Thursday, September 30, 2010

Another Win!

So, Tuesday was my original "urgent" neurology appointment. If I have any say in the matter, I'm going to keep this neurologist. He's assertive without being pushy. Knowledgeable without the God complex. It's refreshing.

Unsurprisingly he had nothing new to add diagnostic-wise, but he is a firm believer of diagnosis before treatment.

He figures it is either some sort of myoclonus, or some sort of tic; but with the falling episodes thrown in, it looks more like myoclonus, possibly myoclonic epilepsy.

He's going to send me for an EEG. Which is what the movement disorder lady said she was going to do back in April.

Hopefully this guy is a bit less patient with test results, and actually sends me for the test.

Oh, and as an added bonus: He's CUTE.

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Update on my best friend: she chipped a piece of bone off her hip, and it took 5 x-rays, and 3 specialists to figure it out. She's walking better, because the bone chip is no longer floating inside the joint, but I'm not sure what the next course of action is.

4 comments:

Flexability is over rated, creativity is ingenious said...

Epic Win for you!!!
It's such a nice breath of fresh air when we end up with doctors without the god complex. Hot doctors are a nice added bonus too ;)

Achelois said...

hi good to hear about a positive appointment.

I would be interested to find out what type of myoclonic epilepsy. Both my husband and son as I think I have told you about already albeit a while back now, have juvenile myoclonic epilepsy which does show up via a regular eeg> Because we knew about this issue with regard to myoclonic epilepsy ie:JME, we asked that our son had an ambulatory eeg which he wore for 72 hours (at home) because we didn't want him stressed. Bingo a diagnosis. Now your neurologist may be thinking of another type of myoclonic epilepsy rather than JME but I am unsure of the names of other types of myoclonic epilepsies.

Conversly, another person I know had exactly the same symptoms as you and had every neurological test on the planet to try and find out the cause of her drop attacks, myoclonus, etc. to no avail. It turned out that she actually had a heart problem which was causing the exact same symptoms! Further to a bypass all the drop attacks, falling, myoclonus etc. completely stopped. She had to put up with so much testing before her problem was diagnosed it was simply unbelievable.

Just telling the stories to help you out when you get fed up of going to less than helpful doctors and so pleased you have found a good one.

Please do think though about asking for an ambulatory EEG as they give a much more accurate diagnosis of what is going on. It may cost more than a short EEG but from our experience with being told all the symptoms you experience were not epilepsy because the quicker EEG's came up with nothing and because your symptoms are complex if possible I would really push for an ambulatory EEG to give 100% accuracy. Myoclonic epilepsies are historically difficult to assess via a normal eeg.

Hope your friend gets the help she needs.

BubbleGirl said...

Achelois,

I did mention to the doctor about EDSers (your family) having JME, and he said it fits the symptoms. He also said with the frequency of the attacks I'm having -more that 20 "episodes" a day- even if I don't have any issues during the test, it should still show abnormmal activity.

Also with the history of epilepsy in my family (my dad) it seems the most logical diagnosis.

As far as the ambulatory EEG, if the doctor deems it necessary, or if I can convince him to do it, it would all be covered under Alberta health, so the cost isn't an issue (Yay Canada!).

If it was a heart issue, do you think it would be caught on an ECG/EKG? Because with the EDS, I get those every couple years.

I also have a blood pressure issue which is responsible for some of my falls, but I'm not sure if it's just low blood pressure, or if it might be POTS... I still haven't found a doctor who will actually test for POTS, because if that's what it is, it's not severe enough for it to concern them yet (even though I've had at least 3 concussions because I've lost consciousness while standing due to low blood pressure). I've gotten pretty good at avoiding those, because they usually come with a couple seconds warning, so I sit down before I fall down most of the time.

Xan said...

Congrats on finding a good neurologist! I hope answers and treatment are forthcoming.