before your diagnosis

[monica9679]

During and before the testing phases did your doctor tell you what he thought you had. Did you know what the doctor was trying to eliminate before the ms diagnosis.
Just curious
Thanks!

[gymbuff]

Hi Monica

No one told me anything prior to the diagnosis but everyone knew what he was looking for except me. Blissfully ignorant. That was 24 years ago and times have changed. I don't believe it should happen in this day and age.

[monica9679]

Thanks gymbuff for responding.
I feel the same, we should know what their thinking. The only indication i have is pseudotumor cerebri. Thats only because i had an eye appointment the same day as neuro and they sent me with a note to give to the optometrist. They wanted him to check for optic neuritis. My eyes are fine at least in thst sense. My vision is great, dont wear glasses but i do have nystagmus and blurriness and eye pain..
I have looked up the pseudotumor and according to the symptoms, im not so sure i have that.. Maybe its just process of elimination.. I dont know. I am impatiently waiting for my lumbar puncture appointment to be setup. I just want to get the ball rolling on things.

[Wendigo]

I remember getting labs to check my B12 level, as if a deficiency could mimic MS. Lyme disease is another thing I think is usually ruled out.

[NHE]

I am impatiently waiting for my lumbar puncture appointment to be setup.

When the doctor tells you to lie down for a while, do so. It's in your best interest. It will help to prevent/minimize the post tap headache.

Also, make sure that they know about the needle bevel orientation.
http://www.thisisms.com/forum/general-d ... ml#p196861


NHE

[monica9679]

Ive definitely heard about b12 and lyme disease.. I cant imagine That i would have lyme disease but who knows

As for lumbar puncture i have definitelt heard that about them, the headache. Something im not looking forward too. I was told to drink alot of caffiene before and after.. Would anyone know if i would be fine taking a migraine pill also?

[Azaeleaprawn]

No one at all told me anything at all (altho' now I know that they knew) prior to the diagnosis (based on brain MRI with lesions).

I was kept totally in the dark even though I had asked my GP if I had MS 3 years prior to my dx - to which she had simply answered "no".

And then, as if that wasn't bad enough, at my dx the neurologist told me that he had pretty well known that I had MS when he saw me two years ago at which time he had me go for a thoracic MRI.
On that MRI, he said during my dx that he thought possibly he had seen a lesion on my spine but he wasn't sure and hadn't bothered to send me for any follow up MRI's to determine what there was. Nice, huh?
I was and am so mad at this lazy callous creep for not following up at the time as I went on for two more years finding walking more difficult to the point that I got a cane and then I started falling before my dxwhich made me lose my confidence for going out by myself.

So now I depend on husband for going out anywhere because I'm just so terrified of falling.
I wish that I had been told sooner as I was walking w/o a cane then and could have gone for more help when my walking& pain got worse.
The whole experience has left me incredibly depressed.

[monica9679]

Thank you for your response Azaelea
Wow! I cant believe he would do that. Anything possibly should be sent for further investigation. I would definitely agree about lazy and callous!! Why be a doctor if you are not going to treat the patients concerns and health with importance.
Its sounds like everyone has had the same experience with the doctors not sharing their thoughts until the end. it sucks.. Would be nice to know what theyre thinking through this process.. Oh well.

[Azaeleaprawn]

monica, at the encouragement of friends and family I have actually written & reported him and his actions to the College of Physicians and Surgeons and they are investigating. So hopefully something positive will come of that so he doesn't pull that kind thing on anyone else.