Wait...wait a minute.. seriously what is going on?

Another unsolvable puzzle.
Soooo remember how I said the specialist approved IV hydration when I'm desperate? M was there, he heard it too! Well he didn't exactly relay that to my Drs. In fact, the opposite he apparently said.
And remember how I said they were going to give me prescription stimulants just so I could get out of bed on bad days? Yeah not so much that either.

The conversation this week went something like this:
Me to Dr #1 (GP): so can I get the stimulant prescription we discussed?
Dr#1: yes but you have to get it through Psychiatry

Me: ok, hey psychiatrist (dr#2)  can I get the ritalin we discussed?
Dr #2: yes but I need to check with Dr #1 to make sure it doesn't conflict with other meds you take.

me: ok...she'll say yes

Dr#2: ok Dr#1 says no. Risk of heart issues down the line. I will research and get back to you.

Me: but... she said... Whatever. Fine.

Me to Dr#3(cardiologist): ok so my prescription for a stimulant is held up right now pending approval. In the meantime how about we try that other med that increases my blood pressure to see if it works better than this one on my energy level? For the record I still think non pharmaceutical IV saline is worth a try...

Dr#3: you need to discuss Ritalin with your other Drs, I can't prescribe that. And I'm going with your specialist and agree IV saline isn't a good idea.

[This is also when I realized my specialist lied to my face]

Me:......

Ok.... What about the medication I actually asked you for?

Dr#3: I don't like prescribing that medication because it has potentially serious side effects. You can try it but I don't recommend it and won't give it to you without more blood work.[sends link with all heinous side effects listed]

Me: ok..... So can I have just the IV hydration for now then?
Dr #3: no
Dr#1: no

So, for those of you following this circus they won't give me a stimulant to help me have at least a tiny bit of energy because I may develop a heart issue in 20 yrs.
They won't give me the other BP raising med because it has dangerous side effects.
They won't give me simple salt water, used to hydrate millions of people daily, into my veins because.....



Crazy making isn't it?
So my psychiatrist is researching other options for stimulants....and we're waiting.

In the meantime Dr #4 (rheumatologist): wants a full panel of blood work due to new symptoms and this crazy debilitating fatigue. Maybe she'll do something.

The curse of multiple illnesses isn't the illnesses themselves it's the fact that each illness comes with it's own specialist. Argh.

Eggs with stitches

Persistent postural perceptual dizziness (PPPD), sensory ataxia, orthostatic hypotension, dysautonomia, pots.
Alllll of those added at stanford and not one has a proven treatment other than the pppd.
They're going to give me Adderall or Ritalin just to help with energy. The med to raise my BP seems to be helping the symptoms it should help. Otherwise "sorry, there's nothing we can do."
Super specialist sent his eval to my drs and we will go from there. 

 The orthostatic hypotension is being helped by midodrine to increase my BP plus hydration packs and 12,000 mg of sodium. Yep. I can't eat that much so I take salt tablets. 

For the persistent postural perceptual dizziness (PPPD), which is sort of like chronic vertigo, there is something called vestibular rehab, which means they need to retrain my brain that the world isn't moving even though I feel like it is. This explains why I randomly fall over, have no balance or equilibrium and am dizzy when in a car or moving a lot.

The sensory ataxia (with my eyes closed I have no idea where my body parts are in space and I can't feel all of my feet) there's nothing to be done but honestly that's not a big concern unless I have to take a drunk test. Cannot touch my nose or walk a straight line lol. Mitch said it was painful to watch me try to grab one hand with the other with my eyes closed and miss by a good 6 inches.

But the main one that he theorized could be causing the severe fatigue and body failure and weakness is myalgic encephalitis/ chronic fatigue syndrome. There's no fda approved treatment for it so my Drs will give me stimulants like Ritalin or Adderall just help the symptoms. The main cause as far as they know is inflammation of the brain. Nothing you can do about an inflamed brain apparently but it explains why avoiding inflammatory foods like gluten, dairy and sugar has helped so much. I don't actually meet all of the criteria, but he seemed to think that's what it could be.  It's basically being sentenced to bed for the next 30 yrs. I was really trying to avoid this particular diagnosis, and I honestly do not think this is it. Like I said I don't meet the criteria, plus my neurologist already told me that's not it and my fatigue can be explained by the dysautonomia/pots. The reason for the fatigue isn't my main concern. A treatment is. So the prescription uppers like adderrall or ritalin should help as well as the fact that he authorized hydration by IV when needed. 

I had hoped that he would have answers regarding treatment but all he did was confirm my current diagnoses, add a few and say basically that what I was doing/told to do by my kaiser Drs was what I should be doing. 

So, I realize now it was silly of me to put so much pressure on this appt. I was devastated when we left, but now I see that it confirmed that my Kaiser Drs are awesome and that all Drs are just human.