Sunday, October 18, 2009

Why I Do Not See Neurologists Anymore.

Sparrow Hawks.

Red Kites.

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.


Kimberly said...

I understand completely why you don't see a Neurologist. Sounds like my UCLA experience. I continue to see a Neurologist simply because of my O.N. Your diet sounds a lot healthier than mine! LOL. Wish I could come to dinner!

Rain said...

I was getting hungry reading your food list!!! You do eat very well! Wow...that's inspiring too!
Damn frikkin doctors, I have a healthy disdain for them and distrust most of what they have to say, I always get a second and in some cases a third opinion. I have almost as much university time logged as a doctor who goes to medical school, yet I don't have that superiority complex.

Stephany said...

Hi Herrad!

Happy Sunday to you, hope it's been pleasant today.

Great list of foods, avacado is my all time favorite!

I agree doctors can be cold, deliver information that is life changing and walk away, leaving a person on their own to find their way afterward.

You and Richie have done a fine job educating everyone on the MS and life with it, etc.


Herrad said...

Hi Kimberly,
Very much like your UCLA experience.
Our diet is very good I think, forgot to add that hRichie makes great deserts and cakes and
pastries too.

Hi Rain,
We do eat very well, which is great, Richie certainly looks after me very well.
I think it is always good to be questioning especially of doctors.

Thanks both of you for coming by,
shame it is not to dinner.
Have a good start to the new week tomorrow.

Rain said...

Oh Herrad, I'd love to have dinner at your place! Imagine our 4 dogs together, lol? I have a pasta maker too, I haven't used it in a long time, just fell into a lazy spell since the miserable summer! But when I move next door, I'll have more room and a proper kitchen, so I'll be making my own pastas too! I just had a deja vous, have we discussed pasta making before???

Herrad said...

Hi Stephany,
Happy Sunday to you too, it has been very pleasant, we had a late and relaxed start.
First my leg and arm exercises and leg massag and pills.
Then it was chocolate and good coffee and radio and talking with dogs playing around us.
Very Sunday morning.
Thanks for your visit and comment, much appreciated.
Hope we have passed on some useful informat.
Have a good week.
Lots of love.

Have Myelin? said...

Your choice of photos was interesting- you picked birds and and it perhaps it signifies a freedom you feel in yourself by making that decision. I understand too.

Birds fly freely. =) You do too.

Lucy said...

My son Alan was exactly the same way with neurologists. Sounds like you not only have a keeper for a hubby , but an excellent cook.

Herrad said...

Hi Rain,
The dogs would be great fun, can't recall whether we discussed pasta making.
Great fun making your own and tastier.
Have a warm and relaxing afternoon/evening.

Hi Sherry,
Thanks for pointing out the link between birds and freedom, makes sense as I wish I were free from my constraints.
Wish we all were free from MS.

Hi Lucy,
Can't stand seeing those doctors, especially for alot of stress and no gain of any sort.
Richie is a wonderful cook.

Thanks for coming by, makes my day seeing comments from good friends like you.
Have a good start to the new week.

Cranky said...

Herrad - what's the point of seeing these highly educated specialists, especially the 2nd one, if they do nothing for you but tell you the bad news. No help or assistance at all, no treatment plan? Ridiculous.

In Skip's case, even where her neurologist is a decent human being, I always felt seeing him was a bit of a waste of time. There's not much that can be done with PPMS or SPMS.

JC said...

I don't like Dr's .. that's all I'm gona say.

Travelogue for the Universe said...

Hi Herrad, I am checking in late.I am sorry you had these experiences. I have seen and worked with all kinds of neurologists. Neurologists can be cold or eccentric or rude or have over developed brains themselves. No room for bedside manner. My neuro doc's are just right for me. Took me awhile to trust them. Sounds like your GP is loyal and approachable. And your diet is enviable! Have a great day! Love, Mary