Frustrated with Hemo and Neurologist.....

[Leigha]

Haven't posted my results with both doctors as was vastly disappointed and needed to just sit with it all for awhile. Now guess need to vent! Neurologist, who have been with only 2 years, is telling me he doubts I have had tia's - yet alone stroke! - and that it is all migraine related. I know the truth and he gives me the correct medicine, for that I am thankful. Too many neuros like to over-medicate and so I stay with him. I did give him my mri's from past years and he didn't even want to look at them or keep them for his records, but I placed them in his hand so he had to. Augh, we can't win.

My hematologist took a complete turn around and was rather cold with me which surprised me. Is ordering complete blood work up and I return in 2 months. She acknowledges my APS and also the complicated factors in my case, but she is training a new doctor (who was with her) and I believe because she didn't have the answers she just decided to become arrogant.

Both doctors said my 'case' is complicated. Ok, but not knowing the answers does not give them the right to act arrogant. It is a rare doctor who can remain humble these days. No, I cannot go to London, I'm here in Michigan. Wish I could!!

Thanks for letting me vent, feels better already. We don't have a heart valve which can be replaced or a broken bone which can be set; ours is a complicated syndrome which involves so many aspects of our bodies. Most doctors, it seems, are trained to deny anything which they cannot easily see a cure/answer for. And we, the ones suffering, must carry a double burden. The doctors arrogance/ignorance and our illness.

[jessielou]

Hi hon,

So sorry to hear how you've been treated, that's just it they don't know the answers, so pass their inadequacys onto us, by being arrogant and rude, they make you wanna spit!

As if we don't have enough s##t to deal with! I know it's hard, but as my nan used to say, "don't let the bu####s grind you down!!!"

Thankfully you are being given meds and further tests been done!!

I hope as word spreads, things will get easier for us all! Sadly we all know it's going to take time,

Hope you feel better soon hon,

Take care gentle hugs love Sheena xxxxx

[MaryF Administrator]

Hi there, others on here in the USA may have some pointers for you, sorry things are tricky currently. Have you looked further down the page here of blogs and seen the latest blog from Professor Hughes, do please consider printing this out, plus the papers on seronegative Hughes, which are on the HSF website, let us know if you need more help, sometimes it is gentle and firm education, which is what I have had to do to for myself and other family members! Mary F x

[Leigha]

Thanks Mary and Jessie. From past doctors, lab tests, and my own research, I know where I stand. I test positive. Have read latest blog from Prof. Hughes, he is absolutely awesome and his outlook (and expertise) may help change what is known and being done..... let's hope! I do disagree with the doctors, but have to be careful for they will dismiss me, literally. (have been refused to be seen!) So am glad to have this group for many reasons.

Take care and hooray for the Olympics.... what a show last night!!

[Manofmendip]

Hi Leigha

I had the same trouble with two neurologists, they both refused to accept that I am having mini TIAs, even though Prof Hughes says that I am, and they both said that I was having atypical migraines. I've had enough migraine to know that the 'funny turns' that I am having are not that I converted from Warfarin onto Fragmin and I've had fewer 'funny turns', which is what Prof Hughes expected to happen.

Good luck and best wishes.

Dave

[Leigha in reply to Manofmendip]

Hi Dave

My MRI showed the damage which many tia's have left and as interpreted by past neurologists. However, it does come down to each neuro we deal with, doesn't it? You are so fortunate to have Prof. Hughes. I do much research on my own and do my best to get the doctors who will give me the meds I feel I need; that's the best am able to achieve at this point.

Thanks for the good wishes and the same to you.

Leigha

[Manofmendip]

Thanks Leigha

Where are you from?

Dave

[Leigha in reply to Manofmendip]

I live in the States, in Michigan. Have been to Britain a number of times, all very fond memories. What part do you live in?

[Manofmendip]

In the Mendip Hills, south of Bristol & Bath, so in the West Country.

[Leigha in reply to Manofmendip]

I've been to the Isle of Wight, but that's as far SW as have traveled. My grandfather was born in Birmingham.... quite a, ahem, few years ago. Used to be pretty comfortable with walking in London and driving more through the North, but it's been a long time.

Have you ever been to the States?

[Manofmendip]

Hi Leigha

I've replied with a PM.

Best wishes.

Dave