Gold standard testing for dysautonomia / POTS / OI

[Learner1]

Wow, I didn't know you were thinking about a stem cell transplant! Where would you do it (if you did it, I mean)?

I don't know. I am researching it and don't want to make any snap decisions. But it seems like it might be a possibility. At my age, I am looking for a cure...

If you are seriously considering Rituximab though, I am happy to answer any questions about my experience and my next dose (#5) is in about nine days.

Thank you - I may just take you up on it

I'd be very hesitant to try Mestinon again and (our) doctor did not think it would be safe for me to try it again. I got respiratory depression (at the time) from only 1/8th of a pill. I am doing well with my current regime and not touching anything right now (even though I ultimately plan to slowly taper off Cortef in the future).

By all means don't rock the boat. It has helped me be able to stand in line at the grocery store without collapsing, though.

How much Cortef have you been on and how often do you take it? What's the decision process of getting off of it? I've gone from 30mg to 15-20mg but don't function without it...it'd be nice if my adrenals decided to work.. Glad yours are doing better especially with all the stress you've been under.

 

[Misfit Toy]

None of my autonomic testing ended up being useful (beyond absolute confirmation that I have POTS which we already knew). My QSART test was abnormal, but zero recommendations were given for that, and I was not even able to get a copy of the results.

The most useful thing (for me) was the autoantibody testing which led to IVIG and later Rituximab. But the TTT did not lead to anything useful in my case. I was already taking Atenolol and Midodrine for POTS and this did not change. I don't think the science is there yet to identify all of the different sub-groups within POTS (except maybe at a place like Vanderbilt)?

This is bad news and good news to me, at least. Like hearing I don't have it due to the Ansar testing. I was like ?? The cardiologist I went to last summer said I did have it. he measured it by having taken my BP sitting and standing and he just knew. But....he only prescribed Metoprolol which gave me a feeling of having an elephant on my chest and utter exhaustion.

What a web we all have to go through to be taken seriously.

 

[Gingergrrl]

I don't know. I am researching it and don't want to make any snap decisions. But it seems like it might be a possibility. At my age, I am looking for a cure...

Very interesting... keep me posted!

Thank you - I may just take you up on it

No problem and just let me know.

By all means don't rock the boat. It has helped me be able to stand in line at the grocery store without collapsing, though. How much Cortef have you been on and how often do you take it? What's the decision process of getting off of it? I've gone from 30mg to 15-20mg but don't function without it...it'd be nice if my adrenals decided to work.. Glad yours are doing better especially with all the stress you've been under.

I was started on Cortef in 2015 when I was having constant anaphylaxis to all food and we were desperate to add in anything to stop the allergic reactions. It was not actually prescribed for an adrenal problem (although my cortisol was low on prior saliva test). My original dose never changed and I have been taking 15 mg per day (10 mg AM and 5 mg in the afternoon) since 2015.

I have made two attempts to taper off of it (by just lowering the dose by 1/2 pill) but both were disasters. In the first attempt, I became allergic to food again within one week (but this was pre-IVIG before my MCAS had gone into remission). So we tried it again but the taper was too fast and I started to go into an adrenal crisis and my Endo told me to stop it b/c it was not safe.

The Cortef (while low dose) is almost like a full replacement dose for me and I am now in secondary adrenal insufficiency from it, per my Endo. So if we do taper it will have to be VERY slow over the course of a year. I would taper a sliver of a pill once a week and that is it. My Endo wants me off of it (b/c of long term risks) but my main doc and MCAS doc prefer that I stay on it. I want off b/c it has caused weight gain. I have been able to stop the weight gain but I have not been able to lose the weight that I gained, even when I only eat one meal per day.

 

[Gingergrrl]

This is bad news and good news to me, at least. Like hearing I don't have it due to the Ansar testing. I was like ?? The cardiologist I went to last summer said I did have it. he measured it by having taken my BP sitting and standing and he just knew. But....he only prescribed Metoprolol which gave me a feeling of having an elephant on my chest and utter exhaustion.

It's good you will have a TTT which should be more accurate if it is done correctly. I wonder if you would do better with another beta blocker or another class of POTS meds (if you do indeed turn out to have POTS)?

What a web we all have to go through to be taken seriously.

Agreed.

 

[Thinktank]

Thank you for all your replies and suggestions. I will need a few days to digest all the information and create a document for my neurologist.

 

[Thinktank]

I'm still digesting all the info and research between dysautonomia, Sjogren syndrome and MCAS. All your input has been very useful, but unfortunately most of the advanced testing isn't done in my country.

I've seen my GP today, and i think he has read the letter i wrote him last time because without any questioning he has given me all the referrals to specialists that i want to see, 6 in total! Not just some run of the mill doctors.
He now clearly knows i'm well informed, "you've done your homework", yeah no shit sherlock, that's all i've been doing the past 6 years.
It's going to be a busy year but finally things are moving again.

 

[Gingergrrl]

I've seen my GP today, and i think he has read the letter i wrote him last time because without any questioning he has given me all the referrals to specialists that i want to see, 6 in total! Not just some run of the mill doctors.

That is absolutely amazing news and I am thrilled that you will get to see those specialists!

He now clearly knows i'm well informed, "you've done your homework", yeah no shit sherlock, that's all i've been doing the past 6 years.

Your "no shit sherlock" comment made me laugh, but only b/c I really relate to you and spent about 3-4 years doing nothing but researching my illness and trying to figure out what was wrong with me and what could be done about it. I feel like I continue to leave no stone unturned and you remind me of myself. Except that you are doing this in a country where it is a million times harder to see specialists and get testing! Good for you.

It's going to be a busy year but finally things are moving again.

It will be busy but hopefully worth it. I reached the point where either the illness was going to kill me, or I would find something that worked, but I was not going to just sit back and do nothing (and I am not implying that you were, just explaining my own mind set at the time). Please keep us posted.

 

[Thinktank]

I picked up the referrals today, will make some appointments tomorrow. I will try to set the appointment for autonomic testing on a hot and humid summer day because that's when my dysautonomia is at its worst.

It's hot today (25 degrees celcius) and i'm feeling like death! I hate these warm days so much.

 

[Thinktank]

I had the TTT today, it tested pretty much negative because i had a rare "good" day in terms of physical dysautonomia! Mentally i was way off in the clouds today, the drunk feeling and brain fog really prevented me to express myself the way i wanted to.
The doc. was very dismissive even before i got tested. He pretty much blamed me for being bedridden and that i should "exercise". It also sounded like he made up his own concensus because he mentioned he'd only diagnose someone with POTS if the heart rate jumped 50 - 60 BPM or more.

I'm very disappointed but not angry, i'm so used to that arrogant and dismissive behavior now. A few years ago i would rage, now i'm just like whatever old fart, i'm firing you and will see another doctor. All the best to you.

I'm back home and my dysautonomia is acting up again, i feel weak like a wet towel and the vasodilation on my hands and arms is killing me, like acid is running through it.

I have an appointment for MCAS and Sjogrens syndrome soon. I've already been diagnosed with sicca-syndrome so Sjogrens might just be a posibility. There's comorbity between MCAS, Sjogrens and dysautonomia so who knows!

 

[Gingergrrl]

It also sounded like he made up his own concensus because he mentioned he'd only diagnose someone with POTS if the heart rate jumped 50 - 60 BPM or more.

I have always been told that it is a 30 point jump to diagnose POTS (not 50-60). At my worst, I had 100 point jump but that was several years ago before I was on a beta blocker.

I'm very disappointed but not angry, i'm so used to that arrogant and dismissive behavior now. A few years ago i would rage, now i'm just like whatever old fart, i'm firing you and will see another doctor. All the best to you.

I like this and it is a good attitude to have. I let so many ignorant doctors upset me in prior years and it would take me days or weeks to recover (and it was not worth it looking back now).

I have an appointment for MCAS and Sjogrens syndrome soon. I've already been diagnosed with sicca-syndrome so Sjogrens might just be a posibility. There's comorbity between MCAS, Sjogrens and dysautonomia so who knows!

Keep us posted after your appts for MCAS and Sjogrens and hoping they go well.

 

[Learner1]

There's comorbity between MCAS, Sjogrens and dysautonomia so who knows!

All of these can be autoimmune, so this makes sense.

 

[Thinktank]

I don't know what i was thinking guys, all these doctors have not been able to help me.
It was a very hectic and busy month filled with doctors appointments and testing to hopefully find some answers, oh was i wrong!

It's the same shitshow all over again. Most doctors really don't know much and anything out of their field is a total mystery to them. They can't connect the dots between my symptoms.

Neurologist (one of the few "specialists" with an interest in dysautonomia in my country):
- "If you have POTS your heart rate should be over 160"
- "Hyperadrenergic POTS doesn't exist"
- "You should move more, you're sick because you're in bed so often".
- "Your results are completey normal, we can't explain why you're feeling that way"

The basic title table test was a complete fail. The room was way to cool, i mentioned several times the room needed to be heated because my dysautonomia symptoms are triggered by heat.
I've never met such an arrogant maniac like that doctor ever before. It's all my own fault right?

Pulmunologist, very incompetent:
After various lung function tests, CT scan and inhalant allergies test.
"You have allergic astma, you should use a corticosteroid inhaler for the rest of your life"
Then i explained a bit about mast cell activation and if i could try a cromoglycate inhaler. "that's an old med. we don't prescribe anymore"..... Because its old it doesnt mean its bad. What a failed logic.
She competely ignored my symptoms of astmatic episodes triggered by exercise, a dry cough and a burning sensation in the lungs, and asthmatic episodes triggered by exhaust fumes, perfumes and chemical compounds - MCAS?
I should have been diagnosed with Asthma and Chronic bronchitis.
She clearly had very little knowledge about medications and biochemistry.

Gastroenterologist:
After a colonoscopy; "large bowel looks clear, nothing remarkable seen". The knob did not check my terminal ileum where the erosion and ulceration is happening. Now i've to go back to repeat the colonoscopy, great.

Immunologist / mastocytosis centre:
"Your tryptase is not elevated so there's nothing wrong with your mast cells". Then i explained the criteria for MCAS does not indicate that tryptase must be elevated, it's usually completely normal in MCAS. "If it's not elevated i can't diagnose you with a mast cell disorder". Then i asked about other metabolites, try urine histamine, prostaglandin D2 etc. "No, we don't do that, again your tryptase is normal so there's nothing wrong". Listen, i've trialed all standard medications and supplements for MCAS, anti-histamines, leukotriene inhibitors and mast cell stabiizers bring me relief. "Well, it must be something else then".
And that folks is the leading mast cell centre in my country. LOL.
The doc. also doesn't believe i have food allergies, despite my sypmptoms. They don't want to test me. I'm baffled.

GP:
Well, lets say he's the most misinformed "doctor" ever.

I've another appointment with a rheumatologist but i've canceled it. I'm fed up with the health care system here, bunch of backward inflated ego's. The bigger the ego, the less that person really knows.

I'm in a crash now because of the running around and accumuated stress, need some time to regain my strength.

 

[Mel9]

I don't know what i was thinking guys, all these doctors have not been able to help me.
It was a very hectic and busy month filled with doctors appointments and testing to hopefully find some answers, oh was i wrong!

It's the same shitshow all over again. Most doctors really don't know much and anything out of their field is a total mystery to them. They can't connect the dots between my symptoms.

Neurologist (one of the few "specialists" with an interest in dysautonomia in my country):
- "If you have POTS your heart rate should be over 160"
- "Hyperadrenergic POTS doesn't exist"
- "You should move more, you're sick because you're in bed so often".
- "Your results are completey normal, we can't explain why you're feeling that way"

The basic title table test was a complete fail. The room was way to cool, i mentioned several times the room needed to be heated because my dysautonomia symptoms are triggered by heat.
I've never met such an arrogant maniac like that doctor ever before. It's all my own fault right?

Pulmunologist, very incompetent:
After various lung function tests, CT scan and inhalant allergies test.
"You have allergic astma, you should use a corticosteroid inhaler for the rest of your life"
Then i explained a bit about mast cell activation and if i could try a cromoglycate inhaler. "that's an old med. we don't prescribe anymore"..... Because its old it doesnt mean its bad. What a failed logic.
She competely ignored my symptoms of astmatic episodes triggered by exercise, a dry cough and a burning sensation in the lungs, and asthmatic episodes triggered by exhaust fumes, perfumes and chemical compounds - MCAS?
I should have been diagnosed with Asthma and Chronic bronchitis.
She clearly had very little knowledge about medications and biochemistry.

Gastroenterologist:
After a colonoscopy; "large bowel looks clear, nothing remarkable seen". The knob did not check my terminal ileum where the erosion and ulceration is happening. Now i've to go back to repeat the colonoscopy, great.

Immunologist / mastocytosis centre:
"Your tryptase is not elevated so there's nothing wrong with your mast cells". Then i explained the criteria for MCAS does not indicate that tryptase must be elevated, it's usually completely normal in MCAS. "If it's not elevated i can't diagnose you with a mast cell disorder". Then i asked about other metabolites, try urine histamine, prostaglandin D2 etc. "No, we don't do that, again your tryptase is normal so there's nothing wrong". Listen, i've trialed all standard medications and supplements for MCAS, anti-histamines, leukotriene inhibitors and mast cell stabiizers bring me relief. "Well, it must be something else then".
And that folks is the leading mast cell centre in my country. LOL.
The doc. also doesn't believe i have food allergies, despite my sypmptoms. They don't want to test me. I'm baffled.

GP:
Well, lets say he's the most misinformed "doctor" ever.

I've another appointment with a rheumatologist but i've canceled it. I'm fed up with the health care system here, bunch of backward inflated ego's. The bigger the ego, the less that person really knows.

I'm in a crash now because of the running around and accumuated stress, need some time to regain my strength.

So frustrating! Sorry you had to go through this.

 

[Gingergrrl]

It's the same shitshow all over again. Most doctors really don't know much and anything out of their field is a total mystery to them. They can't connect the dots between my symptoms.

I'm so sorry you went through all of this and it reminds me of my experience with a series of horrible doctors during the first few years of my illness when I was trying to figure out what the heck was wrong with me.

The bigger the ego, the less that person really knows.

I would agree with this as well.