Guest guest Posted March 14, 2002 Report Share Posted March 14, 2002 Please remove me from this list until further notice. Thank you-- Mark wrote: > > Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > ------------------------------------------------------------------------ > > There are 25 messages in this issue. > > Topics in this digest: > > 1. Leprechaun? :- ) NMR > > 2. Re: Re: no diagnose yet - Jerry > > 3. Yo Ed! > > 4. biopsy results?help > > 5. Re: biopsy results?help > > 6. Re: Yo Ed! > From: aadams0000@... > 7. Re: Digest Number 2078 > > 8. Re: biopsy results?help > From: aadams0000@... > 9. Re: biopsy results?help > > 10. Re: Digest Number 2078 > From: aadams0000@... > 11. Re: biopsy results?help > > 12. Re: biopsy results?help > > 13. Re: biopsy resultsAlice > > 14. hi folks -- genetics? > From: Gme240@... > 15. Re: biopsy resultsAlice > From: aadams0000@... > 16. Re: Re: no diagnose yet - Jerry > > 17. Re: Krisalynn is a new mommy! (NMR) > > 18. Re: Yo Ed! > > 19. Re: hi folks -- genetics? > > 20. Sleep Apnea? Jerry > From: aadams0000@... > 21. Re: Re: no diagnose yet - Jerry > > 22. Re: Re: Yo Ed! > From: aadams0000@... > 23. Re: hi folks -- genetics? > > 24. Re: Re: no diagnose yet - Jerry > > 25. Ed's Website > From: aadams0000@... > > ________________________________________________________________________ > ________________________________________________________________________ > > Message: 1 > Date: Wed, 13 Mar 2002 22:39:56 -0000 > > Subject: Leprechaun? :- ) NMR > > That's cute Laurie. > > Well..Yahoogroups is going down from at least Friday to Sunday so I > guess they have some repair work to do. It's quite obvious that > they need to patch some things up. > > Can you imagine all the mail that goes thru their server? > > Alice > > ________________________________________________________________________ > ________________________________________________________________________ > > Message: 2 > Date: Wed, 13 Mar 2002 17:48:39 -0500 > > Subject: Re: Re: no diagnose yet - Jerry > > Jerry > > Can't remember if you said you were on the mito cocktail or not. Besides the > supplements, I take Lamictal (another anticonvulsant) which helps with my > myoclonus (jerking), cramping and neruopathy pain. So far, I haven't had to > add the neurotin. > > laurie > > > Reply-To: > Date: Wed, 13 Mar 2002 14:11:47 -0800 (Pacific Standard Time) > To: < > > Subject: Re: Re: no diagnose yet - Jerry > > test were done in pittsburgh umpc symptoms are major nerve and muscle pain > much weakness on my right side. nerve pain in part of head making right side > of face fill brused. very tired all the time. i take 4 or 5 naps a day. i > started to have pain in my arms about 6 months ago, lost my speech several > times within the last year > at time i can't stay awake. my wife says when this happens. i can;t even > move my mouth to talk. having trouble with bowls and bladder and heart. i > was on neurontin 10 mg. nothing happend. found a new neuro. doctor. she is > the one that is doing all these test. she now has me on 300 mg. tablets 3x a > day. helps some. buts legs still hurt and fill numb. this all started in > 1999. when it really started hitting me hard. haven;t worked for a year now. > i do use a walker to help me get around. arms and hands are hurting just > from typing this.also having much other problems. but too many to tell. > > [This message contained attachments] > > ________________________________________________________________________ > ________________________________________________________________________ > > Message: 3 > Date: Wed, 13 Mar 2002 17:49:58 -0500 > > Subject: Yo Ed! > > Yo Ed! > My name is Dave and I am a 47 year old male that started to have problems like you describe in your email about 13 years ago. I was very active and then started to have trouble keeping up with my friends. I have been diagnosied with and treated for ALS, CIDP, MS and now Mytochondrial Myopathy. I am now off of prednisone(10 years), and plasma pheriesis(sp?) treatments that I did for 2 1/2 yrs. The best I can say is that i lived through it. > I had a tissue sample done about 2 yrs. ago and it was repoted that i had " ragged red fibers " and therefore I am now diagnosed with Mytochondrial Myopathy. (Of course, I am simplifying this. I have enough chemistry analysis, EMG's, EKG's, all sorts of test and clinic reports to fill a filing cabnet, which it does.) I am taking the Mito Cocktail, paying more attention to what i eat and how it is prepared, do yoga, with alot of help (I can not stand, or walk and overall I am much weaker then what I appear i should be) and when I feel up to it, I swim and walk at the PSU swiming pool. I am feeling much better since I am off steroids and have stopped all treatments such as Plasma pheriesis, which is kind of like dialysis. > You have found a great support group and if you pay attention you will learn alot. I am sorry you need to learn these things. Most probably your situation is like mine and some others on the list but you will have some things that we don't and we, thankfully for you, will have problems you don't have. I hope you have a good support group around you. Try to enjoy everything you are presently blessed with. You will need to deal with loss on a constant basis. This group will help you through this. Good luck! > I do not write much to the list. I try not to be in front of my computer too much. I check the list just about every day. If I can be of help, please ask. I warn you that when Alice asked for my help recently(computer related), I was not one bit of help. Dave > > [This message contained attachments] > > ________________________________________________________________________ > ________________________________________________________________________ > > Message: 4 > Date: Wed, 13 Mar 2002 16:49:20 -0600 > > Subject: biopsy results?help > > Hi All! I saw my neuro today. He had some of my biopsy relsult back. The > initial report said COX defiency. The blood DNA was negitive, which I > understand, I don't have mito in my blood, but can have it in my > muscles...not sure why we ran that test! The enzyme part isn't back yet. I > am so confused...he said the rest can be inconclusive, not show anything, > still have mito, maybe not. Why have all these tests if there isn't a sure > thing answer? He says he is now only 60% sure I have mito, but he wants me > to see the ped mito specialist. We have ruled all else out. I feel like I > am heading to a brick wall (again). They only test for certain types of > mito, they may never know for sure...right? If I have any degree of COX > defiency, than that means mioto of some sort...right? Then he says I have > heridatary mito. My mom is symptomatic, what is she supposed to do? I wish > you could pee on a stick and get a plus or minus!!! So, If any out there > can shed some light, but don't hurt my photophobic eyes! COX > defiency=mito,,,??? I am continuing on the cocktail and starting > neurotonin. AM I diagnosed or not? > sorry for the rambeling...JULIE > > _________________________________________________________________ > Chat with friends online, try MSN Messenger: http://messenger.msn.com > > ________________________________________________________________________ > ________________________________________________________________________ > > Message: 5 > Date: Wed, 13 Mar 2002 18:06:51 -0500 > > Subject: Re: biopsy results?help > > > > I like your diagnostic tool of peeing on a stick. Wouldn't that be nice? > > Let me see if I can help you out a bit here. There are mitochondria in the > white cells and platelets of the blood, but not the red cells. When they > look at blood they are looking at a very few pieces of DNA which they can > test for. These would indicate mito if you had one of these few types of > mito. I'm not sure if the enzyme testing was done on fresh muscle or > something else. I had four frozen biopsies which were negative and the fresh > one showed a complex I defect, confirming mito. My most recent biopsy showed > a complex I,II,III, and IV defects, but that is another story. > > If you have mito and the defect is in the mitochondrial DNA, then you would > have gotten it from your mother as she is the one who gives you your mtDNA. > If the defect is in the nuclear DNA, then it can be transmitted in many > different ways from either parent or both. Even extensive mtDNA testing on > my fresh biopsy specimen didn't show a defect in the region they thought to > find it, so we still don't know if it is mtDNA or nDNA, although our family > history strongly indicates mtDNA (3 generations). > > I can't answer the COX part of it. My brain isn't making sense of that part > of the information I put into it. I am sure someone else can answer that for > you. > > laurie > > > > > Reply-To: > > Date: Wed, 13 Mar 2002 16:49:20 -0600 > > To: > > Subject: biopsy results?help > > > > > > > > Hi All! I saw my neuro today. He had some of my biopsy relsult back. The > > initial report said COX defiency. The blood DNA was negitive, which I > > understand, I don't have mito in my blood, but can have it in my > > muscles...not sure why we ran that test! The enzyme part isn't back yet. I > > am so confused...he said the rest can be inconclusive, not show anything, > > still have mito, maybe not. Why have all these tests if there isn't a sure > > thing answer? He says he is now only 60% sure I have mito, but he wants me > > to see the ped mito specialist. We have ruled all else out. I feel like I > > am heading to a brick wall (again). They only test for certain types of > > mito, they may never know for sure...right? If I have any degree of COX > > defiency, than that means mioto of some sort...right? Then he says I have > > heridatary mito. My mom is symptomatic, what is she supposed to do? I wish > > you could pee on a stick and get a plus or minus!!! So, If any out there > > can shed some light, but don't hurt my photophobic eyes! COX > > defiency=mito,,,??? I am continuing on the cocktail and starting > > neurotonin. AM I diagnosed or not? > > sorry for the rambeling...JULIE > > ________________________________________________________________________ > ________________________________________________________________________ > > Message: 6 > Date: Wed, 13 Mar 2002 18:24:20 EST > From: aadams0000@... > Subject: Re: Yo Ed! > > In a message dated 3/13/2002 3:50:44 PM Mountain Standard Time, > davidlo@... writes: > > > I warn you that when Alice asked for my help recently(computer related), I > > was not one bit of help. Dave > > Right ... <grin> > > Nice to hear from you today Dave. Thanks for the words of wisdom for Ed. > > <smile> > > Alice > > [This message contained attachments] > > ________________________________________________________________________ > ________________________________________________________________________ > > Message: 7 > Date: Wed, 13 Mar 2002 15:39:00 -0800 > > Subject: Re: Digest Number 2078 > > on 3/13/02 2:39 PM, at > wrote: > Please unsubscribe....again....how did I get on this list....again....thank > you > > > > Medical advice, information, opinions, data and statements contained herein > > are not necessarily those of the list moderators. The author of this e mail is > > entirely responsible for its content. List members are reminded of their > > responsibility to evaluate the content of the postings and consult with their > > physicians regarding changes in their own treatment. > > ------------------------------------------------------------------------ > > > > There are 25 messages in this issue. > > > > Topics in this digest: > > > > 1. Re: New guy! > > > > 2. Re: New guy! > > > > 3. Re: New guy! > > From: Gme240@... > > 4. Re: Cost of Mito Cocktail > > > > 5. newly diagnosed > > > > 6. Re: newly diagnosed > > > > 7. no diagnose yet > > > > 8. Re: no diagnose yet - Jerry > > > > 9. - Bruising > > > > 10. Re: Re: no diagnose yet - Jerry > > > > 11. Re: Re: no diagnose yet - Jerry > > From: Gme240@... > > 12. Re: no diagnose yet - Jerry > > From: aadams0000@... > > 13. Re: Re: no diagnose yet - Jerry > > > > 14. Re: Jerry > > From: aadams0000@... > > 15. Re: - Bruising > > > > 16. What If - NMR > > From: aadams0000@... > > 17. Re: - Bruising > > From: aadams0000@... > > 18. Re: - Bruising > > From: Gme240@... > > 19. Re: Digest Number 2077 > > From: golynie@... > > 20. Re: Digest Number 2077 > > From: aadams0000@... > > 21. Re: Anyone know answer?? > > From: Noelshep247@... > > 22. Re: Digest Number 2077 > > > > 23. Bruising > > > > 24. Re: newly diagnosed > > > > 25. Re: no diagnose yet > > > > > > > > ________________________________________________________________________ > > ________________________________________________________________________ > > > > Message: 1 > > Date: Wed, 13 Mar 2002 07:21:02 -0500 > > > > Subject: Re: New guy! > > > > Ed > > > > Welcome to the group. I hope you are able to get enough information that you > > can help your doctors make an accurate diagnosis. Many of us had to initiate > > testing for mito after many things were ruled out. > > > > Sorry you are having problems with walking and with your arms, but you are > > in good company who might have some ideas to help. > > > > laurie > > > >> > >> Reply-To: > >> Date: Wed, 13 Mar 2002 02:22:04 -0000 > >> To: > >> Subject: New guy! > >> > >> Hi everyone. I'm Ed and I just joined this group because for the > >> last two years I've gone through progressive weakening of my arms and > >> legs, etc. to the point where I need a walker most days now. We've > >> tested for inflamatory myopathies and MS so far. All my tests with > >> the exception of the Ischemic Arm test came back fairly normal, yet I > >> can barely walk. The Ischemic Arm test showed high lactate. > >> > >> I looked at the UMDF site and ruled out quite a bit but quite a few > >> are still possibilities. Both my rheumy and neuro are at a loss and > >> I'll most likely be referred to the Bethesda Naval Hospital. I'm > >> still active duty Navy. > >> > >> I have an online Medical Diary I keep updated at > >> http://www.rodgersweb.net/crestview Just click on the Medical Diary > >> link. If anyone has time, and I certainly understand if you don't, I > >> would love to hear if anyone had a similar experience with > >> symptoms/onset of symptoms and what it took for a diagnosis. I would > >> deeply appreciate anyone's time. > >> > >> Thank you! > >> > >> Ed > >> > >> > >> > >> > >> Medical advice, information, opinions, data and statements contained herein > >> are not necessarily those of the list moderators. The author of this e mail > >> is > >> entirely responsible for its content. List members are reminded of their > >> responsibility to evaluate the content of the postings and consult with their > >> physicians regarding changes in their own treatment. > >> > >> Quote Link to comment Share on other sites More sharing options...
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