MS Clinic Appointment tomorrow.

[nyangel60]

So the MS clinic which is 2 hours away from me will be seeing me tomorrow. They had told me last November they would not see me again as my PCP should consider APS as I tested positive for antiphospholipid antibodies. The hematologist refuses to put me on an anticoagulant saying he will only do so after a thrombotic incident which if I do have one can prove to be fatal. How reassuring!!! After refusing to be dismissed by another doc he promised to get me a new neuro and a doc who specializes in blood clots.  I have not heard from them about any appointments for either.

Truthfully, I am so indifferent to all that's happening. It's like I have given up as there is not an agreement among all the docs I have seen as to what is really wrong with me. I found out that sometimes it is almost impossible to differentiate between both conditions as the presentation is similar when it comes to lesions and clinical symptoms. The main difference is Obands in the CSF favors MS and I did have Obands. The thing is I could have both conditions.

I feel like a robot. I am not even looking forward to the appointment as previous appointments have been brief and I only saw the neuro once and the other 2 times the NP and an intern. I am thinking maybe I should print out my findings from the NIH about the differences between MS and APS and show it to the neuro or NP. What do you think? Thanks for reading and I hope I will get some responses.

Dee

[kwarendorf]

I forgot to ask, were the o-bands found in your CSF unique to your CSF? This means that there are o-bands in your CSF but not in the blood sample taken at the time of your LP.

If the o-bands were unique to your CSF, they would provide confirming evidence for other MS diagnostic data. THis includes MRI, other blood tests and most importantly the clinical exam.

All by themselves o-bands don't indicate MS.

[kwarendorf]

I would agree that bringing in material from the NIH is a bad idea. You would likely be dismissed if you try to educate the doctor.

If you are seeing the neurologist, focus on things neurological. Discussion of hematology, APS and thrombotic episodes will also likel'y get you dismissed.

Focus on neurological symtoms. Talk about the top 4-5 symtoms in terms of how they impact you day to day life. Bring copies of all the test results you can gather.

If he asks for them you can provide them. If he doesn't, don't try and force them on him. If you give them to him upfront he may spend a significan't portion of your appointment reading through them.

Prepare a list of questions. If by the end of the appointment he hasn't answered them ask them.

You want to be prepared but give him a chance to to his job :-)

Kyle

[HVAC]

I hear you it took over 40 years from my first MS attack to be diagnosed with MS. It took two years to be diagnosed with Cancer. What I said to my doctor was "Something is terribly wrong with me I do not know what it is but something is really wrong".

Alex

[nyangel60]

Thanks Alex. I totally understand but I have been so quiet and in the end just brushed aside. I am just tired as I am not a doc and I cannot diagnose and treat myself and so far no one is giving me a firm answer except the neuro in Florida who said it was MS. I live in Canada.

[HVAC]

The NIH thing might just make them defensive and you won't get a diagnosis if you make them defensive.

I know you want to know diagnosis. I would if I were you.

Alex