Study linking CFS/ME to abnormality in blood pressure regulation

[Arius]

I don't receive many tests. I don't ask for tests, generally.

the doctor considers me 1) diagnosed; and 2) have nothing to offer that I"d willingly take.

And when the simply act of undertaking the appointment will make me sick, I don't wilingly sign up for them except under extreme conditions.

Rufous, I'm in the same boat. I live in Canada. I've had two different doctors and they both wrote me off. The first one said I had depression and refused to do anything beyond writing a prescription that I didn't want for SSRIs. The second one accepts my CFS/ME diagnosis and is far more supportive, but not much interested in experimental treatment options or tests. Honestly, I think he's the best I can do.

I did briefly see a doctor who specializes in ME at a clinic in Toronto, but she was so swamped with clients that, after 8 months on a waiting list, I was given a max of 3 visits and then cut off so others could see her. And all she did was tell me to keep doing what I was doing (avoid environmental toxins, eat well, etc). She was firmly of the "environmental toxins" camp and not open to hearing other theories. I live about a 5 hour drive away from Dr. Byron Hyde, but my understanding is that he doesn't treat people either - just documents their progress for research purposes.

I push for tests whenever I can, but am often declined, unless I can provide a clear rational... which requires tons of research, which is hard with my foggy brain.

 

[Arius]

It has been reported on this forum that quite a few people, those that have been tested, have (partially) empty sella ie pituitary destruction. The pituitary is linked by the vagus nerve to the hypothalamus and when an infection destroys usually a portion of the right side of the pituitary, it also destroys a similar area in the right hypothalamus.

This is fascinating information!

I should ask to get my sella tested.

What makes you think it's an infection damaging the pituitary and hypothalamus, and not, say, toxic amounts of cortisol?

 

[Rufous McKinney]

I've had two different doctors and they both wrote me off.

Well, my friend in Canada!!

In the 1990's I would periodically show up in a collapsed state at the doctor and I would state: must have Mono Again. They were never interested in the entire topic. "Your Stressed, Take a Yoga class". (No testing offered)
2000s: the OBGYN offers the Antidepressant for virtually no reason, with its lovely pamphlet with Happy Females. No Thank You!.
I pursued a "pain" I experienced...(like an ovary throb) that lead to referals and tests and ultimately: denial of further referrals and so I gave up caring to chase the pain. Why bother? And its gone anyway. And the medical indifference and the way you are treated in these offices...its hard to bear. Criminal Abuse.
2010s: New doctors who stare. Every visit she suggests I take an antidepressant. Offer no tests, nothing, no interest.
Three years I am harassed. So finally I simply agree to "try it". I was assured the Dry Mouth side affect would not come with this pill. That was not true. Doctor lied.
Zoloft: I was nearly killed. It made me so very sick and took three months to recover from the three days I took it.

could go on,

 

[Bobbi007]

@andyguitar It is my fourth day taking Amlodipine Besylate 2.5MG, generic for Norvasc.

I don't think this is going to cure my ME/CFS but if I can get this piece working better, maybe I can improve.

I have read over and over that patients like us tend to die earlier due to heart problems. My new cardio Dr told me he thinks our illness is viral and can attack organs.

If I could get back to being able to walk outside, grocery shop, and go fishing. . Maybe even the occasional concert I will be so pleased!

How did you do with the Norvasc?