Birdlady

I could make it to Cleveland Clinic, but my negative experience in another department makes me hesitant to give them anymore of my money. Do you have any experiences with the mito department? If you need to private message me, that is fine.

My urinary amino acids and organic acids were really messed up, so that is quite interesting yours were all normal.

As soon as I start to take any thing on the mito cocktail (coQ10, l-carnitine or B6) I immediately get irregular heart beats. It's really scary, so I've been reluctant to treatment myself with them. I've tried several times too.

Despite high normal lactic acid in my urine along with many other elevated amino acids and organic acids, my CK and lactate were normal in blood. I'm probably going to abandon the idea of mito for the time being. I refuse to do the muscle biopsy and I have no way of getting down to Atlanta to see Dr. Kendall. It's not an easy thing to diagnose and I haven't seen many people even feel better with the mito cocktail...hmm Makes me wonder why!

Did either of you have urinary amino acids/organic acids done? If so were any of your results elevated?

Thanks

Thank you everyone Its nice to talk to everyone who understand.. I did have the table tilt test and he said I was perfect the whole time. I need to clarify My heart rate gets high while both sleeping and both exercise. I have had it even go over 200 while asleep. Yesterday my husband was doing so yard work so I wanted to help, I fill so useless at times. So I thought I would move the small brink that were in the shade. After moving maybe 5 and mind you im not moving im just throwing them my heart just start racing so quick and I cant breath that good. I guess the best way to describe it is you cant take a full breath in. Also I was feeling the extra beats starting to kick in, I just hate that feeling.

Have you been checked for atrial fibrillation? What type of heart rhythm is happening when your HR is that high? Sinus tachycardia? SVT? You said you had a holter monitor and it caught 300HR's. This should have been figured out then. I'd get copies of all of the reports from every single test you've ever had done, so you can see for yourself what is going on. Doctors don't always relay information to us patients, so we have to be our own at times. It stinks, but it's true.

With a normal tilt test, then you don't have POTS. Something else is going on and I hope you can find a doctor who can give you some answers.

The only suggestion I have is trying to eat a light protein snack just before bed to see if that helps. It could be low blood sugar waking you up or causing an adrenaline surge.

Yeah I'm pretty much on my own. I'm not going back to where I had these done. It took about 15 phone calls, 9 weeks and me screaming at the secretary to get these results from them. Why torture myself with that again?

Ahh okay so <20 dopamine is a normal result then. I guess they are only looking for high results with a lab range like that. I wasn't given any lab ranges, so I didn't realize.

I was told by the nurse that normal people's catecholamine levels double upon standing, but anymore than that and it's abnormal. I have no idea if that's true if your baseline is high though. I'd imagine not. Although if someone has a high baseline, I'd suspect a bad sample first. Were the lights dimmed and the patient allowed to be supine for 30 minutes in a quiet environment etc. According to this page I bookmarked a long time ago standing NE levels >600 are quite common in POTS patients. Hmm, so I guess I'm pretty normal for a POTsy! lol

Yeah I was really confused about this too. I did a search on the forum and honestly didn't see many catecholamine results posted. There is another person on here who had non-detectable levels of dopamine...I wanna say Arizona girl? Sorry if I got that totally wrong! lol

Epinephrine is only made in the adrenals, so the fact it raises a little bit, tells me they are still doing something. Not a whole lot but something! Norepinephrine is made in the adrenals and the nervous system. Somehow dopamine is involved, but off the top of my head I'm not really sure!

Yeah that's what I thought too (NE being made from dopamine), so I wasn't sure how that was possible. The interesting thing is don't have the hyperadrenergic form of POTS as my BP basically stays nearly the same when I stand up. I have to get a hold of my local EP to see if he has any input on these results.

TY for responding. You have no idea what I had to go through to these results today...LOL It's been an interesting day.

Here are my results finally. I was wondering if anyone knows what the nondetectable levels of dopamine mean. Is it even significant at all? Thanks

Supine

Dopamine <20

Epinephrine <10

Norepinephrine 125

Tilt

Dopamine <20

Epinephrine 22

Norepinephrine 613

Thanks everybody. Interesting ideas! When this happened the first couple times, my friends dragged me to the ER and they would check my potassium and take an EKG, so I'm assuming that rules out angina or potassium deficiency. I take those Flintstones vitamins... do you think that's enough vitamin d?

I got to mayo on september 8th. I'm hoping they don't just tell me I'm fine too, because then I'd seriously have no idea what to do.

Don't assume this. I didn't know my potassium was low until I got the results from the hospital myself a few months later! They didn't even bother telling me they were below range. Doctors are notorious for this stuff as I've had this happen to me more times than I can count. I have to take rx potassium to keep my levels up, so a Flintstone vitamin probably isn't enough if you are low. For vitamin D, it's important to check it first before supplementing. The D3 form is better to take than the D2 form.

In addition to vitamin D, I would also get your potassium levels checked especially if you are taking florinef or anything else that will waste potassium. The important thing is that even if the potassium is "normal" but at the bottom of the range, that can be low enough to cause chest pain in some people.

I went to the ER once because I was having this terrible chest pain that would not go away for 2 weeks. Got my electrolytes checked and sure enough my potassium was 3.3! I essentially went to the ER for low potassium.

Thank you! I needed this thread too. I Just had one of the worst experiences at a local urgent care tonight. I went there because I had been experiencing an increasing number of PVC's, but it wasn't ER level yet so I just thought I'd get it checked out. The doctor was downright patronizing. Telling me that I needed to get over "POTS" and find a job that I can do so I can be "part of a team". /sigh This guy has no idea what POTS even was...He kept saying Paroxysmal tachycardia syndrome and I had to correct him each time.

Things POTS has stopped:

-Having a family. I really don't think it's going to happen at this rate. How could I ever take care of a child?!

-Having a job. Once again most jobs are simply too demanding on me. Standing/lifting and bending down is just too much for me and to have to be somewhere on a schedule isn't possible most days.

-Having friends/social life. Most people don't understand your limitations so you just stop getting invites to events or outings.

Thank God my husband is understanding with all of this which is invaluable though.

Yes I used to get terrible drenching night sweats, but honestly they sort of disappeared on their own over time and I'm not sure why. I think florinef helped though.

Yes please let us know how this works out for you!!! I would have to agree with the needles. My body would immediately freak out at that...

I'm sick and tired of dealing with western medicine and incompetent, clueless doctors. I went to the local urgent care tonight because I've been having non-stop PVC's for about week now and the doctor told me that my POTS is from not having a job and not being "part of a team". /sigh I am soo sick of being treated like I'm insane or something.

As far as I know the treatment is usually large doses of vitamins. Specifically the "mito cocktail" which you should be able to find through google. I have to warn you though, I started taking low doses of vitamins on my own and I've had PVC's every single day since. I stopped them to see if it would go away and it hasn't yet! Ugh...so do so at your risk.

I found a link for you

http://www.mitoaction.org/blog/mito-cocktail

Very interesting! Thank you very much Todd!

The gold standard today is fresh tissue muscle biopsy, and they'll not only rule out the known varients but also look for dysfunction in the 5 complexes that make up the respiration chain. The best place to find doctors that deal with mito patients is to go on MDA.org (mitochondrial disease is an MDA disease) and find the closest MDA office. Check out both UMDF.org and mitoaction.org each has great information, good luck finding your answers.

Cleveland Clinic says it's not anymore.

Myth

A muscle biopsy is the "gold standard" for diagnosis of mitochondrial disease.

Fact

Although the muscle biopsy is a powerful diagnostic tool, it should not be considered a "gold standard." Examination of a biopsy includes microscopic evaluation, enzyme testing, and genetic testing. Although all U.S. labs that offer muscle biopsy meet strict laboratory guidelines, there is no agreed-upon standard approach for enzyme testing. Furthermore, a muscle biopsy with full analysis costs well over $10,000 and poses both surgical and anesthetic risks. In some patients, the diagnosis can be made based on clinical symptoms and a positive blood test (identifying a genetic mutation) or a combination of clinical findings and other non-invasive testing -- in either case, a muscle biopsy is not necessary. Finally, since biopsy results usually do not alter the long-term outcome or treatment considerations, some specialists and patients choose to treat without the need for a muscle biopsy.

The problem I'm finding is that you need a ton of tests done. One mito doctor I contacted a few weeks ago told me I could check Pyruvic Acid, Lactic Acid and CPK in blood. She warned me though that even if those are all normal, it doesn't mean you don't have a mito disease. However she said if any of those tests come back high, then it's pretty much guaranteed something is not right. I'm still waiting on the results of those tests.

I had urinary organic acids, fatty acids and amino acids tested, but don't have a doctor that knows how to interpret them.

The "gold" standard years ago was a muscle biopsy but that's changing from what I'm hearing...The results aren't always conclusive either.

Here's a link that I found through my research you might find interesting.

http://my.clevelandclinic.org/disorders/Mi...l_Diseases.aspx

Yes I experience this in the heat and I normally don't have much muscle pain or problems on a daily basis.

When new symptoms appear after a head injury, I'd first suspect a possible pituitary problem. It could have been damaged and/or shifted as a result of the force.

I'm not a fainter!

lieze,

With my experience, I would not take no news as good news. I'd take no news as no one has even looked at your results/chart. I am serious too. At my appointment, the doctor assured me that I'd have a report within 2 weeks of my appointment. It will be 7 weeks this Thursday. Every time I call, I just keep getting bounced around. "oh you need to talk to a nurse". Then I talk to a nurse and she says, "oh no you need to talk to the secretary." No one wants to take responsibility for the fact that my report is missing. Without that report I can't schedule follow up tests (that I'm probably not going to have done there now) and I'm suffering with 160 HR's in the middle of the summer. /sigh The one nurse told me that things were just missing from my chart and that she'd talk to the doctor and get it "expedited". That was 4 weeks ago...Obviously this means nothing and is a way to get their patients off the phone.

their website says they have an ombudsman, where you can call and complain or mail a letter.

Wow thank you for telling me this. I had no idea that existed haha! This is probably about where I'm at. I'm sick of calling the department to just get told that it will be looked into. I never get called back even when I'm told someone will get back to me.

It's quite pathetic really that with all of our health problems, we have to stress over incompetent doctor offices. Like I need to add anymore stress to all of this!

Hi everyone. I am not naming doctor names or anything as per forum rules. However, I was wondering if anyone else has had problems with getting reports/phone calls back and explanations from their doctors. I'm getting to the point where I'm about ready to just give up on them. The secretary is either avoiding me or the messages aren't getting passed along. I don't know who or what to believe anymore.

It's been 46 days since my appointment and I've gotten NOTHING out of them. I have no finalized report, no additional tests scheduled, no medications. Absolutely nothing. I might as well have not gone there because they haven't added anything to further my care.

Is this the norm? I am not happy with them at all.

As another poster recommended, just go to wal-mart and buy the ReliOn brand meter. Their test strips are WAY WAY cheaper than the other brands. Don't get suckered into buying the other brand meters or you'll be forking out $50+ for the test strips. Meters are cheap, test strips are not. That's how they get you.

No matter how simple you think the test is, always ask to get copies of your labs with the lab ranges. Google is absolutely amazing when it comes to information on regularly run tests. Results can be blatantly out of range and they will say "it's good" or "good so far". I've had this told me to over and over again especially when it comes to thyroid, B12, electrolytes and complete blood counts. As for your thyroid being "normal" unless you are seeing a natural doctor, I can guarantee the doctor only tested your TSH which is a pituitary hormone NOT a thyroid hormone. You need to get your actual thyroid hormone levels checked, which can be a rather difficult endeavor with a PCP or endo.

You need to get all of your records and start looking stuff up on your own. I'm just trying to save you from running around in circles for years and years.