toddm1960

Hey noodle, you didn't say if your BP went up or dowm when you stand. I'm in the orthostatic hypertensive group, we don't need addtional salt normal amounts are fine. Nothing is straight forward with dysautonomia.

Don't feel guilty, we're all in the same boat. Stay positive, and enjoy every good day, or hour and when those are over just know that another one in on the way.

I take 800mg of magnesium oxide every morning and it gets my colon moving again. I don't find any improvements in my POTS symptoms

Don't give up, stay positive for them. The group most likey to have total remission is teenagers, keep reminding them of that. It isn't easy short term, but long term they have alot to look forward to. Everyday brings us all one day closer to our next remission. Speaking of remissions I havn't seen a post from Rama in months, my guess is he's hit his next one.

I pool when I eat, no matter how little. Real bad if I eat even close to normal amounts of food. I pool when I stand up, worse if I'm moving around.

So if you don't have POTS why didn't they take you off the POTS meds you're on? Last I knew it was either 30 beat per minute increase or over 120bpm to dx POTS. Such mis-infomation out there in the medical community about all autonomic issues.

Ericka thanks for adding that eating seems to help, forgot to add that

That's awesome you have doctors doing this type of in depth testing, wish the word would get out to more. It's tough to get insurance to cover one TTT. Hang on to that doc you're very lucky, I hope they can find something to help you.

Hey Sun I get this all the time also, keep telling any doc that will listen that it feels like hypoglycemic. It seems like a lack of energy, I get the jelly arms also. Wish I knew the cause, maybe we'll find out together.

I'm all for more research

In my 5 year journey I've seen 28 doctors.......so far, going to see the 29th next Wednesday. I've learned not to waste time on doctors like this, fire him and keep moving forward. Find someone who will help you, and work with you. Not shut up and suck it up, everyday you waste with this guy is a day longer for you to get help. Good luck finding another doctor and I hope you start to feel better soon.

Julie we could never hate you............you're macks Mom....... I say this alot, but we're all one day closer to our next remission.

I didn't see what meds you were on, but since my mito diagnosis I have learned that beta blockers and statins reduce our bodies levels of CoQ-10 and turn reduce our level of energry and ability to recover from any activity. Exhaustion has always been my primary symptom and most limiting problem. Just one more thing to look at, I hope you start to feel better soon.

That's awesome!!!!! The group with the best chance of total remission is teenagers, let's hope we're seeing the start of that. But always remember we're all one day closer to our next remission.

Exercise for me is getting through a shower.....then finding a chair. So many levels of this. I was very surprised to see how many on this post could exercise, the one tread getting a workout group together I was shocked how many said they could do this or that. I must be in the minority. I'd like to see a simple poll....can you exercise, yes or no. Just to see what percentage of us can not, I'm feeling a little lonely in reclinerville.........

Here?s my diagnostic two cents?..When all is said and done (maybe not in our life times) the root cause of this will be found to be a retrovirus (XMRV?) Which then disrupts our mitochondrial function, then not supplying enough energy / ATP to our nervous systems causing dysautonomia, cfs, fibro and who knows how many other things. It has so many arms and legs it?s far beyond a medical community that?s more worried about money than treating people. Just my random thoughts??

Even if you don't get symptom relief from taking the mito cocktail, doctors advise it slows the progression of the disease. This is the reason to get tested and rule out mitochondrial causes. As for your doctor.........lets just say I've been to 28 before I knew enough to push for a TTT, then push for mito testing. Fire doctors like that and move on, this is hard enough with doctors that care and will work with us to waste time with ones that won't.

All CoQ-10 is not created equal, what we need to look for is ubiquinol this form is much more bio available. Most forms you see on stores and is much cheaper is ubiquinone, you wont get the results with this form but works fine for people without problems.

That's great news, I was hoping they would either request samples from confirmed POTS patients or would find that a high number of confirmed XMRV cases had OI.

Hi Pooh I to have a confirmed case of mitochondiral disease, mine was confirmed with muscle byopsy, CSF, and blood tests. You're correct that there isn't as much information out there for "adult" mitochondrial disease, lets hope this changes as they get better at diagnosing it. The information I've found on this, point to the lack of engery as the primary cause for your nervous system problems, in fact most research points to the CNS as the first organ effected by a reduction in ATP. I've found very few neurolgist or geneticist know very much about mito and even less about adult mito. The drugs / vitamins / co-factors I'm on are Leucorvin, Tishcon's ubiguinol (CoQ10), L-Carnitine and Creatine. After one month I haven't seen any change......yet, but it's kind of a catch 22. My mito is causing my dysautomonia which in turn is causing my slow motility which has caused my very bad absorbsion which causes me to not be able to absorb any of the drugs I'm taking to help my mito..... As Glida Radner said........it's always something. I hope you find a doctor that can help you and keep us up to date, the best information I've gotten is from this site.

I'm orthostatic hypertensive so I don't have the same low BP as yourself. My doctor had me try 5mg of ritalin once a day, it made me very shaky and very dizzy. I stayed on it for a week then stopped for a month, then tried again with 2.5mg. I felt just as bad the second time around. Start slow, we all react so differently to meds. I hope you find something that helps.

That's who I went to see also, are you going to Atlanta? I know he would rather have fresh muscle to test. Knowing I have a mitochondrial disease hasn't changed how I feel, but it's still good to know what I DO have after so many years of guessing. 2009 was the year of diagnosis for me, both my dysautonomia and mitochondrial. I hope everything works out for you.

My muscle biopsy was for mitochondrial testing and I had general anesthesia for mine. It did take about two weeks to not walk with a limp, but it was well worth it because it gave me a definite diagnosis. Good luck with all of your testing.

It's funny this toppic just came up, I was going through the same process....should I get one or not. Last Monday I asked my PCP and she said no problem at all. There are too many days if I make the walk into work/shopping/some event that's all I have the energy for.

I got mine at Walmart, $25 and they come both with a strap or without. The one I use is a watch I can wear to work, takes your pulse from your finger. For the money I thought it was worth a try and it works great.