Just diagnosed with IgG4 disease - talk to me!!
Posted , 39 users are following.
Hi there! I have just been given the IgG4 diagnosis. I am keen to make contact with anyone on social media who reads this who has the same condition. My name is Nick, I am 55 years old, and live in Bournemouth with my wife and daughter. I have met the consultant who appears best placed to be in overall control of my treatment, Dr Neil Hopkinson. I am going to have a CAT PET scan to image any inflammation in my body in the next month. Last year I had a salivary gland removed, and the biopsy suggested a possible IgG4 disease. This January I had a biopsy in another saliva gland, which came back with the same diagnosis. There don't seem to be any support groups locally - although I hope I am wrong - which is a pity because they do exist for most other conditions.Hopefully I will receive one or two replies so that I can begin to understand how to cope with living with IgG4 disease - after all with a young family, wife and job,life must surely go on!!
3 likes, 76 replies
danielle24318 nick72107
Edited
hello, im 22 and have recently been diagnosed.
it has taken two years to get diagnosed, I have previously been diagnosed with severe nasal polyps, and sinusitis (this is ongoing ive already had two surgery this year)
auto immune pancreatitis.
peri and myocarditis.
I have currently got two cardiology specialists, my ENT surgeon and rheumatology specalist working together. Due to my age and female (they said it typically found in older men to myself)
due to the relapses of my heart conditon as this only lasted a few hours at a time my trops (bloods) always came back elevated and then setteled the following day. There was no abnormalities on my ECG, or Echos I was kept in over christmas for two months I had an mri clthat confirmed inflamation and scaring to my heart. I was put in a high dosage of steroids which i am still on but ive relapsed around 15 times during the three month period. I am due a PET scan but was wondering what the next step is as my doctors are holding back on giving me infomation due to my age and it being a life long condition.... help?
ROLAM nick72107
Posted
Hi, my english not good sorry. In March I found a mass under my armpit, it was the size of the lemon. I had mammograms, ultrasound, catscan and finally surgery. The mass had 3 biopsies, mass is IGG4 related and maybe suspicious for pre lymphoma. Doctor said he really doesn't know what is wrong with me. he is going to monitor me. Blood work was fine, same with cat scan. The mass was getting big by the day. thats why I had surgery in April when only emergency surgeries were done.
The surgeon that removed the mass sent me to a oncologist, he is the one checking me know.
Mass was big. almost like a fist size. I dont have any symptoms.
ROLAM nick72107
Posted
i forgot to say I only have dry mouth and it is driving me crazy. dr said they can give prenidsone for that but I will just. buy stuff over the counter
LasVegasChips nick72107
Posted
Hi,
Did you ever start an IgG4-RD support group? It is much needed and I am considering doing the same in the US. This condition is very misunderstood and frustrating for those going through the never ending diagnostic process. In the UK you at least have nationalized health insurance. Here in the US, I am going bankrupt due to the amount of meaningless doctors appointment where they seem to only want to chat and get blood samples....every week and almost everyday. I am exhausted. Please let me know of your progress with the support group.
nick72107 LasVegasChips
Posted
sorry for not replying sooner. ideally i would like to start a support group, and help others with the same disease. i just dont make the time for it yet, but one day i hope that i can.
corey42803 nick72107
Posted
hey mate you probably will never see this , but I have been diagnosed with igg4 this year would be kind of good to talk with someone that does aswell . I have pretty much been through the same as you multiple biopsys few months in hospital . also have a young family
nick72107 corey42803
Posted
hi, i have read your post. i am keen to talk and find out more. let me know how you prefer to communicate. im living in Dorset, England.
SoullessSoul nick72107
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I'm just diagnosed as well... By elevated igg4 in bloodwork. My rheumatologist refered me to a hematologist, but I can't find a hematologist who specializes in igg4.
Can anyone recommend igg4 specialists either in New York City area, or anywhere else who does remote consultations?
Xploring48 nick72107
Posted
I was diagnosed with IGg4 in February 2016. was Stage 5 (end stage) Kidney failure. in July of 2016 my wife and son gave me a book about autoimmune disorders and diet. I began a strict Paleo diet. For almost 5 years i have been improving. I believe gluten was a big problem for me. I was sceptical at first, but started feeling better within a few weeks, so continued on the diet. My doctors were surprised too. My kidney doctor said, "Don't stop what your doing!" For 5 years my kidney function numbers keep improving. At first i didn't think i could maintain the diet, but got easier the more benefit I saw. Good luck fighting IgG4.
claudette39598 nick72107
Edited
Hi Nick I was diagnosed in 2018 and there is a Facebook group by the name "Living with IGg4") which I am a member. I am sorry to learn about the removal of your salivary gland. The IGg4 is around my aorta and spread to my kidney and gave me a clot, but I thank God to be alive and was able to get some help before things get worse.
Hope you get through to join the group and good luck.
andrea64883 nick72107
Posted
Hi i have not been diagnosed with this but i'm suffering from a number of symptoms for last 7months and going through some tests but feel like i'm just going through the motions without anybody really taking me seriously.
I just wondered what your symptoms were with your salivary gland.For several months my tongue has felt swollen, dry and i have scalloping around the edges, the gp looked and said it was fine and felt fine. I was also being tested for thyroid and acid reflux so she said they could be causing it do wait and see. still feels the same if not worse.
In addition and this us what led me here, i am having really bad gastro issues which i'm convinced are pancreas related. currently under tests with GI doc and keep mentioning my tongue to him, he says he doesn't think its related but wait for more results because if my pancreas is damaged it can lead to malnutrition which can cause tongue swelling.
pancreatitis is some rare cases is caused by igG4.
trying to not self diagnose but intrigued
thanks
andrea64883 nick72107
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Also how are you doing, are you living a relatively normal life now? like you i have young family, 7 month old baby so i want to be well and be around for vert long time
andrea64883 nick72107
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Also how are you doing, are you living a relatively normal life now? like you i have young family, 7 month old baby so i want to be well and be around for vert long time
mar34686 nick72107
Posted
hi there, my brother in law has the same diagnose. but his condition is worse. his body is not reacting on the treatment and now we are lokking for help because here in the Netherlands they wont treat him anymore because they are afraid to treat him. he has had complications. in our experience, the sooner you get diagnosed the better. good luck
gill88674 nick72107
Posted
Hi Nick and anyone else who suffers from IGG4,
My husband has been diagnosed with IgG4 by Professor Christopher Edwards team at Southampton hospital.
I was wondering if you have been successful in finding help and support for those suffering from IgG4?
I am really concerned about the impact of this disease on my husband's health - particularly his rapid unintentional weight loss.
He is literally wasting away before my eyes. The out patients department are investigating but any tips to help combat this symptom would be appreciated.