Questions about Mestinon, Midodrine, and Florinef

[frozenborderline]

I have an appointment with systrom in March that I may be too sick to travel to and am certainly too sick to do the icpet so I am curious about prioritizing and maybe rescheduling. Is there other stuff that systrom dows that would be helpful? I am too unwell to even standup so I don’t know if I could tolerate even the pre-appointment small exercise test he does. My doctor has already offered to try me on mestinon so if I really wanted to I wouldn’t need to see systrom to do that. Is the blood testing he does really helpful or the skin biopsy? Right now I may be dealing with cci and also with toxic mold and viruses, things that I don’t think systrom wxists. I do have orthostatic issues but beyond doing. Saline in a supportive way I feel like addressing the infections and immune issues will do more for me than exercise therapy and mestinon

 

[Rebeccare]

I'm sorry to hear that you're doing so poorly. And just getting to Dr. Systrom's office can be a bit of a challenge. If you've ever been to the Brigham, you'll know that it's a very loooooong hospital (I think it's about a quarter mile long!). The main parking garage is across the street from the main entrance and the ER, but Dr. Systrom's office is on the opposite end of the hospital--if you do go you might want to arrange for a wheelchair.

I wonder if it might be helpful to contact Dr. Systrom's office, explain your circumstances, and ask for guidance?

My doctor has already offered to try me on mestinon so if I really wanted to I wouldn’t need to see systrom to do that.

Maybe that would be a good option for you. The advantage of doing the exercise testing is that it gives you hard data about how you body is functioning and using oxygen. It is helpful to have those numbers then and observe what impact the Mestinon has on them, but I suppose it's not 100% required.

Is the blood testing he does really helpful or the skin biopsy?

He ordered a thorough battery of blood tests, but I don't think they're anything that a skilled rheumatologist wouldn't order. Let's see...for me the tests he ran were:

• Sedimentation rate (ESR)
• C-Reactive Protein
• Antinuclear antibody (ANA)
• SS-A/Ro antibodies
• SS-B/La antibodies
• Paraneoplastic antibody evaluation
• Total complement
• Anti-cardiolipin antibodies
• Rheumatoid factor
• Antinuclear antibody, titer and pattern
• Double stranded DNA antibodies

However, Dr. Systrom is not a rheumatologist, he's a pulmonologist. So I don't think he's going to do anything to address any underlying autoimmune issues these tests may indicate. I think he mainly treats people through drugs like Mestinon that stimulate the veins.

Regarding the biopsy, it might be helpful in determining whether the Mestinon can actually help you, since the theory is that nerve damage (which is what the biopsy is done to detect) contributes to right ventricular preload failure which contributes to CFS. However, that procedure is not done in Dr. Systrom's office--I had to go to Mass General for that (although the procedure is a quick and easy one that I think can be done at any hospital, I think that having someone who knows how to interpret the results is trickier).

 

[Gingergrrl]

My doctor has already offered to try me on mestinon so if I really wanted to I wouldn’t need to see systrom to do that.

If you are really interested in trying it, I think this is your best option (since your current doctor would prescribe and supervise) if you are too ill to travel to Dr. Systrom and do the testing right now.

Paraneoplastic antibody evaluation

I did not realize that other doctors were doing this right now. Was this the PAVAL Panel from Mayo and were you positive for any of the autoantibodies? It sounds like Dr. Systrom's blood tests were very thorough!

 

[Rebeccare]

Was this the PAVAL Panel from Mayo and were you positive for any of the autoantibodies?

I have no idea what the PAVAL panel is, but there is a note on my results that says: "This test was developed and its performance characteristics determined by Mayo Clinic in a manner consistent with CLIA requirements. This test has not been cleared or approved by the U.S. Food and Drug Administration." So yes?

I was not positive for any of them, although there was another note that said: "No informative autoantibodies were detected in the Paraneoplastic Evaluation. However, a negative result does not exclude neurological autoimmunity with or without associated neoplasia."

Pardon my ignorance, but what is this test? Should I be more knowledgeable about it??

 

[Gingergrrl]

I have no idea what the PAVAL panel is

It is the Paraneoplastic Autoantibody Panel that is done by Mayo Clinic's lab. Other labs like Quest (in the US) can also test many of the autoantibodies but it is not the actual PAVAL Panel and is not as accurate as Mayo's Lab IMO.

but there is a note on my results that says: "This test was developed and its performance characteristics determined by Mayo Clinic in a manner consistent with CLIA requirements.

I cannot quite tell from the way that note was worded if the panel was the Mayo Clinic panel vs. if it was done by Quest (or another lab?) but tested the same/similar autoantibodies?

I was not positive for any of them

Assuming the test was performed by Mayo, I would take the results to be correct and that you are not positive for any of the paraneoplastic autoantibodies.

"No informative autoantibodies were detected in the Paraneoplastic Evaluation. However, a negative result does not exclude neurological autoimmunity with or without associated neoplasia."

I think they are just trying to say that no test is 100% perfect and if someone appeared to have a paraneoplastic syndrome (especially if they also had some form of cancer or other diagnoses that matched), that it cannot be 100% excluded and could be worth running the test again in the future.

Pardon my ignorance, but what is this test? Should I be more knowledgeable about it??

I had no idea what it was either until a Neuro at Stanford tested me in early 2016 (he sent the blood to Mayo, I did not go to Mayo), and I was positive for two of the paraneoplastic autoantibodies. This was the turning point in my case that led to my treatments. I don't think it is relevant for most BUT at the same time, so few people are tested that I do think it is relevant for some percentage of people who just do not know it (b/c they have not been tested). It was very surprising for me and the Neuro who tested me told me that I would be 100% negative on all of the autoantibodies and he turned out to be very wrong.