MY HUSBAND IS 35 YEARS IN A NURSING HOME. HE HAS UNDIAGNOSED MULTIPLE BRAIN LESIONS THAT WERE FOUND ON CT/MRI SCAN ON JANUARY 4TH OF THIS YEAR. I TOOK HIM TO THE EMERGENCY ROOM BECAUSE OF SHORT TERM MEMORY LOSS. HIS SODIUM LEVEL WAS EXTREMLY LOW. AFTER 2 BRAIN BIOPSY'S AND 3 SPINAL TAPS NO DIAGNOSIS WAS GIVEN. MY HUSBAND HAS HIS 2ND TRACH AND CAN'T MOVE HIS TRUNK AREA OR HIS LEGS. HE HAS NOT BEEN ABLE TO SPEAK SINCE JANUARY 30TH THIS YEAR. THE DOCTORS IN CHAPEL HILL NC TESTED HIM FOR EVERY INFECTIOUS DISEASE/BRAIN TUMOR/CANCER POSSIBLE. NO ANSWERS!!! THE 2ND BRAIN BIOPSY WAS VERY LIFE THREATENING. I MUST ADMIT- NO MORE BRAIN BIOPSIES EVEN IF IT MEANS NO ANSWERS. ANY HELPFUL INFO. WOULD BE APPRECIATED. IT'S VERY DIFFICULT NOT KNOWING WHY YOUR LOVED ONE IS SO....SICK.
SINCERELY SEARCHING WIFE
[url="http://www.medicon.cz/Medicon/Facts/NationalRankings/NEUR95.html"]http://www.medicon.cz/Medicon/Facts/NationalRankings/NEUR95.html[/url] This is a link to the best know neuros., clinics and hospitals. Also, the only other thing I can think of is to do all the research you can yourself in library books and the internet. This is how some people find out what the problem is when the doctors have no answers. I am sorry you and your husband have not found the cause.
Do you know where his lesions are located? Are they benign or cancerous?
I was diagnosed at age 23 with Neurofibromatosis type 2. It is diagnosed by either having tumors on the hearing nerves and in the spinal cord. They also show up on optic nerves and anywhere else. It is supposed to be an inherited disease, but I am the first to have it in my family.
There are so many weird things you can get out there--his could be anything--so try narrowing down the choices---location of tumors, symptoms, etc. If they cannot find what it is----guessing can't hurt neither right? I hope it all works out ok and you get a diagnosis for your husband.
Dear Concerned Wife, I know what you are going through. My husband had similiar symptoms a year ago May and all the tests including Brain Biopsy. He was diagnosed as having Acute Dissemanated Encephamylitis Disease. A form of encephalitis believed to be caused by vaccine or virus. Apparently it is the immune system that eventually attacks the brain. Has your husband seen a neurologist? Please let me know how you are doing. Halley
Yes, my husband has been seen by the Neurology department in Chapel Hill NC & Wilmington NC. Every department at Chapel Hill tried to give a diagnosis for my husbands condition but was unable to. The Neurosurgeon did 2 brain biopsies, in addition he had 4 spinal taps. Was in Medicine ICU for a month on life support & no one can determine what the lesions are on his brain effecting his central nervous system. He ended up having over a liter of fluid around his heart in June & no cardiologist could even tell me why it was there. They drained the fluid and biopsied the tissue from the sac of his heart. With no results. My husbands condition is improving slowly. He is becoming more responsive day-by-day and physical therapy is working with him again. I'm just thankful he knows who i am & loves me very....much. His lesions are web-like-spider vein almost, covering the right,left & top of his brain. His pituatary glands are damaged from the lesions, therefore causing many problems. Today for example he had a temperature of 104. However, he was smiling & giving me kisses. Sometimes life is bitter sweet that way. We just have to cherish every moment God gives us! God Bless you and your husband!!!
Hi, I'm so glad you came back. I've been checking every day. I wish I had some answers for you. Are they checking your husband's sodium levels regularly and giving IVs when needed. In 1999 I went to ER with sever heartburn and they took blood. I had low sodium & potassium (sp), so I had to stay and get IVs. If these levels are low, your heart does not work right and would cause the fluid to accumulate. I pray they can get some answers for you soon. Not knowing is the worst. How right you are that life is bitter sweet. I'm so happy Jim is still with me and loves me more than ever, even though he will probably never be the same. Yesterday we attended a wedding and the minister encouraged all married couples to renew their vows. In sickness and in health took on a more serious meaning than it had when we were married 33+ years ago. I have no regrets. We take every day as it comes and do what we can. I pray you will soon have some answers & God will watch over both of you and give you the strength to live and make the best of your lives together. Halley
I agree it's nice to find someone out there that can sympathize with what you are going through. We haven't been married (6years) as long as you & your husband but it's still very painful to watch the one you love suffer in so many ways. My husband is tube fed as well. There are times when they would flush him with sodium to adjust his sodium levels. But now he seems to be okay. Yesterday he started feeling worse again, his temperature went to 104. Tonight it is back down to 101. They started him on an antibodic that seems to help the temp. however his blood work came back fine, not showing any source of infection. He just has a lot of secretions for him trach right now. Respitory problems seem to go hand in hand with the brain lesions. His body temperature does change from time to time because of the lesions on his hypothalmus. This regulates your body temperature & your sleep patterns. Which are both an issue for Steve. Does your husband take seizure meds, Steve was recently changed from Dylantin to Keppra? Steve seems to be doing better on the Keppra. I'm only 33 years old & right now i feel way beyond.....my years. This is something i wrote the other night, so it really makes you feel good when someone really cares. Do we really care?
This is a good question I have to ask even myself. Our society today teaches us to be selfish people. We are what I call surface caring people. Itís common to ask someone how he or she is but we cross the line if we answer honestly with how we really feel. Most of the time a person doesnít really want you to cast all of your cares upon them. Iím writing because I truly know how it feels when your polished and shined on the surface by people today. Everyone says they care but do they really?
My husband is 36 years living in a nursing home due to undiagnosed multiple brain lesions. He is bedridden at very young age and is just now becoming more alert.
Itís really like watching a grown man go thru his childhood years again, rediscovering the simple pleasures in life. I feel like everyone that knows him has put him in bubble or sat him on a shelf, like a past memory that they can reflect upon from time to time.
The most painful process of watching my husband illness is that the people I thought really loved my husband have truly disappointed me. They can only deal with memories and not the quality of life my husband now has to endure from day to day. Yes! It is hard but itís worth every moment when I see soÖ.much life in my wonderful husband. It just breaks my heart that others are not comfortable with the person my husband has become. I hope if anyone has a friend or a loved one in a similar situation they take the time to really care and spend some time with the person and create new memories that can be cherished for always.
I must admit my greatest strength and comfort during this time is Jesus, yes he tells us in his word to cast all our cares and burdens upon him. This is truly my hope. I just pray that all mankind follow his example of unselfish love. The greatest gift!
MAKE A DIFFERENCE Ė CARE ABOUT SOMEONE TODAY
I didn't expect you would write back so soon. No, Jim is not on seizure meds. He is on meds for depression, fatigue, & sleeping. You are both so young. In an earlier message I said that I know how you feel, but being you still don't know after all this time, I don't know that I really do. I can only imagine. I was a basket case after a few weeks of not knowing and you have had to endure months. What you wrote is true. Others do tend to just go on with their life. I remember when this first happened to Jim. I was on the phone constantly. Everybody wanted to know how he was and how I was doing. Now they know he isn't going to die from this just yet, so their lives are back to normal. Our lives will never be the same, but we will do ok. I do hope you have some people you can talk to about what you are going through. If you don't, there may be a caregiver support group in your area that can help get you through this time. Reach out and ask for help. I know it is hard because we want to think we can do it all, but we can't. Even some of the people you think have deserted you now would love to help. They just don't know what to say or what you need. I will be watching the Healthboards and hope you will write when you want to. God Bless. Halley
Hi, my mother-in-law has been ill for about 2 years now. She was first diagnosed with deppression. Then she began to have blurred vision. an mri showed that she had tumors on her brain. with some steroieds they went away. she was ok for while but began to fall down. went back for another mri. it showed some more tumors. a biopsy had shown no type of cancer. so again it was treated with steroids. it helped a little but not much. she now is on just had her fourth biopsy and again there was no cancer. the doctors have no idea what it is. they just say it is inflamation. they have ruled out ms, and wegners. we went to see her yesterday and she could not even lift her head up or speak. now she has been almost asleep for 2 weeks and not eating. we are just trying to get a diagnosis of this disease. can anyone help.
she has been to north shore, long island jewish and new york prespytirian hospitals. I was wondering if this was the same types of symtoms you were describing. please email me @ [removed]
Last edited by moderator2; 11-21-2003 at 05:49 AM.
Reason: Do not post contact information. This board is for anonymous use only.