[juliejayne]

Yesterday I got to see my 2nd Neuro. She listened more than the first one did, did all the usual arms out touch your nose tests.

Then wrote up that there was nothing seriously wrong with me, but as I was out of breath from doing the tests, she prescribed Mensendieck therapy for my breathing. Her conclusion being that my poor breathing was causing the muscle weakness and pain.

Despair and depression are setting in, has anyone any advice. She didn't even want to discuss my worsening DV, because it is not her department. It seems that Dutch Health is compartmentalised to such an extent that unless you fit in one box (specialism) only, you have no chance.

[AnnieB3]

JJ, Well, this is just stupid.

You can't assess breathing issues by looking and listening to someone. Do they still believe in scientific proof in your country?! You need thorough breathing tests, and possibly an echocardiogram (in case it might be pulmonary hypertension).

Does the Dutch system respond to legal threats? Patient representatives? At least the UK's NHS has some sort of complaint system.

And I will say again that swelling of the feet has nothing to do with MG. Did you bring that up? If you have a heart, breathing, or circulatory issue, that might cause feet to swell. So could gout.

I do NOT understand this at all. Where the fluff is the good medical care in Europe?

You shouldn't despair simply because these doctors won't do a damn thing. There must be someone who can help you figure all of this out.

In the meantime, if you haven't already, write everything down—compartmentalized or not—and put it into categories that make sense. As if you should have to do that in order to get help! Lazy doctors.


Annie

[southblues]

Annie, we all love you.

[cait24]

Do you have a large teaching/research hospital? Look for one with a neuromuscular specialist doing research in MG. Most local neuros have never seen MG, don't recognize it and don't know how to treat it. Don;t give up. trying searching on the internet for a more experienced MG doctor. Ask questions to the office such as " how many other MG patients does he have?" Does he have experience with IVIG, Plasmapharessis and treating MG crisis?"

You have a right to know his level of expertise before paying to see him.

good luck
kathie

[AnnieB3]

And I love you guys, too, Celeste. Geez, did you have to threaten my MG by making me cry like a baby?

JJ, Are you still feeling like there's no hope in the medical world for you? Talk to us!

Annie

[juliejayne]

Still feel like I am fighting a battle single handed against a fully equipped army.

I went back to my GP and asked "What now?" She looked thoughtful and said "I think we will have to give up on that hospital." That was the local city hospital.

So now I have to arrange an appointment with another hospital (in a larger city nearby), but they require the details of the tests done at the first hospital. The GP doesn't have those details, I have to apply for a copy of my hospital dossier from the hospital itself, that might take 4 weeks.

In the meantime, my eyes are continuing to get worse, as are my swollen feet, which the GP put down to the fact that I can't do any exercise.

By the time that I do finally get a diagnosis, let alone treatment, I am going to be so much weaker than when I started, that I shall never be able to get back to anything like normal. Despairing and furious, but there just doesn't seem to be any way to get this health system to work any faster than treacle running uphill.

[southblues]

They should be able to produce your medical records immediately or at least overnight.

[juliejayne]

LOL, you don't know Dutch bureaucracy do you?

[juliejayne]

Finally got to see a MG specialist Neuro at a teaching hospital (LUMC). I had high hopes that, at least, I would be properly tested etc.

Disaster. The same perfunctory, push pull stand tests as the first Neuro I had seen, with the same result... he says it is NOT Neurological, and therefore not his problem. Go back to your GP.

The Dutch Health Service is frankly not fit for purpose. It is compartmentalised to the extent that if specialist A can find one thing that doesn't fit in their specialism, then you are out the door. I am really strugging to know what to do next.

[cait24]

I know how disappointed you must feel. I had several experiences like that myself. Was he a regular neuro or a neuromuscular specialist? Is there a large University hospital that does a lot of research in the Netherlands, if so I would try there. You should be able to search the doctors biography online and see if he has published papers or done research in MG. When you find one with experience like that ask to see him. I had to do a lot of searching on the internet before I found a neuromuscular specialist well experienced in MG. Don't give up.

Good luck
kathie