroleL]

Thank you all for you responses,

I've yet to contemplate my next move. The doctor gave me some new meds, and I seem to be in a constant buzzed state. I'm not thinking straight.

I did see my optometrist on Friday and she ruled out Optic Neuritis, although she is scheduling me for a vision field test.

I was also visited by someone, I don't remember her title or company, about the home visits. I will have 2 visits weekly, for sponge baths, and upkeep of my living quarters. That's the upstairs of my house where I'm confined to.

I'm on so many meds now that my hubby is as confused as I am. Well be getting the pharmacy to bubble pack.

I'm needing more help to transfer in and out of WC but that's because I'm too drugged I think.

I wish I could be admitted to hospital, have all test done, then sent home with something official as well as a good doc to follow up with. Just fix me!

[suziq38]

Ms is is really hard to diagnose.
If I were you, I would try a teaching hospital, with doctors that specialize in MS.
I would also consult with a rehabilitation center. This may be out of town, but check in with them. They deal with the after affects of strokes, MS, spinal cord injuries, accidents, sports injuries, etc. Basically PT.

Maybe they can try braces on your legs.

Have you had a full MRI? (Cervical, thoracic, and lumbar regions of your spine?) Have you had the brain MRI? The blood tests, the eye and nerve tests?

[CaroleL]

So far I've had a spine and brain MRI and I've had an eye exam with my regular optometrist. Our area hospitals are now all called the Ottawa hospital with their Names being called campuses. They're all teaching hospitals.

I'm so buzzed that I have to rely on my daughter to make my arrangements. Hubby doesn't hear well and doesn't understand English that well. DD runs her own business and has three children, including a 2 month old.

Now tha home care is organized we're likely to get back in the arena and look for a Neuro.

[CaroleL]

Lusciousleaves, I've just only managed to get into my Skype account. I'd forgotten my password! I've just added you as contact. You can reach me anytime that's convenient for you.

[Whimpurr]

I have nothing to add, Carole, just wanted to give you some virtual (((HUGS)))!!!

[maitrimama]

Carole -I can only imagine the frustration, and inevitable depression (sadness, anger & hopelessness) that you are feeling. I have been there. In another time and another place, under different circumstances but hopeless nonetheless.

I am an intensely private (non-trusting) person but I did share that with my ex (we were in the process of divorce at the time) and he told me it was okay if I was hopeless for a bit because he was going to be hopeful for me.

So I am offering you a little bit of what hope I have. That's what it is all about in the end, isn't it? -M

[CaroleL]

Thank you all so much!

I really am thankful that I have all of you! All these virtual hugs really do touch the heart.

[lusciousleaves]

Carole, my PMs aren't going through for some reason. They're all hanging. Not sure what's wrong with this new Skype update, but I'm reverting to the old version.