Hello – looking for any food links regarding Vasculitis – Wegners disease – it’s such a new diagnosis – and also very difficult to research – any ideas ?
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@mswanda Good evening mswanda, I had previously spoken with another person on the Mayo Forum whose husband had several seizures and later was diagnosed to have Wegener’s disease. My youngest son keeps his illness private but he has had continuing seizures After quite awhile while his doctor was trying to find out why, a new doctor has taken 3 biopsies along my son’s left shoulder near his neck. He has planned his funeral and is giving his dearest possessions away. He does not want me or anyone to talk to him about it. I lost my dear husband six months ago and now my grieving includes my baby, my last of eight children. I cannot hold him and console him and my heart i breaking once again. I buried his brother who died when hit by a hit and run driver never caught in 1996. Now my youngest son is ill and preparing to die. Is there any dis ease that mimics Wegeners that is non lethal? I am grasping at straws? Thank you for anything like this that a dear one or yourself has suffered.
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I am so sorry for your loss and private grieving. It is so hard to lose someone you love dearly. We have Lynche’s Syndrome a mutated cancer gene in my family. I have had to give them all back to God. My daughter was 29 4 days after her Birthday. I’ve had Cancer too. My daughter told me about 3 weeks before she left this world that sometimes God needs an Angel home sooner than others. If you need some one to chat with let me know. Hugs and prayers
Welcome to Connect, @skunklady13.
It is incredibly hard to lose someone you love and it just isn’t right to have to say good-bye to our children. Thank you for sharing your story with @emmur16 and @mswanda.
You and your family are in my thoughts and prayers. I hope that you can find a place to express your loss and grief. Perhaps you can find a support group in your community. Sharing is an important part of any loss experience. Take care of yourself.
So hard to be the spouse or parent ,brother or sister etc to be the one
that tries to keep living after their death. My husband died in July of
2009 and my 37 year old Son in Nov 2009. Both were unexpected and no
suffering which is good. However I did not get to say I love you and always
will. I had always made sure that was the last words I said so I knew they
knew. My daughter being so sick from the immune systems keeps it on my mind
everyday it could be the last for either and love all that I can.
Your story is similar to mine but no one can compare the sadness, loss and grieving one goes through when the love of their life has gone and their children as well. This grief coupled with losing one son to a hit and run driver (never apprehended,) and not six months since my Emmanuel passed, is the devastation I feel at the prospect of losing my youngest son who is the baby of my family of eight.
He has prepared his funeral and is giving his prized possessions to (so far) a rifle belonging to his late father. He is a stoic boy, the same as his father and he keeps his sorrows and fears closed inside his heart. I cannot hold him and grieve with him and give him my support. He would not want that of me. He has seen to it that his wife and two sons will be all right. He is a wonderful father to his two sons and they are a credit to being raised well.
I believe I wrote to you recently, not knowing your tragic story beforehand. The last I knew my son had had three biopsies all on his left shoulder blade near his neck. Since them he had gifted his brother with the gift that “almost knocked over” his brother. Evidently the biopsies just solidified his realization that he has a lethal disease.
Every story I have heard on our Forum about Wegeners and associated diseases do not give a happy forecast of what a victim may expect for life expectancy or the treatments that do so much damage to sustain life. My son will not want either one of those options.
I am now ninety years of age. I have seem my dear ones die since I was eight when my lovely mother died of heart disease. After that it was my beloved maternal grandmother “Marmie” who passed away and on up through my younger years the loss mounted. I have buried my first husband in 1990 and one son in 1996. In 2015 I buried my second beloved husband and learned of the seizure my son had, after which the doctors were stumped as to his condition till a few months ago when a new doctor went over every possibility for my son’s illness. Then two months ago, the biopsies were performed.
The house here is empty but for the comfort it gives me being the home where my husband was born and where he passed so peacefully, as was his dear way through life. My other children are all grown and aging and have grand children now. I thought my youngest son would have a long and happy life. I do not care to go out into society to join others anymore. I have stenosis of the spine and fall if not careful so I depend on my computer and TV along with calls from dear ones.
I wonder what to expect as regards my boy’s life and future expectations. Thank you for sharing and taking time to read this message. Bless you.
Hi Jack (@kecaj) ,
I understand what you must be going through. I was diagnosed with Rheumatoid Vasculitis, which turned out to be an even more rare form called Livedoid Vasculopathy. I have a great deal of contacts within the community, one of which I recommend speaking to time and time again.
I would connect with “Jim Bornac” – Vasculitis Advocate
His knowledge on Vasculitis never ceases to amaze me. I did a walk for Vasculitis a few years back with my son with Vasculitis Canada org, met some amazing people there. I sent him a message just now inviting him to join this discussion.
I hope you get the answers you’re looking for!
Good luck my friend.
Can Vasculitis and Wegener’s disease have similar symptoms? Wegener’s symptoms are lethal but not Vasculitis. Am I correct?
@hopeful33250 Good evening,
I do not know about foods for these diseases. My son started having seizures two years ago. They kept on recurring. No doctor he then had could find any cause or his source of illness. Two months ago a new and competent doctor had three biopsies done on my son’s left shoulder by his neck. I do not know what the biopsies showed but my boy had prepared his funeral, seen to his wife and two sons future and started giving his prize possessions to family members. He is stoic and remains sounding the same as always. He does not want publicity of an sort about his illness. I just do not know what to expect. I am still grieving the loss of my husband on November 9th 2015. my son was only forty eight when he had the first seizure. He turned fifty on April 17th this year. Why would he take such final steps even before the biopsies? I have so many questions and I am looking for a glimmer of information from someone who has suffered such symptoms. Thank you for sharing and for reading my message.
As a fact and unfortunate situation, “if seizures continue to occur (often
called status epileptus)–it’s time to seek a second opinion or another
doctor who specializes in this field. An epileptologist or even well known
and respected neurologist. That way you can validate the prognosis or
situation more accurately.
I would like to answer your question i have leukocytoclasttic vasculitis and horrible red swollen leaky patches started on lower answer as tiny red bumps. Then Bam up my legs, arms,buttocks and under breast. I mark myself where ots clear and not many of them tho but just to see if its still spreading. Now if anyone has had this and was goven presidone and it worked please tell me and help this horrified 49 yr old lady to have a little bright side to this rash of ugly.
I was diagnosed with MOA, P-anca two years ago.
I have been on rite in for the whole two years. I have only had tiredness as a symptom.
The above messages are really scary to me. I had developed CKD 6 years ago. That was treated and was in remission then it didn’t work anymore which is how I ended with an additional diagnosis. I have been given many possible diagnoses over these 6 yrs. lupus. Lupus-like , MPs, wegeners , plain ANCA not given a name and most recently I have ANCA – like .
I am blessed with excellent care at a teaching hospital. Drs have group meetings where they share certain cases. I have been one since I am unusual and “very interesting”. Not what you want to hear from your Dr.
I get a moderate amount of exercise , rarely drink alcohol, and I eat healthy fresh foods – mostly vegetarian.
After my second shot of covid vaccine , and after recovering from 2 days of illness from it , I developed a bonus. I stopped being tired. No naps needed any more. Could be a coincidence. Either way I am pleased.
After reading the above I feel doomed. I am under the impression ANCA is treatable. How long you can stay on rituxin is an unanswered question.
Has anyone managed to live in a healthy fashion after this diagnosis.?
MPO, NOT MAO AS IN FIRST LINE ABOVE.
Hi @siosal, I can imagine that the diagnosis of MPO ANCA vasculitis is scary. I'm tagging other members who live with ANCA vasculitis, are treated with rituxan and/or have kidney disease like @allie7764 @becsbuddy @molly48823 @3les54 @zenk @gingerw
You can read more from some of them in this discussion:
– Autoimmune mystery https://connect.mayoclinic.org/comment/282114/
Siosal, do you tolerate rituxan well?
Thank you for asking me to comment, @colleenyoung!
@siosal It sounds like a scary situation to be in, but knowledge will give you power, and understanding! Here is an article you may find interesting https://ancavasculitisnews.com/anca-vasculitis-symptoms/ I have kidney disease, do not have vasculitis.
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