Sunday, October 18, 2009
Why I Do Not See Neurologists Anymore.
I see no neurologists now which seems to be much better for my well being.
Going to the appointments got me totally stressed; do not know why now as they never told me much.
Neither had much care for me as a human being, the first neurologist Dr Tiessens, at the OLVG had a terrible manner, he told Richie and I, that I had PPMS and within 5 minutes we were stood back out in the corridor.
This was after waiting over one and a half hours, to see a highly trained doctor, who could not talk, nor could he be bothered to read up on my history before our appointment.
He actually used half of our 5 minutes, with him to skim through my file and look at the MRI results, and then in the remaining 2 ½ minutes to tell me his diagnosis, and no more.
The neurologists I saw were from two of Amsterdam's biggest hospitals, the OLVG (Onze Lieven Vrouwen Gasthuis) and a well known teaching hospital; the VUMC (Vrije Universiteits Medisch Centrum, Amsterdam).
The second opinion neurologist was Dr. Professor Polman, from the VUMC, one of the leading world experts on MS.
It took ages, about a year to get his second opinion and then he told me that it was clear that I had abit of MS, this when I was already fulltime in a wheelchair, a year after diagnosis.
Dr Polman, though, had taken the time to read up on my notes, unlike Dr. Tiessens who did that once you actually saw him.
Neither of these had a prognosis or treatment plan for me, neither felt willing nor it seemed able to even give an opinion or any suggestions.
I stopped going after Dr Tiessens, from the OLVG, asked me how come I managed to get so quickly into a wheelchair.
Later I was told this was a joke, shame he did not smile at any point, nor explained that it was a joke, when I got very upset at his greeting.
My GP is more helpful and will research and ask neurologists for their views on pain relief and baclofen dosage.
She confirmed for me that THC is the best pain relief for MS, especially for PPMS, (Primary Progressive Multiple Sclerosis).
I use baclofen for spasms and self medicate with THC and have a good diet and exercise every day.
I do 30 minutes arm exercises daily and use a Motomed for legs, also daily for 39 minutes.
My advice is in possible get one as they are very good.
My diet is very good; I eat a varied diet, with lots of fresh vegetables and fruit, nuts, seeds, everyday.
Lots of fresh Tofu and Tempe from the Asian shop, they make it themselves.
Regular fish, especially fatty fish like herring and mackerel and smoked eel, as well as tins of sardines and anchovy, very occasionally.
Freeh pasta, Richie makes it; he makes lasagne, cannelloni, ravioli, and tagliatelli.
He makes great stews, casseroles and soups and curries and cous cous
We eat no processed food, apart from the occasional tin of sardines or anchovy and jar of roll mops herring all fresh food is bought on the market.
Soya products and some pulses from Asian shop, rice and Asian/Caribbean vegetables/fruit from the Indian shop and soft goat cheese and olives and some fruit and vegetables, if needed from our friendly Turkish shop.
Sometimes when Richie wants a break from making bread he gets bread from an excellent Moroccan baker, who is just up the road.
Richie uses thick coconut cream in place of dairy cream, he makes delicious ice cream and custards.
He also uses fresh herbs in place of dried herbs where possible and available, he grows his own, and has indoor thyme on the kitchen windowsill all year around.
Bread is made with a mixture of whole wheat and brown and white flour plus oats and linseed, linseed is also added to cooked food.
Love avocados and mangos and bananas which we have regularly, daily in the summer.
Think that my/our daily vitamin and mineral intake is very good.