Guest guest Posted December 21, 2003 Report Share Posted December 21, 2003 Hi Sheila, I just wanted to welcome you. I am and I have Mito as do all four of my children. We were all diagnosed when my youngest was about 2. I'm sure you'll find lots of info from the folks here. Alice is my mother. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2003 Report Share Posted December 21, 2003 Ny husband, after years of illness, has been diagnosed with mito disease. It's so far taken all his hearing, much of his ability to walk and has, in the past five days, started taking his sight. I am posting as he is unable to read on the computer anymore. He is 59 and had three bouts of illness before the doctors discovered this. What is most frighting now is the speed it is distroying him. While we finally have the digestive condition under control, (after loosing 50 pounds) the sight issues are by far the worse thing to happen. The " expert " is not giving us much as he wants to do yet more tests but what we want to know most is what to expect now. Nothing I read tells us much about prognosis or really what to expect. Energy is really minimal now with resting time/sleep running into between 16-18 hour out of 24. Can anyone tell us if they have had improvements? Taking the supplements prescribed and he's finally eating but... Any help or guidence would be appreciated. So glad I finally found you! Sheila Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2003 Report Share Posted December 21, 2003 Hi Sheila, I am so sorry to read that so much has happened to your husband. All of these losses are devistating and difficult to handle both emotionally and physically. You did say he's taking the mito cocktail. What kind of diet is he on? The weight loss must have been very hard to watch and I'm assuming that he had a serious bout with diarreah. I can see that you have every reason to be frightened at the speed with which this disease is attacking his body. It's a nasty disease. Where and how did he get his diagnosis and when did he first start to have symptoms? Does he have a good neurologist who is handling his care? Some people do experience improvements or at least some management with the supplements - but not everyone. Sleeping when he needs to is a good thing. Making sure he is hydrated is also a good thing. He should not be attempting to walk at this point as it requires his much needed energy. Do you have a wheelchair/scooter/power chair for him? If not - his insurance should cover a prescription written by the physician. How much CoQ10 is he taking and is he on Carnitor? These questions are just starters. I don't want to build up false hope, but we will try to help if it's at all possible. I'm glad you found us too. This next question is very important. How are you? We care about the family too. Please tell him we are here for him and for the rest of the family. Hugs! Alice Subject: new here Ny husband, after years of illness, has been diagnosed with mito disease. It's so far taken all his hearing, much of his ability to walk and has, in the past five days, started taking his sight. Sheila Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2003 Report Share Posted December 21, 2003 Welcome to the group. I hope the support and friendship will help you and your husband to deal with his current issues. Prognosis is impossible to predict. We are respond differently to the disease, treatments and life situations. Alice posed lots of good questions. You are in my thoughts. laurie > > Reply-To: > Date: Sun, 21 Dec 2003 18:58:15 -0000 > To: > Subject: new here > > Ny husband, after years of illness, has been diagnosed with mito > disease. It's so far taken all his hearing, much of his ability to > walk and has, in the past five days, started taking his sight. I am > posting as he is unable to read on the computer anymore. He is 59 and > had three bouts of illness before the doctors discovered this. What > is most frighting now is the speed it is distroying him. While we > finally have the digestive condition under control, (after loosing 50 > pounds) the sight issues are by far the worse thing to happen. > The " expert " is not giving us much as he wants to do yet more tests > but what we want to know most is what to expect now. Nothing I read > tells us much about prognosis or really what to expect. Energy is > really minimal now with resting time/sleep running into between 16-18 > hour out of 24. Can anyone tell us if they have had improvements? > Taking the supplements prescribed and he's finally eating but... > Any help or guidence would be appreciated. So glad I finally found > you! > Sheila > > > > > 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. > > > > ---------------------------------------------------------------------------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2004 Report Share Posted January 21, 2004 Welcome to the group. Most of the mito docs are pediatricians, but there are some that see adults. They diagnose kids and adults the same way, but once member of the family has been diagnosed, they might make the diagnosis by symptoms and family history. All the things that you were told you had, I was told the same. There just aren't many docs that even think mito and know to think mito. laurie > > Reply-To: > Date: Wed, 21 Jan 2004 18:15:24 -0000 > To: > Subject: New Here > > Hi! > > I have been having strange problems for several years including muscle > twitches, neurocardiogenic syncope, heart skips and palpitations, > migrating numbness etc. It seemed to start when I was pregnant but > looking back I had some symptoms prior to that. > > My 13 month son is not well either and now they think he has mito > although we haven't gotten an official diagnosis. I have been talking > to some of the parents on the mito board about him and we have an > appointment with the genetics clinic tomorrow for him. > > What I was wondering is do they diagnose adults the same way (test > urine organic acids and amino acids and then a muscle biopsy if those > show elevations)? Are there mito docs for adults? I saw some people > talking about going to see a pediatrician. > > I have heard that maybe I have MS, lupus, was actually treated for > late stage neurological lyme which I never tested positive for, etc. > Now I wonder if my son has mito if mine may be mito as well. Has > anyone had a similar situation? > > > > > > 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. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2004 Report Share Posted January 22, 2004 Hi, Sorry to hear that both you and your son are having alot of probs- if he has mito and you are having the symptoms- best you get checked out too- where are you from? Its possible that some of those symptoms are from dysautonomia but that happens alot with mito also. What type of probs are your son having if I may ask? I'm glad you did find us though. Anyways- I also have been suspected of MS and was even treated for lupus for 3-4 yrs. They still think I have something autoimmune going on and say its mixed connective tissue disease. My rheumatologist thought that all this was secondary to late stage lymes also and did a bunch of tests for it and even though they were neg thought I still had it. I've had probs since I was born. But they got really bad 5-6 yrs ago and have been the most severe the past 2 yrs (which is when they started to look into mito.) They also diagnosed me with CFS when I was 11 and fibromyalgia at age 18- I'm 24 now. I seem to been affected mainly neurologically with seizures, stroke like episodes, neuropathy, cognitive and memory probs, etc. Also I have dysautomonia, GI dysmotility, probable neurogenic bladder, myopathy (muscle pain and weakness), mild heart and lung issues (found through testing- lungs have respiratory muscle weakness and heart issues are mainly caused by the dysautonomia they said), endocrine probs, hypoglycemic attacks, hearing loss and visual probs, oh, and of course fatigue and exercize intolerance. As a child my main probs were hyptonia, developmental delays, migraines and seizures (though less severe) and muscle pain and exercize intolerance and some mild GI probs. I havent had a clear diagnosis yet but am hoping to have answers in the next month or 2. (had my muscle biopsy and other genetic tests in Dec.) It seems that mito can affect almost anything in the body and it varies with person to person what it does. Let us know how the genetic appt for you son goes. As for you seeing someone- some of us do see pediatric specialists (my main mito dr works at the local children's hospital and she will see adults if she feels they have mito or have a diagnosis). Anyways, you might live near a good specialist. I live in VA and there are some good drs in DC and I also have gone to dr. Shoffner in Atlanta and dr. Shields at the cleveland clinic. Keep us posted and hope to get to know you more. I've been less active here recently cuz I've been going through a bad crash. I do try and keep everyone updated and do read all the posts usually though. Again, welcome to the group. take care, Adrienne Quote Link to comment Share on other sites More sharing options...
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