shoegal

I'm confused, but they thought I had MS for 20 years and I have dsyautonomia and maybe Mito, it's so odd to docs and I have eye issues!

I've never heard that! but zyrtec doesn't make you sleepy?

why are you guys taking this?

But would thermotabs help if you are already having 2,000mg of salt a day + 1,000 of potassium?

I had an old script from my old EP for Midodrine, so I figured now I have insurance I could try it (if I get up the nerve!)

My last neuro appt the doc did an appt for thermotabs. He wanted to try them first since Florinef would lower my potassium which is usually on the low end.

What confused me first was the thermotabs has 180mg of salt + 15mg of potassium. Basically a cup of milk has more of both, a lot more.

I'm already salt loading and having extra potassium to try to get that up, he thinks the thermotabs has more, how?

Well the insurance covered the Midodrine but said Thermotabs are not a med, and not proven to do anything useful.

Thought it interesting they chose $210 option vs the $11 option

he said I have had enough testing. Ummmm Ive had some labs. a yearly MRI (for a tumor). Not really a lot of testing to me. He didn't even do the BP checks etc. the cardio does.

Maybe he was having a bad day? I don't know. I know I went through severe traffic to get there and they wanted me there early. When I was running late they didn't say 'hey it's Ok he's running late anyway" they told me I had to rush.

Was 10 hours to get up early, get there, have lunch and drive back. A long day to me.

how do you get the pill to 1.5mg? how do you cut it like that?

their new autonomic neuro

I just got my script from my old cardio filled, also have a med fear, I always end up with side effects. The list for this med is long and yuckie too. So it worries me.

Hope it works for you

did they do an echo? my IST was already in full swing at that age, I couldn't do sports due to it

The doctor was running very late and was very rushed. He ordered me thermotabs vs my current salt loading/potassium pills. He says this is better, so I'm doing now 2,000-3,000 salt + 1,000 + of potassium. I should go to 180mg salt and 15mg potassium?

He ordered a few labs, stuff I've only just had done. So far they are "in range" but the ranges dont mean a whole lot. Just basic stuff like b-12, vit D, ferritan. All just done.

When I asked about all my medical problems which are autonomic plus a lot more and other docs have said they think it is mito. He said, well you know you are aging, maybe this is just you are getting old. I'm 33.

So if I can't walk, My BP is very low esp when I stand, I almost pass out daily and all the other issues are from "being old"?

I expected more info and more understanding. I was disappointed esp given the long drive there and back

I'm scared of this test now, I can be 64/40 already at home, what if they get you too low and you can't get it up? what is the need for the test

they did flights for kids needing to go to hospitals, angel flights are they called, private jets people usually offer up to help, may be an idea? Esp if you have money towards it to

I don't need more headaches :-( I never herd of every other day though, and I get low potassium even with high pot foods so been iffy trying the med

the biopsy was +?

now they do DNA testing, not cheaper though

I have an issue not processing ketones, which could be linked to a FOD or just another disorder, all under the umberlla of mito

I may have a FOD as well, did the lab result say which ones you may have? they should as every elevated acylcarnitine is linked to different disorders

a change in diet and carnintne may help (the script version)

what is anp? i'm confused, but get pain there and low sugar

He also tried to say it was "just normal female anxiety issues"

The nurse said something too about no P waves for the tach

I asked if I could have Sinoatrial nodal reentrant tachycardia, they laughed me off, maybe I was right?

Hey Shoegal! Yes atrial tachycardia is one of the more rare forms of SVT. Do you know what type of atrial tachycardia you have?

I actually work in cardiology, though I cannot give you advice. I can tell you though that depending on what type of atrial tachycardia you may have there is a potential for decompensation into heart blocks (which are dangerous). This is just my personal opinion, but for me personally, I would be very cautious of any cardiologist that would send me away with IST and atrial tachycardia. These are not normal rhythms and they do need to be monitored and treated if possible. Any type of tachycardia (POTS included) can lead to an enlarged heart called Cardiomegaly. This in turn can lead to heart failure and a host of other life threatening issues. I'm not saying that to scare anyone, just to create awareness that tachycardia is not a benign arrhythmia, and does need to be treated.

They didn't say what type of atrial tach, it's usually short though although have gone to 190 instantly and stayed there for 20 mins (not fun) The last month my sinus tach has been bad, I have low BP so they cant up my beta blocker

The cardio got mad I came in for the results, said there is nothing to be done for either, they are fine and I was wasting his time, he is dismissing me from the practice, the only cardios in the county.

I asked for a copy of the strips, no idea if my PCP can tell which type of atrial tach it is though.

atrial tachycardia is rare? I have that + inappropriate sinus tach, doc said both where safe and meaningless and told me I don't need a cardio anymore

I would be less confident on B12 if this has been a long term issue. That said, I can see why your doctor would err on the side of caution and start B12 injections just in case because there is no downside.

When I ran my B12 levels very low, I did get some tingling and numbness but only at the very late stages of the deficiency which I think is the normal pattern of events. I generally felt very ill and had gradually deteriorated over about 18 months with ever worsening POTS symptoms. I don't know if that fits with your recent health issues.

If it is B12, I reversed the deficiency in less than a month but the neurological symptoms arising from nerve damage took about 3 months to resolve. Again, I think that is a pretty normal version of events.

so I'm not sure either, they think I may have mito and this could just be mito, I can not stand this!!!!

and of course my BP was fine for the visit and it's 75/49 now.

I just don't know why all of a sudden BOOM severe tingling

any ideas?

I have had some mild numbness/tinglin of the arms and legs for 20 years, 2 days ago I started getting severe numbness/tingling in my back/chest/arm and now it's my whole body, it's driving me CRAZY

PCP said maybe low B12 and gave me injections to try

it's really really bad, and everywhere, any ideas?

have you looked into mito?

I usually feel when I have rushes and didn't have those symptoms at all that night. I just don't get why I dump fluid my body needs so badly, it baffles me and not sure how to fix it