I think this important but am blocked from the Pancreatitis community I had pancreatitis in 2018, brought up bits of my pancreas for a week!

[Adlon57]

After that week in hospital, been called an alcoholic, when a local hospital noticed I had had "pancreatitis" 🙄have not touched alcohol since 2014! Never had any painful effects or reactions since then. I have tried 4 times to get a relevant reply 🤞about US scans showing benign tumours etc but NOT actual state of internal organs Anyway I was having a US last week, they were looking for effects on my osteoporosis [rib cage structure] caused by supposed PC hormone injections, I mentioned that I had pancreatitis in 2018, but she said she could check the state of my pancreas, she did mention "fatty deposits near my liver" I have a high sugar level 88, another reason for exploration? Although those fatty deposits could be schwannomas/benign tumours, a major part of Schwannomatosis NF3 for which I have, more explanation is needed🤔

[Adlon57]

Anyway US scans do not notice the state of your organs but can notice tumours etc, which I have due to Schwannomatosis, fatty deposits near my liver, could be benign tumours which would affect the 'running' of my liver, thus 88 blood sugar, but would not notice the state of my pancreas, which I know was damaged in 2018, that is all what I am trying to say, I was blocked from 'Pancreas support', because I am not in any pain no "chronic pancreatitis" I am terminally ill so want to restrict my imput from etc, etc, but I honestly thought my comment inward might be of some use? Obviously HU thought better?

[Focusedmind in reply to Adlon57]

That seems odd that HU blocked you since you did have pancreatitis in 2018. I had it in 1996 from my intestines being nicked by a doctor while doing a colonoscopy. Although I am not in any pain now, I know there are certain medicines I cannot take because I have had pancreatitis. Therefore, I think your experience and knowledge might be helpful to someone else going through problems with the pancreas.

[Adlon57 in reply to Focusedmind]

That's what I thought, I had had a double seizure in Jan 2018, which turned out to be terminal, a CT scan in 2021 "the next one will probably be your last" [subsequently affirmed in Jan 2023]. I always thought having pancreatitis in Sept 2018, I had not drunk any alcohol since mid 2014, was a bit strange, and I said no subsequent pain? Maybe it was my brain telling me 'that's your lot'?🤔

[Focusedmind]

It sounds like you have valuable medical information you could tell the pancreatitis community if you were a part of it. And I firmly believe I got my type 2 diabetes from being nicked by my doctor while doing my colonoscopy, but it happened 20 years later. (I have controlled the condition now so that my numbers are down to the pre-diabetes stage.)

That, too, might be invaluable to someone in this community, as I couldn't sue that many years later. You would think communicating this sort of information is what the HU website is all about.

[Adlon57 in reply to Focusedmind]

My GP calls me "a one off" I have various unusual medical conditions, I myself have diabetes 2 but almost genetic, I was 'put' into isolation March 2020, when he casually mentioned "you have diabetes 2" had been on the verge for years, I have Schwannomatosis or NF3 only person in Ireland with it, medical students used to show interest in it, but now practically 'old hat' have mentioned it for years on HU and other sites, but just gave up🙄 Hunter very much agrees with me on that point! Such a rare condition have to actually meet anyone with the same condition😤

[Focusedmind]

Are you in chronic pain every day from the Schwannomatosis? The years with COVID must have been horrible for you having to be in insolation! 😢

Who is Hunter, your GP? I hope the Irish doctors have documented your case well enough so that it is on the worldwide internet medical establishment. After our experience with COVID, I think it is important to have these rare conditions recorded for the future of humankind.

[Adlon57 in reply to Focusedmind]

Ironically in full isolation in 2020, then February 2021 and AZ vaccine, by June practically under microscope, just as well casual CT scan found the skull injury, but went online about AZ vaccine, Guy's hospital lapped it up, actually they have noted that I do have Schwannomatosis, but absolutely no come back about that!🤞

[Adlon57]

Schwannomatosis or NF3 is a rare neurological condition NF1 , NF2 then NF3. I was not affected by covid but affected by AZ vaccine which reacted badly with the Schwannomatosis. Which was told to Guy's hospital in London.

Hunter is a member of this community.

[Focusedmind]

My daughter's friend was severely affected by the COVID vaccine. He couldn't get out of bed for at least a year, and all his body muscles were damaged. After several years now, he is doing somewhat better, but it has taken quite a lot of help from his wife and mother to recover him. He didn't have the AZ vaccine, but one of the US vaccines here. The company asked him not to report this to the media, fearing it would cause some panic in the States.

I am sorry the vaccine caused you to have a bad reaction. Although, I am confused by what you say above. If you don't have Schwannomatosis, then how could the AZ vaccine react badly to it?

[Adlon57 in reply to Focusedmind]

Thankyou Focusedmind👍 I at last got up the courage to send off a couple of emails to a couple relevant sites in UK and Northern Ireland, about my personal plight, and the general knowledge of Schwannomatosis NF3 throughout the land. I am tired of the expressions shown about the condition🥱😴 I probably do not have much time left, even some of the leaflets given out about the condition, I was able to update them with my own personal experience over the decades, a few little questions just to get their interest🤔🤔felt good actually giving them a good literal kick up their posteriors! Maybe this ignorant Irishman had something there?🤔

[Focusedmind in reply to Adlon57]

Good for you for taking these steps! 😁 I am glad you emailed the relevant UK and Northern Ireland sites about your own knowledge of Schwannomatosis NF3. I think the more we know about diseases, the better we can fight them off, especially when they are rare. I am sure you are quite knowledgeable and can offer much information for their records! And yes, sometimes stuffy old medical libraries and record halls need a good kick in the backside!! 🦵😆

You said, "The second schwannoma in 2008-2012 was the size of a walnut on my spinal cord, only partly removed." I assume it was too dangerous to remove all of it because of its location on the spinal cord. Does what's left of it give you any pain these days? 😢

I am happy that the third COVID shot (not an AZ vaccine) worked without giving you any problems. You were brave enough to try another shot after going through it twice with bad reactions. But then, being in isolation must have been horrible, as well. I have had four COVID shots and am prepared to get another one this fall. 💪

[Adlon57]

I do have Schwannomatosis the AZ vaccine caused schwannomas/benign tumours in my left arm where I had had the injections I lost the use of my left arm about 90% skin hanging off my left arm, heart flutters, left hand shaking etc, it has taken about two years for the left arm to recover, about 75% recovery. I have had Schwannomatosis since 1970, not rightly diagnosed as such until 2017, three surgical removals over that time, in 1970, 1997 and 2012. My third covid booster in 2022 was a success, no reaction at all, not AZ vaccine. Schwannomatosis or NF3 is schwannomas/benign tumours that form under the skin on the nerves on the trunk, arms, legs and hands, sometimes a coffee mark on the outer skin about 2 cm from the schwannoma/benign tumours is left. The second schwannoma in 2008-2012 was the size of a walnut on my spinal cord, only partly removed.

[Adlon57 in reply to Adlon57]

The second schwannoma in 1995-1997 was the size of a walnut on my spinal cord, only partly removed. The medical records for this operation were lost, meaning that any lessons about the benign tumours were lost, partly explaining why I had to wait four years for my third operation in 2012, a new GP in 2012 helped!