Despairing
 

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.:(

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.

:hug:
Annie

Annie, we all love you.

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

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

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

Annie

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.

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

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

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.

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

I don't know what to say, JJ.

It might not be MG, but it might be. A clinical exam is not sufficient to know for sure. Yeah, it can be revealing and MG is a clinical diagnosis backed up with tests, but there are patients who don't have obvious signs. If it was so obvious, how could my multitude of doctors have missed my MG for 41 years?!!!

All I can say is what I would do. I would make another appointment with the same neuro (possibly). I would bring someone else with me who knew me and my symptoms. I would write down exactly what has been happening, to not only document symptoms, but to have a paper trail of what I gave the doctor. I would not be argumentative, yet I would be firm about the fact that something is going on that is making a serious impact on my life. I would ask for the MuSK test. I would ask them to consider LEMS and CMS.

I would seek out a second opinion from someone such as an endocrinologist, since some hormone problems can cause weakness.

Have you seen a neuro-ophthalmologist?

I really don't know what else to say. I find these types of situations beyond frustrating. The patient ends up being a ping-pong ball, going from doctor to doctor, with not one of them thinking thoroughly about the situation. After which the patient is so beat up that they want to give up.

Take a step back, write some things down, and then plan what you'll do next. You can't give up on your search for help if you truly believe there is a health problem!!!

:hug:
Annie

Kathie, thanks, yes he was at a University medical centre, and works for the MG specialist team. He pointed out several times that He was the expert.

Annie, I decided to take the advice of the expert at face value and went straight back to my GP. Whilst I still do not have a diagnosis, she has agreed to put me on Mestinon for a 2 week trail period.

Oh and yes I did see a neuro-ophthalmologist, at a teaching hospital... she diagnosed Blepharospasm and suggested that I should have Botox treatment.

Mestinon.... works... 30 mg gets me back to a normal level of energy and activity.

It also appears to be improving my Blepharospasm (excessive blinking). Hopefully that will over time improve my double vision.

I missed that post of yours saying that you were given a Mestinon trial! That's great.

Mestinon doesn't do much for double vision. Sure, for maybe 2 hours it gets better. But then if you do too much computer work or drive or whatever stresses those eye muscles out more, the DV comes roaring back even on Mestinon.

At least it's helping! Will they give you more than a trial now?

Annie

Finally, after a failed SFEMG, the MG Specialist, phoned me to tell me that I had no neurological problems and to go back to my GP.

For good measure he added that he didn't need to do any blood tests as he could see that I did not have MG. He has seen hundreds of MG patients and can tell in a single consult, with no tests.

When I pointed out that Blepharospasm was neurological, he stated that the Neuro-ophthalmologist was clearly wrong because HE could see no signs of it.

As to why Mestinon had produced such a remarkable improvement, well according to him anyone would improve on Mestinon, and Placebo effects were common.

Unless I can get his boss to respond to my emails or letters, I have no other options. Anyone any suggestions?

You know why he said that, right? Whenever they see any kind of emotional (or what they might think is hysterical) reaction to something that other patients are fine with, they think the patient has psychological issues ONLY.

And once they plant those stubborn feet into the ground, they don't normally budge. Not only that, but they will belittle any other evidence another doctor has found. Sucks, but true.

You should've offered up some Mestinon to the doctor. ;)

It is NOT benign or anyone could buy it at a store. And any "placebo" effect would be accompanied by all of the cholinergic overdose symptoms, aka SLUDGE syndrome.

http://en.wikipedia.org/wiki/SLUDGE_syndrome

Say the patient is fine.
Laugh at the patient.
Underestimate the severity of symptoms.
Don't do anything; it's legally safer that way.
Give the patient false hope and then snatch the medication away.
Exit quickly and pass the buck to another doctor.

I have no idea what you should do next. Only you can decide that with your primary doctor. If you go the "boss" route, you'll just be red flagged or blacklisted. Use as much "sugar" as you can to get someone to help you!

I'm really sorry you're left without a solid answer. No patient should be left in that situation!!!

:grouphug:
Annie

:(

I'm so sorry, JJ.

How discouraging-- I am really sorry this is happening to you JJ!

Annie I love that... can I use it elsewhere.

Why not? It's been used on thousands of patients. ;)

It's not really funny, though, is it?! Enough of this substandard care.

Hi juliejayne,
Just to inform you that I referred you to "soniapos" whom I know from an other site (www.myasthenie.com in french!) but she told me that you were already in contact.
I hope the best for you,
Maurice.

I am so sorry JulieJayne....I am in the UK and your struggle has similarities to my own so I feel your frustration and despair!! :(

I'm not sure how your medical system works....is your GP able...and would he be willing to refer you out of area (if you feel able to travel)? Could you pay privately to see someone for another opinion?? I have paid in the past and found I feel more comfortable that way, (though I know many people feel you should not have to pay) I have found when you are personally paying for their time sometimes they listen and take more time with you and are not so confined to clinic lists and timings!!

And, also (just to rant!!), how is it that Doctors can happily say with confidence that response to medication is placebo effect with no tangible evidence but that the visible symptoms staring them in the face are the result of "nothing being wrong"???? It is well known that tests only show so much and every day new tests are developed....MG itself has antibodies which cannot be commercially tested for yet so how can they discount MG on the current, incomplete testing when there are teats they don't have yet?? It's like trying to fit someone into a nice, neat box that they haven't even finished making yet?!?!

Will be thinking of you and hoping you have some good news soon!! :hug:

Special thanks to Annie, Maurice and Unsure, and to everyone else on this forum.

Yes Maurice I have been in touch with Sonia. She is always helpful, like Annie is.

Unsure, yes the GP has already referred me out of area, the last Neuro I saw was in an MG specialist centre in Leiden... so much for that. Paying to go private is sadly not an option financially. And following on your rant, which I fully endorse, what really bugs me is that I haven't even been tested for MusK, LEMS, B12 deficiency, and probably for a heap of other possibilities.