outlaw wrote:I see that the last post on here was about a year ago but I hope someone is still out there!
My husband suddenly became ill in October of this year. He was having balance problems, difficulty concentrating and blurred vision. When we took him to the doctor he had 10 lesions, the biggest being about 2 centimeters. Within a week of being in the hospital his symptoms increased to include left side hemiparesis, slurred speech, blurred vision and difficulties with concentration and memory. Gradually this came to include difficulties with urination. He started at 145 pounds and dropped down to 120, he was having problems with appetite. His first diagnosis was made with the help of MRI scans and a biopsy.
His diagnosis was Tumefactive MS. He was treated with steroids and plasmapharesis. Neither seemed to be helpful. He was in first a rehab unit then a transitional care unit for a month, every symptom got a little better but barely. About 6 weeks from his first doctor appointment we were finally able to bring him home. This was just before Thanksgiving. When I checked him out of the TCU I took him directly to his scheduled appointment with the Neurologist. Unfortunately a follow up MRI hadn't been done before this appointment. We scheduled an appointment for the next day. When I got him home he could barely help my sister and myself to transfer from the wheelchair to a regular chair. It was great having him home but still a miserable night. He was to the point of not being able to do anything but feed himself.
Though it was difficult, we were able to get to the clinic to have the MRI done. They called me back into the men's waiting room and said that the radiologist was waiting for a call back from the Neurologist. We did not get a call back. We were sent directly to the University hospitals ER so we could see the Neurology team that night. They admitted him into the hospital again. He was able to be home for all of 20 hours.
His MRI showed that every lesion but one had increased in size. He also had two new lesions. His biggest lesion was now around 6 centimeters. He was no longer able to pass a Mental Status Exam however he was more able to have a conversation. He also was unable to be transferred unless there was two people assisting. This is when he was diagnosed with Balo's. He was treated with steroids, IVIG and finally they decided to start a chemotherapy.
We were encouraged to make sure that we had paperwork such as a Health Care Directive and Power of Attorney notarized quickly. His mom was encouraged to come back as she lives out of state. They say the prognosis is not good. If he has another attack he may not come back from it. If the treatment works the doctor says it is highly unlikely that he will ever work again (this is very important to my husband).
Its almost Christmas and we have two babies, ages 6 and 3. My husband is confused frequently and just wants to come home. He was our primary support person, carried all the insurance and got the 6 year old up in the morning to get to school.
With all of this being said, my biggest question is has anyone heard of a case this severe before? Do you have any ideas for me on anything really. I'm doing my best but I am kind of lost right now.
I hope you find encouragement in the story of his wife, Jen. Your husband's doctor may have said it is unlikely your husband will ever work again but in Jen's latest blog site posting, she was again working 40-hour weeks!My wife has been newly diagnosed with balo's and we would love the opportunity to connect with anyone else who is dealing with this disease.
Please check out the blog site I have put together for her:
If you want to get in contact with me, please email me at:
chrisbhansen at comcast dot net (replace the "at" with "@" and the "dot" with ".")
outlaw wrote:They did a ton of blood work. I'm pretty sure they did all of those tests. I think we were there almost two weeks before they would even say MS. Thanks for the diet information. All of this has been happening so fast I haven't had a chance to look into that specifically yet. The Balo's diagnosis was just made after Thanksgiving! (So stressful for all of us!)
I did look at Jen's page. I am a little nervous because it seems like her lesions were not as big as my husbands. It is exciting to see someone with good news though!!
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