Doctorsrcrap: can't cry and frustrated

[Tom2020]

11 hours ago, Doctorsrcrap said:

Isn't thr mayo clinic only in america? 

The Mayo clinic are also in London https://www.mayoclinic.org/departments-centers/international/locations

My friend who went said they made everything super easy. I think you send your case history and they tell you over the phone if they think they might be able to help.

[Barry2954]

In researching my own health issues, partially caused by the psychiatric meds, I have learnt about the effects of high ammonia levels in the body. I think that you may well be able to eventually completely eliminate your pain by lowering those levels. It's amazing the damage which it can cause throughout our bodies. The psych meds likely raised your levels of ammonia by altering your microbiome and putting additional stress on your liver. There really isn't much good information on the internet about how to lower ammonia levels so I have been having to do a bit of research to try to find out how to try to fix it. Certain pathogenic bacteria in our microbiomes produce ammonia so it's essential to take plenty of prebiotic foods, to encourage the growth of healthy bacteria, while also taking foods with antibacterial properties. There is also a substance in some foods, called palmitoylethanolamide, which helps to kill pathogenic bacteria while encouraging growth of healthy bacteria. Try to avoid too many foods containing retinol. A form of vitamin A called retinol palmitate is stored in liver cells, which are altered in order to store it. This means that they don't continue to function as normal liver cells anymore, so resulting in a condition called non-alcoholic fatty liver disease. This condition raises the bodies levels of ammonia. Most forms of supplemental vitamin A contain retinol palmitate so be very careful of which supplements you take. Meat and animal products, like dairy, contain retinol so will contribute to the liver storage.

[Doctorsrcrap]

My CT results are back...... but they won't tell me the result! 

[ShantyO7]

15 minutes ago, Doctorsrcrap said:

but they won't tell me the result!

That's crazy, why not? Do you have like a patient portal account that you can look at them yourself?

[Doctorsrcrap]

No because it's private not NHS! 

The secretary messaged me saying the Dr would like to reassure that nothing sinister was found ie cancer however he will need to discuss the results with you at your next consult. That's 2 weeks away. I want to know now! I don't want to waste 2 weeks. 

[Barry2954]

3 hours ago, Doctorsrcrap said:

My CT results are back...... but they won't tell me the result! 

It is apparently possible to ask for a copy of scans and results to be sent to our own email accounts when we have the scans performed. Not all imaging companies allow this but a lot do. If you don't ask they will never tell you whether they do it or not. Unfortunately I didn't know this either when I was having all of my own scans done so I was in the same boat as yourself, being forced to wait for doctors to tell me.

[Catwoman73]

4 hours ago, Doctorsrcrap said:

My CT results are back...... but they won't tell me the result! 

 

That's ridiculous.  They can't do that to you.  It's cruel.  I can't believe they would drop a teaser when it comes to your health.  Terrible- I would certainly kick up a lot of $hit about that.

[Catina7]

4 hours ago, Doctorsrcrap said:

My CT results are back...... but they won't tell me the result! 

 

Don't we as patients have the right to know immediately??  I know in the United States they passed a law stating as such.  

[Barry2954]

3 hours ago, Catwoman73 said:

 

That's ridiculous.  They can't do that to you.  It's cruel.  I can't believe they would drop a teaser when it comes to your health.  Terrible- I would certainly kick up a lot of $hit about that.

Clinics generally won't allow patients to be notified over the phone about results from any tests or imaging because they don't want to be held liable for any mistakes which could be made by receptionists or adverse patient reactions to bad news. That seems to be the reason that they sometimes allow you to request the copy of your scans from the imaging company, in order to make it a personal choice.

[Catwoman73]

3 minutes ago, Barry2954 said:

Clinics generally won't allow patients to be notified over the phone about results from any tests or imaging because they don't want to be held liable for any mistakes which could be made by receptionists or adverse patient reactions to bad news. That seems to be the reason that they sometimes allow you to request the copy of your scans from the imaging company, in order to make it a personal choice.

 

I worked in healthcare for 25 years, so I fully understand why they approach communication the way they do.  What I don't understand is dropping a teaser, and making someone wait.  That just aggravates a patient's level of anxiety.  The smart thing to do would be to just book the follow up appointment and don't say a word about the test results being back.  That is the kind and diplomatic way to handle this stuff.  Saying that the results are in but we can't tell you is just cruel!

 

Cruel, but not surprising... after working in the field for all those years, I have certainly seen more than my share of daft behaviour on the part of people working in the system.  That's why I take no crap anymore lol- if my doctor's office called and said that they have results, but I'll have to wait to hear them, I would be standing at their desk making demands as soon as I could get there!  😁

[ShantyO7]

Just thought I would throw this out there just in case... I just saw an article that a woman said that her doctors couldn't figure out what was wrong with her for years and come to find out, it was a compressed pelvic nerve. Have you been checked for that?? I linked the article so I hope you can view it!

 

It took me 11 years to be diagnosed with a compressed pelvic nerve. Doctors didn't believe my pain was real. (msn.com)

[Catina7]

50 minutes ago, ShantyO7 said:

Just thought I would throw this out there just in case... I just saw an article that a woman said that her doctors couldn't figure out what was wrong with her for years and come to find out, it was a compressed pelvic nerve. Have you been checked for that?? I linked the article so I hope you can view it!

 

It took me 11 years to be diagnosed with a compressed pelvic nerve. Doctors didn't believe my pain was real. (msn.com)

 

Certainly worth considering!  Great find!  👍

[Doctorsrcrap]

I cant read it. How did she get diagnosed and fixed?

[ShantyO7]

[Doctorsrcrap]

But who do I go and see?! Who will help me?! 

[ShantyO7]

12 minutes ago, Doctorsrcrap said:

But who do I go and see?! Who will help me?!

I'm in the US so I'm not sure. I guess you'd have to research to see if you can find a pelvic pain specialist. Maybe someone at the Mayo could help? We have a Mayo here in MN and that's where everyone goes when they have something no one else can figure out.

[Doctorsrcrap]

I cant find anyone 😕 

All I've done is research 

[Doctorsrcrap]

@Barry2954

How do you find out if you are insulin resitant? 

[Barry2954]

On 8/21/2024 at 7:28 PM, Doctorsrcrap said:

@Barry2954

How do you find out if you are insulin resitant? 

There isn't really a test, per se. The best way to get an opinion on whether you have insulin resistance is to ask your GP. There are tests which they can do in order to check your blood sugar and cholesterol levels. This will help the GP to give you an opinion on whether you have it or not. My own GP's always used to be certain that I must have had diabetes, despite all tests coming back negative, because of my own high levels, lol.

[Doctorsrcrap]

Is there never certain answers to anything. How is it we can send people into space. We can see planets billions of miles away and yet we haven't managed 5o figure out how to diagnose people. 

I get my reaults tonight from my ct scan and colonoscopy 3ndoscopy. 

I hope this has some answers or I quit 

[Barry2954]

4 minutes ago, Doctorsrcrap said:

Is there never certain answers to anything. How is it we can send people into space. We can see planets billions of miles away and yet we haven't managed 5o figure out how to diagnose people. 

I get my reaults tonight from my ct scan and colonoscopy 3ndoscopy. 

I hope this has some answers or I quit 

The trouble for doctors is that they are supposed to try to correlate all existing evidence that they have in order to try to come up with an opinion on what is wrong. That opinion is called a diagnosis but can turn out to be wrong. Personally I think that rocket science doesn't compare to the complexity of understanding how our bodies function. Nonetheless, from all the medical research I have had to search through, I get the feeling that the researchers aren't far from having solutions for many currently incurable diseases. However the lag time between them having that understanding and treatments or advice becoming available to the general public is likely to be decades. Hopefully it wouldn't take too much time between them gaining understanding of the diseases and reliable tests becoming available but we still have to wait for that time.

[Doctorsrcrap]

Update:

Conlonoacopy and endoscopy came back clear. 

However the CT scan did not. 

I am now being sent to a specialist who deals with the pancreas as mine looked abnormal on the CT scan. It could be nothing but suspected autoimmune pancreatitus. Need to do another stool sample as I had one that showed low pancreatic elatase and a blood test to look for pancreatic antibodies. 

 

Still waiting on my specilaist MRI of the pelvis result

[Catina7]

16 minutes ago, Doctorsrcrap said:

Update:

Conlonoacopy and endoscopy came back clear. 

However the CT scan did not. 

I am now being sent to a specialist who deals with the pancreas as mine looked abnormal on the CT scan. It could be nothing but suspected autoimmune pancreatitus. Need to do another stool sample as I had one that showed low pancreatic elatase and a blood test to look for pancreatic antibodies. 

 

Still waiting on my specilaist MRI of the pelvis result

 

I know pancreatitis can cause pain.  Do they think it could be the reason for your pain?  I really hope you can get some concrete answers.  We'll wait to hear from you regarding your pelvic MRI.  Thanks for the updates.  

[Doctorsrcrap]

I don't think it can cause buttock and lumbar pain that I have. Unless it's through deficiency caused by the pancreas. No idea. Wish I knew 

[Barry2954]

18 minutes ago, Doctorsrcrap said:

I don't think it can cause buttock and lumbar pain that I have. Unless it's through deficiency caused by the pancreas. No idea. Wish I knew 

If the pancreatitis has caused metabolic bone disease it could explain your pain.

[Doctorsrcrap]

Royally fed up now. 

Speciliast pelvic MRI came back bloody perfect. How is this possible?!?!?! 

The dr who did my ct scan said my pain must be nerve entrapment because a problem with the pancreas wouldn't cause this. So even if they find something is wrong with my pancreas that doesn't explain my pain. 

Eventhoygh surely malnutrition from not absorbing stuff could result in pain? 

I'm pretty much done now. I had hoped something would of come of one of these tests but it hasn't. 

I don't know where to turn. 

[Catina7]

3 minutes ago, Doctorsrcrap said:

The dr who did my ct scan said my pain must be nerve entrapment

 

It definitely sounds plausible.  There has to be some way to treat this though.  I'm sure you're not the first person to have this.  Have you researched treatment for this?  Is this what that woman had in the article that was shared with you?

[Doctorsrcrap]

I don't know because I dint really know what she had and how she got it diagnosed. What kind of doctor did she see? 

I saw a gyno who specialises in pelvic nerves. He is who ordered the scan. 

Without knowing more details from the article like what kind of speciliast they saw I have no idea 

[Catina7]

48 minutes ago, Doctorsrcrap said:

I don't know because I dint really know what she had and how she got it diagnosed. What kind of doctor did she see? 

I saw a gyno who specialises in pelvic nerves. He is who ordered the scan. 

Without knowing more details from the article like what kind of speciliast they saw I have no idea 

 

Looks like she saw a "pelvic pain specialist" and eventually underwent decompression surgery.  

[Doctorsrcrap]

Yeah that's a very broad area pelvic pain speciliast. I don't really know what that is. 

This guy I saw does deal with that 

[Doctorsrcrap]

I've now lost my ability to sleep. 

The fact I used to be able to lay on my front for relief has now gone.

For some reason now pressure doesn't have to even be applied to the area. It just feels like someone has thrown boiling hot scalding rags onto my glutes and it burns and burns. 

This is not doable 

[Tom2020]

I'm so sorry the pain has gotten worse. I can't imagine.

 

On 8/30/2024 at 4:09 AM, Doctorsrcrap said:

The dr who did my ct scan said my pain must be nerve entrapment ... I had hoped something would of come of one of these tests but it hasn't. I don't know where to turn. 

Are they following up on possible nerve entrapment?

[Doctorsrcrap]

No. My doctor said no idea and I don't know how to treat you. 

It's over 

[Tom2020]

If it is a trapped nerve it sounds like a nerve block (an injection targeted with the help of a tool such as ultrasound) is likely to confirm that really is the problem, and exactly where the problem is (and give you a few hours of pain relief).

 

Please don't give up. You have options. If I were you I'd call the Mayo Clinic in London and see what they think  https://www.mayoclinic.org/departments-centers/international/locations

It's easy to get that ball rolling. As a last resort there's also the drug you were considering, and surely other options too!

[Doctorsrcrap]

I tried the amitriptyline for several weeks and it did not help. I stopped it before I would have to taper off as I was not seeing benefit. 

I saw a pain speciliast who does nerve blocks and said he had no idea where he would need to inject because I target hasnt been identified. 

 

[Tom2020]

16 hours ago, Doctorsrcrap said:

I tried the amitriptyline for several weeks and it did not help. I stopped it before I would have to taper off as I was not seeing benefit. 

When did you try it and what dose?