upcoming trip, etc

[Guest guest]

Hi guys,

Well, my symptoms continue to be pretty progressive this past week. My pain

is becoming unbearable and morphine doesnt even really help anymore. The pain

is in my legs severely now and usually thats where its the least. Also my

weakness has gotten worse there- I am seriously considering a wheelchair or

scooter

now- I just can't get around anymore without staggering around and being in

severe pain. I also continue to have clusters of seizures often along with very

odd post ictal periods. I will find myself wandering around a room, banging

my head on the wall, ulterly confused- I will be in these states for hours,

then slowly come out of them. I think a main reason for them is I havent been

sleeping enough which has been bringing on more seizures and of course with my

seizures i have extended postictal periods. But some of these symptoms are new

and scary. It seems these states of confusion, etc last longer each time. And

banging my head into walls- I do it on purpose but its like im in this

completely different frame of mind, with confusion and cognitive loss, its hard

to

explain, has anyone ever heard of this happening with mito? Then my hearing and

vision probs seem to be getting worse too. Unfortunately I dont have a local

neuro at the moment- I'm searching for one to take me on. I am waiting for my

neurogeneticist to call me back. And my mito dr who ordered my muscle biopsy and

other tests with dr shoffner- well, she cant see me till june. I am waiting

for my biopsy results, they should be in any day now from what I know (they got

all my results in and dr shoffner is supposively writing up the report this

week). Anyways.....I'm seeing a urologist tomorrow for my neurogenic bladder

and interstitial cystitis, this is a new one that knows more about these

disorders than the one I was seeing. Then I see a cardiologist Wednesday who

specializes in dysautonomia, I'm hoping that he will be able to help with some

stuff-

he also will be referring me to a better pulmonologist supposively. Then I am

going down to SC the next week to visit family at the beach and also to go to

a gastroenterologist, Dr. Lahr- well known as a motility specialist. He is

planning to do anywhere from 6 to a dozen tests on me and says that he feels I

am

a canidate for the gastric pacemaker (when the dr at CCF said I wasnt) and he

also said that with my colon dysmotility he might have to remove part of my

colon. I will learn more when I go down there. I just am still so overwhelmed

with all this stuff, my father is really giving me a time, he doesnt seem to

understand the extent of my problems and doesnt think I should be wasting the

family vacation on drs visits and tests. Oh, also there is a conference down

there that dr Lahr is part of from April 23-25 in ton SC, was the

one who told me about this bless her and now I have hopefully found a

wonderful GI dr finally. If anyone wants some info about the conference I'd be

glad to

share, its for dysmotility- mainly gastroparesis and constipation. Well, I

will keep yall posted of course, especially when those test results from my

biopsy and other tests come back. Thanks so much for being such a great support

system, dont know what Id do w/o yall. Hope yall are doing well. Thinking about

everyone.

take care,

Adrienne

[Guest guest]

Adrienne,

I'm sorry to read that your symptoms are progressing. It does sound as if a

wheelchair would be a good solution for some of the symptoms and for most of us,

the wheelchair provides freedom we otherwise don't have. Additionally, we use

less energy to get around and this helps other system problems because that

energy can go elsewhere.

I don't know what you are taking for seizures but it sounds as if this should be

worked up. Sometimes it's difficult to find the right combination to bring them

under control and it takes a dedicated physician to stay with this and make it

happen,. I hope you have some success finding one soon. I hope you are sharing

your difficulties with the Mito doctor because maybe she needs to see you before

June. I would think that she is the very person who could help you. Good luck

with the urologist and the cardiologist and pulmonologist. All of these

doctors, both old and new, working together should be able to provide you with

some help.

Enjoy your trip and be sure to share when you get back.

Alice