so what's new?? sharing updates
 

Hello friends :)

Since it has been over a month since the original braintal ent offline, I'm sure that there have been some changes for many of us.... so what's new?


For me -

My doc changed up my meds a bit to help more with the pain, and so far it seems to be helping a lot.

I went on vacation with my family (husband, parents, siblings) for a week and had a great time. I wasn't able to participate in all the activities with everyone, but I did what I could when I could do it and I was able to have a good vacation without a huge flare-up.

So what is new with everyone else?

I am so glad that you had a great vacation.

I got some strange news from my neuro today. He, evidently thinks that he has figured out my mystery disease (it's been 4 years now). He asked me if I ever saw Awakenings. Anyway, he says that they got sick from influenza, and he thinks that my high fever did the same thing, damaging the left side of my brain including the dopamine producers. That's why I have parkinson's sx, but not full blown PD. He doesn't think that it will get worse as long as I stay on Mirapex, a PD drug.

On the other hand, I got sick a couple of months ago. I have had a ct scan, a bunch of blood tests, several ultrasounds and a biopsy. No one is sure what is causing the pain. The next step is the gastroenterologist, yuck. My gp thinks that this is all being caused by some adhesions that have pretty much stuck my "innards" together.

Anyway, that's what is happening in my world at the moment.

I sure missed this place.

Mama

Hi Wittesea ...nice to see you, been a long time...and Hi Mama,

For me I've been back in hosp for a week for resp work up...one things for sure my Peak (FVC/FEV)came back as 13% of predicted. No wonder I am so Short of Breath.
Started flaring before we went of line and it has persisted and in addition I now having problems with my knees, pain on going to sit, stand etc, and walking. On lots of pain meds already so GP scratching head, await Pain Doc in a weeks time and Vasc Surg in 2-3 weeks time.
No fun...still managing to laugh but parents keep going on about mobility scooter when I said think we might try a short break....just feel this is one step nearer being in a wheelchair...that upsets me as still have no real answers as what is going on, since surgery resolved nil. apart from better blood flow.

Anyway enough of that, Wittesea I am glad you managed a good vacation, and Mama hope they untangle your puzzle soon.

Too all others...best wishes and take care.
Hx