My mito/metabolics Docs visit

[Guest guest]

Well all hoping that some of you can make some sense of yesterdays

visit To Dr. Lee for me...'cos I can't...

Husband was with me , (our son) waited in waiting

room..Barts comment this morning was 'all he seemed to want is a

diary of how I have been since I last saw him in August..Asked Bart

loads of questions about my hospitalisation in August and the events

leading up to it...husband told him it was NOT a coma/stroke etc etc

he agrees it was an inflammatory reaction to the renal lots meds...

i asked if they knew a 'label' for me..me thinking of what I have

read eg..MELAS etc...no he wrote down for me they think its an

autosomal recessive nuclear gene...all I could remember was KSS and

its not that he said ..apparently most mitos are on the nuclear

genes...so I am still just a mito/cyto..we discussed the EMG..that

he said did NOT show any myopathy but that the biopsy definitly

showed myopathic changes.I forgot to ask how much of a deficiency

there was in the Complex's but that my spinal cord is affected and

is why I use the wheeelchair ..I do not fit on genes mutations any

known thing so far he said..

I asked for meds for my clonus he suggested baclofen/zanaflex or

dantrium been there done that and no use so asked for neurotonin and

didn't get anywhere with that !!!

He is a lovely man...He asked what stage the Endo testing was at and

so told him I have got to go for the CT scans for adrenals and they

were testing adrenal antibodies..he grinnned at that..what does he

know I don't !!!He came very much to attention when Bart asked if

the scan would show any more gynaegrowths...Talk about cross

questioned about all the masses I have had removed..and the notes he

wrote wow. I told him that my cardiologist was trying to find my

file from 29 years ago with the Consultants notes on my

hyperthyroidism (I have Hashimotos) and anaemia at that time..he

thought that could be of great benefit.my heart problems

are 'classic' for hypertensive damage.

He had a letter from THAT renal chap..I will no longer seeing him

according to Dr. Lee..he was NOT pleased with the renal crowd.( his

face told all about that )Yes I did get sent a copy of the

letter..Dr Lee spent about 20 minutes going over all the

hypertension tests and what I knew and when the problem started etc..

The very fast pulse..that was interesting...He told us , and Bart

did say yes I heard correctly...that he has been testing CFS

patients using muscle/mito biopsys/tests and found he now has more

mito patients who were labelled CFS or as he says does CFS have an

element of Mito as secondary......he tests serotonin on them !?!?!?

I had to have a blood test for that plus liver,and B12..oh sugar

boys and girls that is when we remembered I HAVENT DONE MY B12

INJECTIONS..since I came out of hospital in August...could that be

the cause of my heart arrythmias again...we didn't say anything but

I did stick myself fast when we got home...and yes I do feel a bit

better today...(husband had put all the needles etc up on top of

kitchen cupboard because of grandchildren)will be interesting to see

that test result

So now for all the Saturday braintalk mitochatters who know I'm an

English nutcase Bart and took me out for Supper

after in London..a lovely Italian place and of course this idiot had

to have half a glass of wine..why do public toilets not only not fit

wheelchairs but also not have grab rails...yes my knickers did get

in a knot then I really did fall face first into the taxi

when I stood up for to lift me up into it..yes you have all

seen piccys of our black london taxis...they said it was the wine..I

said it was my mito...

Gillian

[Guest guest]

I've been on a bit of the wine and mito course lately, not

excessively, but I'm not sure if saying the wine or the mito causes

my slips etc. gets more sympathy.

I have a slow heartbeat sometimes, can we average out LOL?

Take care,

RH

>

> Well all hoping that some of you can make some sense of yesterdays

> visit To Dr. Lee for me...'cos I can't...

>

> Husband was with me , (our son) waited in waiting

> room..Barts comment this morning was 'all he seemed to want is a

> diary of how I have been since I last saw him in August..Asked Bart

> loads of questions about my hospitalisation in August and the

events

> leading up to it...husband told him it was NOT a coma/stroke etc

etc

> he agrees it was an inflammatory reaction to the renal lots meds...

> i asked if they knew a 'label' for me..me thinking of what I have

> read eg..MELAS etc...no he wrote down for me they think its an

> autosomal recessive nuclear gene...all I could remember was KSS and

> its not that he said ..apparently most mitos are on the nuclear

> genes...so I am still just a mito/cyto..we discussed the EMG..that

> he said did NOT show any myopathy but that the biopsy definitly

> showed myopathic changes.I forgot to ask how much of a deficiency

> there was in the Complex's but that my spinal cord is affected and

> is why I use the wheeelchair ..I do not fit on genes mutations any

> known thing so far he said..

>

> I asked for meds for my clonus he suggested baclofen/zanaflex or

> dantrium been there done that and no use so asked for neurotonin

and

> didn't get anywhere with that !!!

>

> He is a lovely man...He asked what stage the Endo testing was at

and

> so told him I have got to go for the CT scans for adrenals and they

> were testing adrenal antibodies..he grinnned at that..what does he

> know I don't !!!He came very much to attention when Bart asked if

> the scan would show any more gynaegrowths...Talk about cross

> questioned about all the masses I have had removed..and the notes

he

> wrote wow. I told him that my cardiologist was trying to find my

> file from 29 years ago with the Consultants notes on my

> hyperthyroidism (I have Hashimotos) and anaemia at that time..he

> thought that could be of great benefit.my heart problems

> are 'classic' for hypertensive damage.

>

> He had a letter from THAT renal chap..I will no longer seeing him

> according to Dr. Lee..he was NOT pleased with the renal crowd.( his

> face told all about that )Yes I did get sent a copy of the

> letter..Dr Lee spent about 20 minutes going over all the

> hypertension tests and what I knew and when the problem started

etc..

>

> The very fast pulse..that was interesting...He told us , and Bart

> did say yes I heard correctly...that he has been testing CFS

> patients using muscle/mito biopsys/tests and found he now has more

> mito patients who were labelled CFS or as he says does CFS have an

> element of Mito as secondary......he tests serotonin on them !?!?!?

> I had to have a blood test for that plus liver,and B12..oh sugar

> boys and girls that is when we remembered I HAVENT DONE MY B12

> INJECTIONS..since I came out of hospital in August...could that be

> the cause of my heart arrythmias again...we didn't say anything but

> I did stick myself fast when we got home...and yes I do feel a bit

> better today...(husband had put all the needles etc up on top of

> kitchen cupboard because of grandchildren)will be interesting to

see

> that test result

>

> So now for all the Saturday braintalk mitochatters who know I'm an

> English nutcase Bart and took me out for Supper

> after in London..a lovely Italian place and of course this idiot

had

> to have half a glass of wine..why do public toilets not only not

fit

> wheelchairs but also not have grab rails...yes my knickers did get

> in a knot then I really did fall face first into the taxi

> when I stood up for to lift me up into it..yes you have

all

> seen piccys of our black london taxis...they said it was the

wine..I

> said it was my mito...

>

> Gillian