Sticky Blood-Hughes Syndrome Support
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going to a new neurologist thursday

well i am going to a new nuro on thursday. my APS doctor said i need one that understands APS because he believes i have both APS and MS...

i sent copies of ALL my MRI's that i have had through the years.. I told him that I wanted him to be aquanted with me before he meets me.. I also told him that i have had so many MRI's that if his power goes out he can call me and i will illuminate the way for him....

i explained all the doctors i have been through and for how many years before i diagnosed with APS but now my rhumy doc thinks i have both... i sure do hope i am dealing with just one illness not 2...sigh

14 Replies


I hope that you are only dealing with one illness.

Where are you from?





Ok, good luck.


hi mary..thanks i read all the articles...i am on plavix right now ..was on plaquinal but allergic..went to coumadin but doc feels plavix is better in older adults as he was having a hard time keeping me level with coumadin. i was on copaxon and avenox too before the APS diagnosis. my doctor now believes i have both stated in the reports the MRI are not conclusive because both illnesses reveal "white spots" i will see what the nuro says...i have had a bad "flair" in feb through april has since cleared balance..bad vision ..cognitive off..numbness..weakness...i know this is from overheating in the sun on bad....i will let you know what he says...hopefully i will NOT have to take injections again...sigh


Thank you Mary! I like your library and what you have got there. Kerstin


Yes we are all lucky to have the internet! MaryF


I hope you find the answers you are looking for & only get diagnosed with just one in the end? :(

Let us know how you get on & all the best x


thanks very very tired of going to doctors just to get different onions on my health...sigh


well i went to the nuro and he is 99% sure no MS....but also thinks i don't need to take plavix and a regular aspirin a day should be fine for me..he said with no strokes it isn't necessary to take it...MRI's showed no strokes..he wants to see my APS blood reports before he suggests i am now back to square one...damn


Well that's good then :) on the MS side anyway...

As for not giving you medication because you had no definite stroke etc...not so happy about...don't think you are either are you?!

You need to get to see a proper Hughes consultant hunny....I was on warfarin from the beginning (13 years ago)....then 6 years ago they threatened to take me off it due to confirming I might not have had a 'definite' stroke!! I told them they were not playing 'Russian Roulette' with my life...they went away & agreed!!

Can you be refered to see one or can you see the aps doctor you have been seeing asap to discuss these decisions?

Keep us updated on results & how you are x


Hi happee

I do hear it takes many years to get a diagnosis of MS. You were diagnosed based on "white spots" on your MRI? Who was this original neuro? Is he from a well recognised medical centre? (not that I am trying to offend you in any way..) I have had my own dealings with average Neuros (in fact, several of them). I did not believe everything they used to tell me. I have decent ones at the moment.

Besides MRI, what else did you have to confirm MS if you don't mind me asking this? x


hi could never offend me so never worry about that.. only thing was spot on brain...i did go to ms specialist and she said no..everyone else (nuero) said yes and no... i am now wondering if i even have that bad a case of aps...i have to wait and see....soon maybe soon i will have really thinking of changing doctors...


hi happee..I do not have MS but I can imagine how difficult it must be in your situation.

hope that you will have all the answers which you seek very soon for you. xx


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