Begin Diagnosis

Labs point to higher lactate level, past/current chronic fatigue, doc Michio Hirano of Columbia University suggests the "gold standard" muscle biopsy to look at hubby's respitory chain activity.  Is there dna blood testing we should ask for before we agree to this, as we already have so much medical debt, but are desperate for answers.  Also, his anxiety is up with all this medical testing so I just began a supplements program to calm him down , which consists of a calcium/magnesium, maganese, ip6 gold, a inositol hexaphosphate from calcium magnesium phytate, and phosphorus, and L-theanine, with b6, but I just read that cal/mag can reduce lactate levels, so I'm curious if any of this will change the result of the biopsy, or not.  Please advise any info welcome....many thanks and blessings....Superman's girl..... 

supermansgirl's picture

supermansgirl

09/04/2010

I'm so scared....I feel ilke I'm running a race to save my honey and have wasted so much time from so many docs, wanting to call this everything from soup to nuts!   We have fought so hard to get this far, so i hope and pray we are finally with the right doc to help him.  It's our first real glimmer of hope for an answer after being told, it was aging, denial, depression, all in his head!!!!!!   It has created a mistrust of docs, when you know in your own heart that something is so wrong, and you can't make anyone hear you!  We are so tired of fear and tears and frustration.....we just want an answer and knowledge to get his strength back....Blessings....   

mitoscottie's picture

mitoscottie

09/05/2010

Oh "supermansgirl" ... you are singing the song of the adult Mito patient and partner!  Not sure that will make you feel any better ... except, hopefully to banish your self doubts.  As a patient, your self esteem plummets with each successive doctor who gives you the run around ... actually a diagnosis helps bring back self esteem because, even though Mito is not well known YET ... you can say "I was right ... there is something wrong and it has a name!"

There are still very few doctors who can competently diagnose Mito and even fewer who will accept adult patients.

At this time, the very newest thing is non invasive testing for Mito: they are testing the blood, but this testing is in its infancy and it may take a lot of time to get answers.  I have no idea if this testing will be less expensive than a fresh tissue muscle biopsy ... but, at least, a muscle biopsy has been proven to give answers.

If you should decide to go for a muscle biopsy, make sure that you ask Dr Hirano about continuing to take the supplements he is on as they might skew the biopsy results.  Tell him what he is taking and the doseages of each ... also any meds he is taking.  Dr Hirano may want you to discontinue supplements for a period prior to the biopsy.

Good luck!  I, too, went through the wringer on the way to a diagnosis as an adult in 1991 during the early days.  Things are better now but by no means perfect.

supermansgirl's picture

supermansgirl

09/05/2010

Jean, thanks so much for your reply!!  Health is such a gift!!  Superman's stress level is crazy right now, with the new news of the pituitary tumor and a threat at work, he seems less able to brush it off, as in years past, so I don't know if that's a mito thing or not.  But I still call him Superman, cause he lives his life trying hard to do a good job, helping others as he is able, and believing in all that is good/right.  I just wish he could get the same dedication back in return.  I am trying hard to keep our faith and look to our future!!  Do you do a cocktail?  Many Thanks and Blessings....