Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

[heapsreal]

Curious if they found (or told you about) any abnormalities (empty sella syndrome, adenomas)?

And if you don't mind sharing: why were you sent for MRI of your pituitary?

Hi Scott, do you have empty sella syndrome?
I recently had ct scan has have had chronuc headaches all the time for last couple of months. Result was half empty sella syndrome. Alot of symptoms for empty sella syndrome overlap with cfs or maybe even caused by an infection??

Cheers

 

[valentinelynx]

@valentinelynx, I don't feel that I can give you symptoms of CCI b/c that was never my problem. Sorry. Yours,l.

That's OK, I didn't ask you for them... Perhaps you're referring to @tm999 's response to something I said, asking for symptoms?

 

[ScottTriGuy]

Hi Scott, do you have empty sella syndrome?
I recently had ct scan has have had chronuc headaches all the time for last couple of months. Result was half empty sella syndrome. Alot of symptoms for empty sella syndrome overlap with cfs or maybe even caused by an infection??

Cheers

Yes I do.

But I don't have headaches -- sound like you may fit with folks that get headaches.

I'm more inclined to think that a shrunken or flattened pituitary may have impacted my hormones, since:

(from Wiki)
"Hormones secreted from the pituitary gland help to control growth, blood pressure, energy management, all functions of the sex organs, thyroid glands and metabolism as well as some aspects of pregnancy, childbirth, breastfeeding, water/salt concentration at the kidneys, temperature regulation and pain relief."

I have blood pressure, energy management, thyroid, metabolism, kidney and temperature regulation dysfunction. And high testosterone, which is unusual for the chronically ill (I'm told). Maybe it's also why I don't have pain.

 

[heapsreal]

Yes I do.

But I don't have headaches -- sound like you may fit with folks that get headaches.

I'm more inclined to think that a shrunken or flattened pituitary may have impacted my hormones, since:

(from Wiki)
"Hormones secreted from the pituitary gland help to control growth, blood pressure, energy management, all functions of the sex organs, thyroid glands and metabolism as well as some aspects of pregnancy, childbirth, breastfeeding, water/salt concentration at the kidneys, temperature regulation and pain relief."

I have blood pressure, energy management, thyroid, metabolism, kidney and temperature regulation dysfunction. And high testosterone, which is unusual for the chronically ill (I'm told). Maybe it's also why I don't have pain.

I have low hormones. So it explains the diabetes insipidus, dhea and testosterone although im treating these. The constant headaches are my main concern.
Empty sella syndrom sounds as useless of a diagnosis as cfs unfortunately 😓

 

[heapsreal]

Yes I do.

But I don't have headaches -- sound like you may fit with folks that get headaches.

I'm more inclined to think that a shrunken or flattened pituitary may have impacted my hormones, since:

(from Wiki)
"Hormones secreted from the pituitary gland help to control growth, blood pressure, energy management, all functions of the sex organs, thyroid glands and metabolism as well as some aspects of pregnancy, childbirth, breastfeeding, water/salt concentration at the kidneys, temperature regulation and pain relief."

I have blood pressure, energy management, thyroid, metabolism, kidney and temperature regulation dysfunction. And high testosterone, which is unusual for the chronically ill (I'm told). Maybe it's also why I don't have pain.

Does make me wonder about sleep and growth hormone. I was in contact with a guy who got prescribed GH and he had cfs. He said the only thing it helped was sleep. After 12 months it was costing him too much so he stopped. A couple of years later his sleep was still fine. So i found that interesting.

 

[lenora]

My first diagnosis was a pituitary tumor and I had extremely low BP at the time. Medication controlled the tumor, but now that I'm much older (almost 74) I have very high BP, heart problems, temperature regulation problems.

If you don't have pain, I'd leave things as they are and control them as best you can. Kidneys are the main concern. Testosterone can be balanced.

At least I'd had my children before I became terribly ill, so that prevented difficulties in that respect. I don't know if I have thyroid problems or not....normal tests don't show it, but I know they aren't perfect. Still, I'm dealing with more than enough at the moment. Way too many doctors and too many tests. And everyone has to be a specialist. Doesn't anyone know the entire body any longer? Yours, Lenora.

 

[heapsreal]

Way too many doctors and too many tests. And everyone has to be a specialist. Doesn't anyone know the entire body any longer? Yours, Lenora.

Totally agree. Im sitting there telling my gp about the pituatory, then he starts googling and saying, oh your right, also right about such n such. I said probably why i have diabetes insipidus, a light bulb went on in his head, he starts googling, oh yes that could be right too. Funny thing is that he prescribes medication for my diabetes insipidus, struth!🤔

 

[lenora]

Hello @heapsreal.....I've suffered with this for way over 35 years.

One of the reasons this is so hard to deal with is the many, many specialists we have to see, and no one to put the puzzle together (a doctor that knows the human body). I can remember thinking about that all those years ago, and my internist actually took an afternoon off work and went to the medical library looking for answers. No computers then, but I'll give him an A+ for trying. My neurologist attended medical conferences especially dealing with CFS/FM (as it was called then). So some doctors aren't ignorant, just as confused as we are.

I gather that things aren't much better in Australia. There are simply no "right" answers at this time. Perhaps the Long Haulers will move some much needed money into research. I'm a member of another organization for some neurological illnesses I have. I can tell you that one of our best research teams is out of Australia, and that's been a huge help. There are so many people suffering from so many causes. It's very frustrating.
How do you perceive the organizations like ours to be in Australia?

Are you on any drugs for your pituitary tumor. I had one in the beginning and was on bromocriptine for many, many years. It controlled it nicely. There may be newer ones available today. Yours, Lenora.

 

[bensmith]

Im going to physical therapy tomorrow, i will be asking for traction. Anybody any idea on how much? On dr b’s paperwork it just says “pt choice”. Ill prob just saw to start low and slow, but in case the pt person asks.

 

[bensmith]

Just first traction section with physical therapist. Not noticing anything really. Are you supposed to immediately?

just read you should see improvement immediately. Dr b says 3 times, not sure if i will do another though. Not see any improvements i can tell.

anybody else see any later or after a second visit?

hope i dont have this, although i do have many of then symptoms.

 

[Strawberry]

@bensmith Chances are with being a covid long hauler that you might not. I haven’t yet heard that covid causes collagen breakdown yet. I definitely would do the two more therapy sessions, just to be sure. But I will let others chime in.

Edit to add many symptoms overlap the CCI/AAI due to the neurological issues we all have,CCI/AAI or not. Give it time, and this might save you the agony of MRI.

 

[bensmith]

Ok so this has been confusing.

i felt absolutely terrible at pt. Put into traction, did not help. Even had a bit of pem
In traction.

i come home, still feel bad. At some point yesterday, i actaully pretty good, rest of day before bed. I felt more ok for the first time in almost 6 months. I am confused. I go to sleep, wake up still feeling good. I then have...im not sure it was crash not like normal pem, but def some bad body stuff. Worse than norman. Maybe rebound/worsening. Or maybe delayed pem which i usually dont get, it was wayyyy outside my envelope.

no idea what to think of this. It didnt feel like adrenaline earlier. If i will feel good again today, I’ll up date this post. Confusing!

 

[RobeAnJa]

I haven’t yet heard that covid causes collagen breakdown yet.

Plenty of covid longhaulers, including me, have had collagen breakdown.

 

[bensmith]

@RobeAnJa what does it feel like?

 

[RobeAnJa]

@RobeAnJa what does it feel like?

All my joints feel loose and crack and pop in normal movements. I lose soft tissue around joints on hands, knees, elbows and feet. It feels like I’m standing on my heel bone. My neck is stiff and make grinding internal sounds when I move it.

 

[bensmith]

Sorry thats shitty. I had a bit of thst before, esp neck. Think one kf the disc might be popping out. And i start to faint maybe.

 

[Strawberry]

Plenty of covid longhaulers, including me, have had collagen breakdown.

Thats interesting! I hadn’t heard that yet, but stand corrected. Thank you.

 

[MikeC]

I know Dr. Bolognese prefer a supine MRI but what about Henderson, Patel and Gilet? I'm trying to figure out if I should do a supine or an upright MRI.

 

[Reading_Steiner]

Have read the blogs now from jeff and jenn ( saw her film but didn't know what happened to her following that ! )... shocking stuff. To think it was possible to cause this issue with a viral infection.... such a straightforward model that yields answers to all the questions.. unprecedented. Surely we are forced to consider here whether the vast majority of me/cfs cases are actually caused by these undetected changes to the macro function / structure of this area of the brain ? has this been debated here ? any studies ?

 

[rel8ted]

I know Dr. Bolognese prefer a supine MRI but what about Henderson, Patel and Gilet? I'm trying to figure out if I should do a supine or an upright MRI.

The type of MRI you get depends on the surgeon. Upright if it’s Patel. Your surgeon should be the one to order it so it contains the views they require.