DAWN: WEIGHT LOSS and MITO COCKTAIL

[Guest guest]

Dawn,

Get a copy of your medical records. I just found out that the results from the MRI spectroposcy I had done in 1997 that Dr Larson-Peltier told me had signs of seizures are not in my records from Ozaukee Med Center and Dr Tick. He is ordering them again.

As far as the night sweats and weight loss symptoms go--My sister and mother both had those symptoms. You do not want to wait till you have those symptoms. My mother had a very bad seizure 6 months after starting to lose weight. In 1988 and the hospitals in Wausau they had no idea what was going on. She died in March 1988.

My sister also started losing weight--from 110 to around 90 back in 1994. St Luke's in Milwaukee (a supposedly very good hospital) could not figure out why she was losing weight or why she went into a coma. It was not till 1996 and another coma that the family doctor where they moved in Manitowoc started looking and found the answers from DR Tick in Milwaukee.

Answers came too late for her also. So, you do not necessarily need a diagnosis but you could start the vitamin cocktail of Carnitine and CoQ10 without a prescription.

The carnitor is by prescription but maybe you could get your pcp to write it for you. Also the Qgel works well.

Also, please send me your email or phone number as I have some other info related to Wisconsin for you.

Janet Sample jsample@...

Re: Has anyone had inflammation on a muscle MRI.

--- It sounds like so many of us have had problems getting a diagnosis unless they have a confirmed case in their family. However I would not want to be in there shoes because there family members seem so very ill! It is so hard to communicate to the doctors how debilitated this can be. I know that I would be really sick if I had to work like you. My neuro does not understand why I can not work. If I did I would not be able to care for my children.I do keep copies of my medical records. The first neuro I saw did not document any of the symptoms that I had. He stated that I did not have certain symptoms such as no weight loss, no c/o night sweats, no muscle of joint pain... I was in the hospital when I read this and my PCP said I could fire him, so I did. Thanks for reminding me I need to order my last few visits. I have not gotten to read the one where she says I have conversion disorder. I just know about it from my PCP. It sounds like I have a long and bumpy road ahead of me. Thanks for being honest. It is nice to know I am not alone in this. Thanks!DawnIn , "venomvw" <umhkyfan@c...> wrote:> Dawn I'm so sorry you're having such a hard time with your doc. I > had a negative MRI but a little prodding from my rheumatologist and > myself made the neuro doc re-consider one more biopsy (#4).> > One thing that you might want to do (if you haven't already) is get > a copy of your medical records / tests. I found that several of my > docs did not portray an accurate picture of my examination results, > plus, they flat out relied on what residents told them and that was > frequently inaccurate. One even claimed that I exaggerated a > balance disorder to make it seem as though I had one even though she > thought I didn't. Funny, the doc that conducted the test for > balance FOUND a balance disorder. Believe me, you get a full day of > testing and you certainly can't fake them out if you tried !> > Most of my many tests and labs haven't shown disease. The clinical > exam and thankfully biopsy # 4 showed mitochondrial > myopathy...without a doubt ! I thank God that a few of my docs > could physically see that I was ill...weak...exhausted...in > pain...etc... > > When I first started the diagnostic process, docs just thought I was > overweight and stressed out from work. Now that I've lost the > weight and have been sicker than ever, they're finally starting to > believe me. Part of the problem is that we're women. Male docs in > particular can sometimes have the attitude that we're just overly > emotional. Unfortunately, I'm finding women docs with the same > attitude lately.> > I wish I could give you a huge pep talk and tell you to move on to > another doc but that might give you the same result. It took me > more than 20 years to find someone who believed me...plus a whole > lot of tests. I'm still having to keep my docs on their toes ! > > Hang in there :)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.Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack.