[larsendondero]

A year and a half ago Gil and I were hiking, fishing, rafting the Santiam River on pontoons and enjoying our kids and grand kids. Then the headaches started and nothing made by any pharm company could touch them. Nobody in Boise was helping, hospitals kept sending him hope after a fee days, one did a blood patch then sent him home completely deaf in his right ear. Fast forward four months of this and Gil is dying.

He is holding nothing down and the local hosp has unhooked his iv because they Sayyid they were just basically treating his pain... I cried, begged them not to let him starve, he is six feet five inches and his weight was 160 lbs, still,...they didn't want to touch it.

I packed clothes and personal things, left our house and everything in it and brought him 8 hours away to Oregon health and sciences university....they saved his life. That was one year ago....he has suffered complete loss of hearing and sight on his right side, has only 40% hearing in the left side and what its left of his eyesight is fading fast. Out took this long to diagnose this most complicated and rare case...his neuro-ophthalmologist has taken his case to national conferences...

.we are blessed with wonderful Dr's but nobody can tell me....how do I help a strong man learn to be blind, deaf and forever unbalanced without a walker... A man who spent 17 years as a volunteer fireman while painting houses and single handedly raising five children...four of whom were not biologically his. He's been so wonderfully accepting until now. Reality is hitting him like a huge boulder and it hurts to see and hear his pain... I need to help him stay afloat...he's so wonderful

[Darlene]

larsendondero,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place. Gil has such a caring & loving wife. It is sad to hear what he has been going through.

Please keep us up to date on your situation. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

[ginnie]

Welcome to Neuro Talk. I am so sorry to hear about your husband. It is hard to watch and help those that have had a DX that effects your loved one so brutality. I will look up his condition, as I had not heard of it before. There are alot of very smart people on NT, who may know alot more than I do about rare conditions.
The moderator of the site, may be able to help direct you to a forum. Post to Chemar, or Jo*Mar, Waves, MrsD. They have alot of medical knowledge.

Just be there for him as you have been. There may be a caregivers support group where you can attend in your own community. This is what I did when my own family member became gravely ill.

I will keep you and your husband in my thoughts and prayers. ginnie

[llamafairy]

Hello and welcome to the forum. I also have been diagnosed with this rare condition and have my poor partner has taken care of me through this bout of it for four years now. I have been in remission with it for seven years at one point, so I want you to know that there is hope in this. I've also made contact with others who have this very rare condition and who take care of loved ones with it, so please know you are not alone.

Common initial treatment is high dose steroids (which can be very difficult to get off of), followed by immune suppressant medications. Currently, after much trial and error with other immune suppressants, I (and others) have been having good results with Cellcept, something you may wish to speak with your husband's neurologist about.

Please feel free to contact me if you have any questions or just want someone to talk to about this. I know how difficult and frustrating it can be to deal with such a rare condition and what a relief it is to find others out there who understand what it's like to deal with the same issues.

Be well and know you are not alone and there is hope with this.

Wendy

[jraytn]

I have also been DX with this disease, it is very rare, and I have been under the care of many doctors...it has been a long road to travel and a rough 2 years. Before I was Dx, I worked for the railroad as an electrician, was very active never been very sickly...until I started having these headaches that were 24 hours per day 7 days a week, my primary doctor treated it like high bp, nothing helped 2 weeks later I am back in her office and she changed the bp medication...still no relief went back again and she sent me for an MRI, before I could get back home she called my cell and told us to go back to the ER, it was serious and I needed to get there ASAP. They wanted and did a spinal tap to see if this was meningitis which it was inflamation of the brain 2 days later another MRI and spinal tap for the pressure of the spinal fluid....after many days in the hospital, was sent home with pain medications. Later in Dec. 2011 I passed out at home was transported back to the ER, stayed almost month in the hospital they did temple biopsy both sides noting found there, a few days later after every test you can imagine, they came in to tell me I needed a brain biopsy to tell them exactly what type of meningitis I had and that many of the test could take weeks to grow the fungus ect After days of no answere they sent a part of the tissues collected and all other test that had been done, to another hospital in New York for a DX and the doctors there had never seen anything like this before. I can tell you more later of the battle I have had with this disease. when I learn more about this site I can make contact via telephone in the lower 48 states to share my experiences and treatments with anyone who is open to share information. Wendy Thank you for the information to this site maybe we can all chat about our problems and experiences!!

Thanks
jraytn

[JoanieP]

I am new here...looking for some support after this major change in my life that abrubtly happened this Sept 24th. My husband took me to the ER because my speech was not sounding correct...it was words that made no sense...he though I was having a stroke, but after all the CT's, MRI's and Cardio tests, it was revealed that I had a brain tumor/lesion in my left temporal lobe. And then, the diagnosis was sounding vague and strange because none of the Dr's involved agreed. Our Primary Dr. suggested another opinion and referred us to the Mayo Clinic in Jacksonville, FL which is 5 hours from us here in Punta Gorda, FL.

The neurologist and neuro surgeon we have at the Mayo Clinic are superb and very personal in my case. Another MRI was conducted and then I was advised that the tumor needed to be resected sooner than later, and I had a craniotomy on Nov 20th. The tissues were sent to CDC for further observation and biopsy which then revealed 5 different biopsies with the diagnosis of idiopathic hypertrophic pachymeningitis. Now I will be undergoing further testing this next January as advised.

I was requested before the surger to be a part of a special Research program for brain tumors at the Mayo Clinic, which I am hoping will help many others who are facing these issues. Alongside which we will checking my DNA for possible genetic causes since my mother, brother, and a daughter have all died from "inexplicable" causes through the years. I am praying that this will bring some answers and preventive measures for the rest of my living family members as well.

Three years agao I was diagnosed with Celiac Disease and have been gluten free which has helped some of my problems that existed, but now I will be undergoing further Hematology testing and spinal testing as well. Have any of you been tested with IGG blood testing???

Since there are so few of us in this "idiopathic" source, I am hoping as most of you are that there will be more answers to our questions and concerns. Current issues I have are:

Focal Epileptic Seizures
Tinnitus and loss of hearing
Celiac Disease
Elevated AST enzymes
Loss of teeth due to gum disease (upper plate only at this time)
Fibromatosis in bottom of both feet
sinus bradycardia
low blood pressure
IGA was over 25 three years ago
IGG in two categories were "high"

Will be keeping you all in my prayers as we continue to sort for better treatments and being able to enjoy our lives!
JoanieP

[audpod13]

Very sorry to hear about your hubby. I hope that things continue to improve for him. I too have been diagnosed with IHCP and know the challenges of this disease. All the best to you and yours.

[audpod13]

Hello jraytn, Sorry to hear about your diagnosis. I too have IHCP and would love to communicate with others with this disease. Thanks.

[audpod13]

Hi JoanieP, sorry you are having a rough go of things right now. I too have IHCP and they now suspect mine is IGg4 related. They have not confirmed this with testing, but the IHCP was confirmed by brain biopsy. Any news you can share on your further testing? Would love to hear more about this disease and your treatment etc. Thanks. Audreyis so little out there, anything helps.

[JoanieP]

Originally Posted by audpod13

Hi JoanieP, sorry you are having a rough go of things right now. I too have IHCP and they now suspect mine is IGg4 related. They have not confirmed this with testing, but the IHCP was confirmed by brain biopsy. Any news you can share on your further testing? Would love to hear more about this disease and your treatment etc. Thanks. Audreyis so little out there, anything helps.

Hi, Audrey,

First I would like to say that I am so very sorry you are having to deal with this very rare diagnosis as well. The struggle you are facing is very similar to mine, because although our current biopsies have listed us with IHCP, that is not the "end all"....it is just the beginning.

My biopsies were listed with a total of 5 on my report. The first one was normal tissue because they had to remove some good brain tissue to get to the removal of the whole tumor. The second one states "blood clot" with unremarkable parenchyma. The third one states FibroProliferative process with associated mixed inflammation, no evidence of neoplasm. The fourth one states Fibroinflammatory process, no evidence of neoplasm process, and the fifth one is just the category of all the slides and frozen tissues in regard.

According to the "COMMENT", it states the dural biopsy shows a chronic inflammation without specific pathological characteristics and requires clinical correlation. IHCP is sometimes associated with immunoglobulin disorders...e.g. (IGG4, rheumatoid arthritis, granulomatosis with polyangiitis, and lymphoma.)

My Hematology testing on Jan 28th will be looking at the example listings noted. After that testing, I will be meeting again with my neuro surgeon for further information and testing plans if needed.

When my neuro surgeon told me about testing for IGG4, the first thought I had and shared with him was..."It was my IGA testing that helped diagnose me with Celiac Disease", and he stated , he knew that. So, that being said, I am thinking this is going to be attached to some type of other "immune system" or more. Celiac Disease is an immune disease and usually is attached to at least one or more other immune diseases.

I will be more that happy to stay in touch with you and share our findings as we go forward. Since I am a part of the Research Program at the Mayo Clinic on this process, I am hoping to help as many people as I can who are dealing with this rare disease.

Hope is out there...our Faith will carry us through.. Joanie