todays appointment/neuro dilema

[olly]

well,today i went to my neuro rehab appointment at 2.40pm.
it was a women doctor i have seen before and dont like much.........again she was wanting to stop my zopiclone sleep med.
as before she said there not for long term use (tough,been on them about 8yrs)and that you can build up a tolerance to them(told her not applicable)
if i dont take my sleep med i dont sleep .....period!
i wanted to discuss so many things like the mitochondrial disease and about my speech which is becoming more stumbling but felt like i could not talk to her.
i asked her which neuro has been appointed to take over mine of over a decade who retired last year.............she did not know.
i dont want to see any old tom,dick or harry.............i want someone i can trust and like like i did with my old one proffessor al-din.

there was a young neuro i saw at the rehab clinic back in early 1997 at thr neuro rehab clinic.
he did a very detailed clinical exam and diagnosed the hypotonia in my left lower leg.
he was very very kind and nice..........liked him alot .
proff al-din later told me he had just qualified and had been training under him..........said this young neuro was very good.
but i can not remember his name or know if he is still at my hospital.

my gp may be able to find out,will have to make an appointment.

 

[Zaphoon]

It's a real bummer when you lose a good neurologist! I wish you the best of luck at finding one you like and trust!

 

[Alyoop]

I remember you saying your trusted neuro had retired and wondered how you would get on at your next apt. It's important to trust and find someone you get along with. Someone will no the other chaps name. I would ring the outpatients clinic at the hospital, if you get a civil sounding receptionist they may remember him?

And hang on to the zopliclone. Sleep is just way too important to help get through the day. Good on you for sticking up for yourself. I bet you do it well? My mums been on it for years like you, and it helps her sleeping immensely. You the saying......if it ain't broke, don't fix it

 

[olly]

thanks kim and aly.

aly,i would have fought her for it lol.
my gp should be able to find out i think,i can usually talk to him about things unless i catch him on a bad day.

i was wieghed and told i put on 2lb.............whoopee,only about another 20lb and i,ll be at my ideal wieght..........thats if i dont die from high cholestorel before then!

 

[Alyoop]

Wouldnt it be great if I could just pass you my fat and we could somehow meet in the middle

 

[AKmom]

Caroline, I know how you feel when you loose a good doc. Hope one comes up again for you soon so you can get your questions answered. Hang in there dear one!

 

[Alyoop]

Wish I could share my new Doc with Yall. hes a hun thats for sure

 

[olly]

goshthanks you two.
i'll get it sorted out eventually,not like theres any hurry.
thinking about the mito diseases again and its just bugging the hell out of me,i have such a hunch about this i feel like quasimodo:lol:

my speech is very slowly getting worse,its not all the time but getting more ofton.
i get slurred speech when fatigued but this is different.
sometimes its like a definate stutter,like my brain and mouth are not in sync.
but i would say i stummble my words alot and they dont come out right.
yesterday was talking to son and he was repeating my words,i said my nieces name ruby.......he said,ruby.........i said i did..........he said no you did not.
sometimes i feel like strangling him.

my mum had her hearing test yesterday,they said it was very abnormal and she has to go back to gp for results.
neuronal hearing loss is the type you get in mito disease ............intresting to know if it is.
oh well,onwards and upwards

 

[Ms. Pie]

I hope you find a Neuro you are comfortable with soon! That's so important. I finally got a great one. He's young and caring and has MS. His diagnosis is what caused him decide to be a Neurologist! Good luck Caroline!

 

[LordJohn]

Sorry to hear about worsening of speech problems. Presumably you won the sleep medicine argument, if it still works for you then why stop taking it. Hope my neuro when I meet him is caring and considerate, good luck in finding a good one!

 

[olly]

thanks misspie and lordjohn.
i know which neuro i want ,just dont know his name or if he is still at my local hospital.
i am the type of person who will suffer in silence and wont go to hospital if i dont feel comfortable with a doctor.
i hate the rehab clinic and dont go as ofton as i should.
i like to be left alone to get on with things,i can manage this disease without interference...........as long as i have my meds and know my limitations.

 

[momofsixkids60]

I know ho hard it is 2 fimd a dr. Muy childrrm's pediatroc neuro hjjad beem treatimg 4 of mu childrem; and we swa him 1 dau & ntjhe next dau the offive calld & left a medsage 4 me 2 call baxk. I figuerd he wsa takimg a trio 2 Germany (his wifr wsa from Germanu) so I didm't bothre 2 return the call. Wjen I did secersl daus latre, the offive ,managre told me he hjad died. I wsa horrified
! He died im his sleep tje night aftre we hjad seem him. I cried 4 2 weels. He had beem my kids dr 4 ovre 10 yrs. He was more like fanilu!

Good luck on findimf that dr. Knock om every dooor if U jhave 2.