Re: Interesting article about complex 1 inhibition by dopamine

March 4, 2005

Thank you very much for thinking of me. I spent most of the day yesterday

undergoing tests. I saw my neurologist today and he said that it appeared to

him that my brain tumors are still dormant (from the Gamma Knife in 1999), but

to make sure he is waiting to hear from Dr. Arjunan (my neurosurgeon). My

Grandson (Jeff) is a surgical technician and he said he sees Dr. Arjunan one or

twice a week, so he will probably know something next week as Jeff has my DPOA

for Healthcare. He said that Dr. Arjunan said that he feels that I have

Mytochondrial Myopathy (whatever that means). Dr. Welch needed some more labs

done today so I had that done before Jeff got there to pick me up. I really

think I am getting along fairly well. I am being fitted for a brace on my right

foot next week and then on the 30th Dr. Baker is having me see one of his

associates about my right knee. Dr. Baker said that " my knee is shot " , but my

health is not good enough to risk trying a total knee, so he is

hopeful that Dr. Mumford will have some good ideas as my knee stays in a bent

position all the time. It will not straighten out and it won't bend enought to

get it out of peoples way, I have to be cautious of how and where I sit so I

won't trip people as they go by, it is sort of " jammed " , I guess? I do have one

out-patient surgery scheduled for April first, I am in hopes that I will be able

to regain some of the use of it. Again, thank you for the info and thank you

for thinking of me. God Bless and good luck!

ohgminion rakshasis@...> wrote:

This article is on Parkinson's, so I think at least Dolores (if I

recall correctly) will be very interested:

http://www.neurorx.org/cgi/content/full/1/1/139

One reference of interest from it:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

cmd=retrieve&db=pubmed&list_uids=3100899&dopt=Abstract

Take care,

RH

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March 6, 2005

Dolores,

First off, Thanks for offering to place me on the Prayer Chain at

your Prayer Group,I truly appreciate each and every Prayer the Lord

sends my way thru this Angel Messengers.

Second,RH sent you this link about some of the Parkinsonian symptoms

you maybe experiencing that may overlap Mito ones as well. I can tell

you that I have been suffering with several Neuro Symptoms for years

now that we either ignored, misdiagnosed or assummed to be just part

of the whole mito problem only to find a new drug, for me Requip,

that is usually used for Parkinson's patients to be helping me

greatly! I have shared often that I have been having an awful time

with the muscle twitches/ fasciculations that my newest Neuro (of

what seems like zillions :-)diagnosed as FASCICULATIONS and NOT RLS.

He started me on Requip, .25 mg twice daily,( just my personal dose

& not a recommendation to anyone here as we can't diagnosis or

dispense meds to the list for liability as we all are aware) which is

a Levodopa Antagonist that is used primarily for Parkinsons Patients

and I have noticed a rapid improvement. My legs have decreased their

moving spontaneously& significantly and I can sit on he couch at

night and read a book and NOT have to reposition them every few

moments to make them comfortable or stop reading to look at them

wiggle and move all over---------what a difference----I am so happy

about it! Finally one thing going my way lately :-0) I am not sure

exactly what the Neuro symptoms you and RH were discussing from a

Parkinsons stand point because I am quite far behind in some posts

due to all the medical stuff happening here, but i just wanted to add

my 2 cents that there is some benefit to the cross over of the use of

meds from standard practice to Mito.

For what it maybe worth,

, who is running a few days behind

>

> This article is on Parkinson's, so I think at least Dolores (if I

> recall correctly) will be very interested:

>

> http://www.neurorx.org/cgi/content/full/1/1/139

>

> One reference of interest from it:

>

> http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

> cmd=retrieve&db=pubmed&list_uids=3100899&dopt=Abstract

>

> Take care,

> RH

March 6, 2005

Hi, Requip is one of the meds that my previous neurologist have given me as well

as Sinement, and Artane. When I saw Dr. Welch the neurologist that Dr. Baker

set up an appointment with for me (while I was in Washington State at my

cousins). She and her husband were in the midwest visiting friends and

relatives. Her brother lives at Hollister, Missouri, which is almost part of

Branson now. They stopped in Kansas City and then came here to visit me. They

got their heads together and checked with the airline they were ticketed on, to

see if there was availability for me to fly home with them as Christmas was

really going to be rough for me after just losing my son, August 25th.

Now I am afraid that he died from a Mytochondrial disease and in August. At that

time, I was using a walker and afraid that I might have to go to a wheelchair,

and then the next step would be a bad one, I was so afraid I would end up in a

nursing facility. I saw with my own eyes what happened to my

poor, Dear Mother, when my husband's cancer came back and I was having such a

hard time getting around and Mother's Alzheimers was progressing rapidly. We

were to the point that between the two of us we could hardly get get into the

bathroom and we had no alternative but to have her go to a nursing facility. I

lost her June 11, 2001 at 1:30 am. She had a light stroke (which the nurse did

not take note of) I had been to church and went straight over to see her so I

could get to the hospital to see my husband, and I immediately asked the nurse,

" when did she have a stroke and have you called the doctor " ? Her answer was,

" Gee, do you really think she has had a stroke " ? I informed her that I was

going to pick up my prescriptions and for her to call the doctor. I gave her my

cellphone number and told her to call me as soon as the doctor got there. Bless

her heart she had a massive heart attack and was gone before the sun came up on

a new day.. Nursing facilities are a horrible

place to be. I am so thankful to Dr. Baker cared enough to research my case to

find a defintive diagnosis. My son, Bill told me yesterday that he can't hardly

believe what he is seeing as since I am off all of the Parkinsons meds, that the

change in me and how good I can get around is amazing, as at 's funeral in

August it took three people to get me up a slight incline to his gravesite for

the rest of his funeral service. As I said I was having to use a walker and

having to have help to get in and out of a vehicle, in and out of church, and to

just stay on course. Parkisnsons meds killed my cousin at Hiawatha. Her

condition was so deterioated before her neurologist retired and another

neurologist took over her case and told her that even though she had been being

treated for Parkinsons that she did not now nor had she ever had Parkinsons and

that he was taking her off all her meds. She passed away in a nursing facility

where she had to go prior to the doctor telling her

she did not have Parkinsons. he poor husband just couldn't handle her any

longer. He would go to the nursing facility she was in and stay the entire day

with her to make sure she was cared for properly. I hope and pray that you will

get along OK and I am so thankful to the Good Lord for my second chance at being

an almost whole person again. I feel that I am a real Pain to my friends at

church, my son for having to stop what he is doing and run an errand for me or

come and get me to just go to the Telly machine that I can see from my door, but

just can't walk that far yet, my beloved Grandson for being willing to take on

my healthcare and seeing to it I get to where I need to go. He has three

daughters and yet he always check to see if I need anything or need picked up at

the doctors, or whatever. Dr. Baker says that my right knee is " shot " , but I am

in no condition for a total knee. He is going to have my right foot fitted for

a brace and then he is having me see another

doctor in His group to see if her has any good ideas about my knee. I am

scheduled for surgery on my right hand it appears that I have a nerve caught up

someway and they plan to go in and release it. My Grandson said he has seen

this surgery done a good many times, He has talked to a friend of his that is

an anesthesiologist and has told him that he wants som kind of a block done on

my arm for the surgery. He is a surgical technician so he has a lot of medical

knowledge and I am thankful I have him. I still have my box of Requip, as Dr.

Welch told me not to get rid of it as it is used for more than one illness. I

also have recently been diagnosed with trigeminal neuralgia

in my right eye and the right side of my face. Dr. Welch had put me on Neurotin

for peripheral neuropathy in both legs. Prior to the Neurotin the only thing

that I was able to do for the neuropathy in my legs was to use my Antodyne Home

Thereapy machine every other day.

Dr. Welch now has me taking one 300 mg capsule four times daily for the

neuropathy in my legs and the neuralgis in my right eye and face. I have been

having horrible sharp stabbing pains in my right eye, it only lasts for a few

seconds but it comes back again and again. If the wind hits me in my face and

eye the pain is really bad. I am in hopes that the Neurotin will help my eye

also. With me it seems like it is one thing after another, but I keep plugging

along. God Bless you and yes, you are getting a lot of prayers! I pray that

it will help you. Dolores

mitomomtoo mitomomtoo@...> wrote: