busy week and next week too

[Guest guest]

Hey guys,

Whew, I've been so busy. I saw a urologist and he is pretty sure I have a neurogenic bladder. He also feels that I have problems with my urethra and a stricture due to muscular probs at the opening. I am having minor surgery to dialate it on the 30th and he is also doing some more evasive testing to check for neurogenic bladder.....he does feel though that I have probs with my nerves and muscles with my bladder and might also have issues with my renal tubes too. The thing I am most worried about is anesthsia since I just recently had probs with coming out of it in Dec for my muscle biopsy (probs with breathing and my heart rate). I'm gonna talk with the anesthsiologist about it early next week. Also I was supposed to have a MRI of my cervical spine on Tues. but that didnt work out because I was having severe tremors on my left side. This MRI was checking to make sure I dont have some sort of lesion on my cervical spine because my new neuro said my bladder symptoms and loss of reflexes recently and some of my other symptoms is common with lesions on the cervical spine. I am again going to try and have another MRI done this afternoon of my lumbar spine because of my lumbar lordosis and osteoperosis and how my low back pain is getting worse along with sciatica pain. The also want to make sure the lordosis isnt affecting any organs for some reason. I cant get both MRI's done at the same time cuz I just cant sit in the machine for 2 hrs. So they are breaking it up. I'm trying for the cervical spine MRI again at the beginning of Feb. I'm just wondering if the MRIs might also show anything with my muscles or anything else that mito might be causing? Since my muscle weakness and pain is the worse in my upper body- especially my shoulders and upper back and upper arms and neck. It even seems my muscles are a bit enlarged I've had some drs say- so wondering if an MRI might show anything dealing with any of that- does anyone know? I also am seeing a new gastroentorologist on Tues next week- hes supposed to be good at motility issues, especially colon dysmotility which seems to be my biggest problem recently with my GI dysmotility. My gastroparesis and dysphagia and small bowel dysmotility hasnt been so bad except for some probs with GERD and nausea and had a bout of severe vomiting for a few days last week. I'm also very bloated recently not sure if its from the gastroparesis or constipation but it had made me gain close to 15 lbs in 2 wks though I've lost 10 of it in the past week. Also I'm hoping to find a cardiologist that knows alot about dysautonomia cuz my symptoms have gotten alot worse especially with dizziness and blacking out and with hot cold responses. I also had pre-op testing yesterday and they said that I had tachycardia (was in the 130's) on my EKG and everything. My new neuro has been great at finding me my urologist and GI dr, hoping he has suggestions for a cardio too. I see him in 2 wks so will ask then. Also they upped my CoQ10 and carnitine some, right now cant remember the dosage but ever since its been upped my GERD has gotten worse, is that common? The riboflavin really seems to already be helping with my migraines and fatigue I think, maybe its everything. Also the zonegran is helping too with alot and the just upped my keppra cuz I had a bad seizure last week with a really bad postictal period too. They also put me on lexapro for anxiety and depression and also said it might help some with my pain and fatigue too. But whew, it made me dizzy the first 2 hrs after it kicked in I guess. Well, I'm also waiting on my muscle biopsy results (probably wont be for another month or so) but I'm also waiting on SSI/SSD within the next month should hear from them too. I might be moving 1-2 hrs away in march or april because some friends are moving to the town where the neurodiagnostic training program is offered that im very interested in. I'm so scared of moving though, have always lived with my parents except when I went to VCU an hour away for less than a year and that was different, that was dorms, this will totally be me supporting myself. I'm just hoping I can do it. I plan on going back to work PT at the hospital in that town also but gonna wait and see what happens with disability and how much I get and everything- hoping to get it this time, but my drs are all for me getting it. Also if I start working I'm definitely gonna get a scooter I think- havent worried about it much now since the only times I go out are mainly for appts and to friends houses. Also means I will have to do the Dr search all over again so that I have some local drs. Just got so many things stressing me out- I was planning on moving but was gonna wait till May or June, now its 2-3 months sooner. Its gonna make me more independant I think. Ok, enough venting, just thought I'd let yall know everything thats going on. I'm thinking I'm at least coming out of this most recent crash- the past 2-3 wks were really bad. Oh, also, I know Malisa is getting her muscle biopsy results today- so be prayin for her. I'll probably talk to her tonite but I'll wait and let her tell yall whats going on unless she says something. Ok, I'm gonna get going now, I've gotta leave in 30 mins for my MRI. yall take care.

~Adrienne

[Guest guest]

Adrienne

The Carnitor can give me some GERD problems right after taking it. I have

found that taking it after eating helps and then some ginger if it still

persists. I just try to ignore it and it goes away within an hour.

laurie

> From: moonchild62579@...

> Reply-To:

> Date: Thu, 22 Jan 2004 12:38:31 EST

> To:

> Subject: busy week and next week too

>

> Hey guys,

> Whew, I've been so busy. I saw a urologist and he is pretty sure I have a

> neurogenic bladder. He also feels that I have problems with my urethra and a

> stricture due to muscular probs at the opening. I am having minor surgery to

> dialate it on the 30th and he is also doing some more evasive testing to check

> for

> neurogenic bladder.....he does feel though that I have probs with my nerves

> and muscles with my bladder and might also have issues with my renal tubes

> too.

> The thing I am most worried about is anesthsia since I just recently had probs

> with coming out of it in Dec for my muscle biopsy (probs with breathing and

> my heart rate). I'm gonna talk with the anesthsiologist about it early next

> week. Also I was supposed to have a MRI of my cervical spine on Tues. but that

> didnt work out because I was having severe tremors on my left side. This MRI

> was

> checking to make sure I dont have some sort of lesion on my cervical spine

> because my new neuro said my bladder symptoms and loss of reflexes recently

> and

> some of my other symptoms is common with lesions on the cervical spine. I am

> again going to try and have another MRI done this afternoon of my lumbar spine

> because of my lumbar lordosis and osteoperosis and how my low back pain is

> getting worse along with sciatica pain. The also want to make sure the

> lordosis

> isnt affecting any organs for some reason. I cant get both MRI's done at the

> same time cuz I just cant sit in the machine for 2 hrs. So they are breaking

> it

> up. I'm trying for the cervical spine MRI again at the beginning of Feb. I'm

> just wondering if the MRIs might also show anything with my muscles or

> anything

> else that mito might be causing? Since my muscle weakness and pain is the

> worse in my upper body- especially my shoulders and upper back and upper arms

> and

> neck. It even seems my muscles are a bit enlarged I've had some drs say- so

> wondering if an MRI might show anything dealing with any of that- does anyone

> know? I also am seeing a new gastroentorologist on Tues next week- hes

> supposed

> to be good at motility issues, especially colon dysmotility which seems to be

> my biggest problem recently with my GI dysmotility. My gastroparesis and

> dysphagia and small bowel dysmotility hasnt been so bad except for some probs

> with

> GERD and nausea and had a bout of severe vomiting for a few days last week.

> I'm also very bloated recently not sure if its from the gastroparesis or

> constipation but it had made me gain close to 15 lbs in 2 wks though I've lost

> 10 of

> it in the past week. Also I'm hoping to find a cardiologist that knows alot

> about dysautonomia cuz my symptoms have gotten alot worse especially with

> dizziness and blacking out and with hot cold responses. I also had pre-op

> testing

> yesterday and they said that I had tachycardia (was in the 130's) on my EKG

> and

> everything. My new neuro has been great at finding me my urologist and GI dr,

> hoping he has suggestions for a cardio too. I see him in 2 wks so will ask

> then. Also they upped my CoQ10 and carnitine some, right now cant remember the

> dosage but ever since its been upped my GERD has gotten worse, is that common?

> The riboflavin really seems to already be helping with my migraines and

> fatigue I think, maybe its everything. Also the zonegran is helping too with

> alot

> and the just upped my keppra cuz I had a bad seizure last week with a really

> bad

> postictal period too. They also put me on lexapro for anxiety and depression

> and also said it might help some with my pain and fatigue too. But whew, it

> made me dizzy the first 2 hrs after it kicked in I guess. Well, I'm also

> waiting on my muscle biopsy results (probably wont be for another month or so)

> but

> I'm also waiting on SSI/SSD within the next month should hear from them too. I

> might be moving 1-2 hrs away in march or april because some friends are moving

> to the town where the neurodiagnostic training program is offered that im

> very interested in. I'm so scared of moving though, have always lived with my

> parents except when I went to VCU an hour away for less than a year and that

> was

> different, that was dorms, this will totally be me supporting myself. I'm just

> hoping I can do it. I plan on going back to work PT at the hospital in that

> town also but gonna wait and see what happens with disability and how much I

> get and everything- hoping to get it this time, but my drs are all for me

> getting it. Also if I start working I'm definitely gonna get a scooter I

> think-

> havent worried about it much now since the only times I go out are mainly for

> appts and to friends houses. Also means I will have to do the Dr search all

> over

> again so that I have some local drs. Just got so many things stressing me out-

> I was planning on moving but was gonna wait till May or June, now its 2-3

> months sooner. Its gonna make me more independant I think. Ok, enough venting,

> just thought I'd let yall know everything thats going on. I'm thinking I'm at

> least coming out of this most recent crash- the past 2-3 wks were really bad.

> Oh,

> also, I know Malisa is getting her muscle biopsy results today- so be prayin

> for her. I'll probably talk to her tonite but I'll wait and let her tell yall

> whats going on unless she says something. Ok, I'm gonna get going now, I've

> gotta leave in 30 mins for my MRI. yall take care.

> ~Adrienne

>

[Guest guest]

Adrienne,

You certainly have a lot going on. Know that I am thinking of you. I hope your MRI went well.

Smiles,

a

Hey guys,Whew, I've been so busy. I saw a urologist and he is pretty sure I have a neurogenic bladder. He also feels that I have problems with my urethra and a stricture due to muscular probs at the opening. I am having minor surgery to dialate it on the 30th and he is also doing some more evasive testing to check for neurogenic bladder.....he does feel though that I have probs with my nerves and muscles with my bladder and might also have issues with my renal tubes too. The thing I am most worried about is anesthsia since I just recently had probs with coming out of it in Dec for my muscle biopsy (probs with breathing and my heart rate). I'm gonna talk with the anesthsiologist about it early next week. Also I was supposed to have a MRI of my cervical spine on Tues. but that didnt work out because I was having severe tremors on my left side. This MRI was checking to make sure I dont have some sort of lesion on my cervical spine because my new neuro said my bladder symptoms and loss of reflexes recently and some of my other symptoms is common with lesions on the cervical spine. I am again going to try and have another MRI done this afternoon of my lumbar spine because of my lumbar lordosis and osteoperosis and how my low back pain is getting worse along with sciatica pain. The also want to make sure the lordosis isnt affecting any organs for some reason. I cant get both MRI's done at the same time cuz I just cant sit in the machine for 2 hrs. So they are breaking it up. I'm trying for the cervical spine MRI again at the beginning of Feb. I'm just wondering if the MRIs might also show anything with my muscles or anything else that mito might be causing? Since my muscle weakness and pain is the worse in my upper body- especially my shoulders and upper back and upper arms and neck. It even seems my muscles are a bit enlarged I've had some drs say- so wondering if an MRI might show anything dealing with any of that- does anyone know? I also am seeing a new gastroentorologist on Tues next week- hes supposed to be good at motility issues, especially colon dysmotility which seems to be my biggest problem recently with my GI dysmotility. My gastroparesis and dysphagia and small bowel dysmotility hasnt been so bad except for some probs with GERD and nausea and had a bout of severe vomiting for a few days last week. I'm also very bloated recently not sure if its from the gastroparesis or constipation but it had made me gain close to 15 lbs in 2 wks though I've lost 10 of it in the past week. Also I'm hoping to find a cardiologist that knows alot about dysautonomia cuz my symptoms have gotten alot worse especially with dizziness and blacking out and with hot cold responses. I also had pre-op testing yesterday and they said that I had tachycardia (was in the 130's) on my EKG and everything. My new neuro has been great at finding me my urologist and GI dr, hoping he has suggestions for a cardio too. I see him in 2 wks so will ask then. Also they upped my CoQ10 and carnitine some, right now cant remember the dosage but ever since its been upped my GERD has gotten worse, is that common? The riboflavin really seems to already be helping with my migraines and fatigue I think, maybe its everything. Also the zonegran is helping too with alot and the just upped my keppra cuz I had a bad seizure last week with a really bad postictal period too. They also put me on lexapro for anxiety and depression and also said it might help some with my pain and fatigue too. But whew, it made me dizzy the first 2 hrs after it kicked in I guess. Well, I'm also waiting on my muscle biopsy results (probably wont be for another month or so) but I'm also waiting on SSI/SSD within the next month should hear from them too. I might be moving 1-2 hrs away in march or april because some friends are moving to the town where the neurodiagnostic training program is offered that im very interested in. I'm so scared of moving though, have always lived with my parents except when I went to VCU an hour away for less than a year and that was different, that was dorms, this will totally be me supporting myself. I'm just hoping I can do it. I plan on going back to work PT at the hospital in that town also but gonna wait and see what happens with disability and how much I get and everything- hoping to get it this time, but my drs are all for me getting it. Also if I start working I'm definitely gonna get a scooter I think- havent worried about it much now since the only times I go out are mainly for appts and to friends houses. Also means I will have to do the Dr search all over again so that I have some local drs. Just got so many things stressing me out- I was planning on moving but was gonna wait till May or June, now its 2-3 months sooner. Its gonna make me more independant I think. Ok, enough venting, just thought I'd let yall know everything thats going on. I'm thinking I'm at least coming out of this most recent crash- the past 2-3 wks were really bad. Oh, also, I know Malisa is getting her muscle biopsy results today- so be prayin for her. I'll probably talk to her tonite but I'll wait and let her tell yall whats going on unless she says something. Ok, I'm gonna get going now, I've gotta leave in 30 mins for my MRI. yall take care.~Adrienne