Need urgent help

[Param]

Hi

My dad has developed granulas in his brain , .

He was admitted to the hospital as he had herpes (cold sores) around his mouth. Doctors are suspecting TB or a side effect of rituximab but they are not sure.

Does anyone know whether brain can get effected in this disease . he is 68 yrs old and was diagnosed in July last year.

Doctors are running tests but your answers would be a great help.

Thanks

[Al]

Param, I will send you an email.

Al

[watersedge]

Param, I am sorry your dad is not feeling well, it is very worrying when you are waiting on answers from doctors and don't know what is going on. It is very painful and upsetting seeing your loved one sick, I hope they can get to the bottom of it and can start treating your dad.

[mama2005]

I am very sorry to hear about your father I hope they are able to get the correct treatment and get him better very soon. I have been told that the disease can be present anywhere in the body and that it is diffrent for each person. I will have you and your family in my thoughts. wishing you all well.

[annekat]

I am very sorry to hear about your father I hope they are able to get the correct treatment and get him better very soon. I have been told that the disease can be present anywhere in the body and that it is diffrent for each person. I will have you and your family in my thoughts. wishing you all well.

I echo the above sentiments. It is always hard to hear of a fellow WG patient having such difficulties. I'm sure we all wish we could do more to offer advice and encouragement. I hope he is in good medical hands and his doctors are able to consult with the best specialists. Your dad will be in my thoughts and prayers.

Anne

[Sangye]

Param, yes Wegs can affect the brain (and other parts of the central nervous system). It's quite rare, though I know of at least 2 people who have CNS involvement. It is much more difficult to treat. It will probably be necessary for his doctors to consult Wegs specialists outside the country who have experience treating CNS Wegs. If they don't mention doing so pretty quickly, it's important that you make the request. This is urgent, so if they're not receptive at first you must make it a demand.

[Param]

Hi,

Let me start by introducing myself. I am Reet, Param's daughter.I had used my Dad's name as user ID, hoping that one day he will use this forum to share his experiences,joy and pain.

Unfortunately, he left us on the 17th of Jan.He was to be 67 years next month.He was diagnosed in July last year and had made lot of recovery.

The doctors were very positive of his recovery this time around as well and saying it is just a viral infection and no symptoms of the disease but actually it was a massive flare up which effected his brain, lungs , kidney and liver.

However he was sure that he will not make it this time and somehow I feel he did not want to make it. But he decided it for himself.

He drew his last breath on 17th surrounded by our entire family and had a peaceful death.

I thank all of you for your support and wish you best of health.

Best regards,
Reet

[annekat]

Reet, thank you for introducing yourself and letting us know what happened with your dad. I'm very sorry to hear he didn't make it. He was only 8 years older than I. We are here on the forum to learn about WG and all its variations and complications, and to share in each other's stories, both happy and sad. I wish you and your family peace and health in the years to come.

Anne

[Thakator]

Reet,

So very sorry to hear about the loss of your father. Please let your family know that there are many of us out here, all around the globe, who may not have met him but who were of kindred spirits with him because of our common plight and that we do, therefore, take your loss in a personal way as well.

Thank you for updating us. Ron

[Al]

Thank you, Reet, for sharing this. It is difficult to hold a parent's hand on this final journey, and I realize this time has been very hard on you. We will grieve with you, but we also understand that a loving family is crucially important. Your father could have been one of us. We would all be proud to have you as a daughter--or friend. Your story, in other words, as resonance for all of us; please feel free to be a member of our forum.

Al