This Is MS Multiple Sclerosis Knowledge & Support Community

Anyone still following this thread?

My wife has been newly diagnosed with balo's and we would love to opportunity to connect with anyone else who is dealing with this disease.

Please check out the blog site I have put together for her:
http://ourlifeinjensbrain.wordpress.com

...

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 ".")

Thanks.

My mom was diagnosed with balos around the time this was posted.
I know this is a late response, but i hope you recieve it and we can talk further.
i've been taking care of my mom rather than being young, and i just want to give her hope, anyone avaliable?

Hey Morgan - I replied via your personal email. Hope we can talk.

My partner was diagnosed with Balos last month. Are any of those who posted in 2008/09 still checking in? Information is scarce and most is in medical terminology I don't understand. One comment I read in this forum is that, at the time, there were only 60 reported cases. I know it is rare, but that seems truly unbelievable, but would explain the lack of information.

If anyone still checks into this forum, please respond. I would love to "speak" with someone familiar with what we are going through.

Thanks so much.

MEJ:

My wife was diagnosed last year about this time. She is doing quite well, all things considered.

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 ".")

I have been struggling with balos for almost 1 year now and it seems like things keep getting worse. I've been blessed with a headache that has been constant for 4 months, I'm extremely dizzy every day of my life, and now they think I may be having seizures. I was wondering if anyone out there has any advice because my drs (all 5 of them) keep giving me the same "I don't know" answer. I realize its rare but somebody must know something.

Hi everyone,
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.

Thanks

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.

Welcome to ThisIsMS, outlaw. There are many of us out here reading your post; you have found a new group of friends who want to help you any way we can. My heart goes out to you – what a heavy burden you have carried since October! I am not knowledgeable about Balo's, but I encourage you to follow up on chansen1106, who contributed the following:

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:
http://ourlifeinjensbrain.wordpress.com

...

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 ".")

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!

You stated that your husband was diagnosed on the basis of MRI scans and a biopsy (and his symptoms). I hope some or all of the following blood tests were done too. Compare his initial neuro exam with the following suggestions from the University of Chicago: http://peripheralneuropathycenter.uchic ... #bloodtest


Currently, I believe that gluten sensitivity and resulting excess insulin (hyperinsulinemia) play major roles in MS. Steroids raise blood sugar levels and, in turn, insulin levels; therefore, I believe steroids make my situation worse. Is it possible that your husband's pancreas produces too much insulin? Would his doctor order a "fasting blood insulin test?" Or order an ultrasound to check for an insulinoma (tumor)? Excess insulin may have caused insulin resistance in your husband; if so, this might account for his muscle weakness (transferring) and weight loss (His cells will not allow insulin to enter and burn or store glucose.). If this is the root problem, I'm surprised that plasmapheresis would not filter out the excess insulin; plasmapheresis temporarily improves MS and myasthenia gravis (MG). Diet/nutrition is considered a treatment for MS by many. Perhaps a ketogenic diet would help; it has been used successfully for children with epilepsy.

In part two of the 7-part presentation on Celiac by Gary Kaplan, D.O., the atypical or extraintestinal form with its neurological manifestations is described:

I have no medical background. These are my unique suspicions or opinions about MS, not accepted by any "expert" ...to my knowledge. I think chansen1106 (Chris B. Hansen) is probably the best person to answer your questions; please try to contact him. I know there are many people here, like me, who want to throw our arms around you and give you strength. Please keep in touch with us; we are good listeners, even if you just need to talk to someone. We care. You are not alone. You are in our thoughts and prayers.

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!!

Oh and today he was strapped into a standing machine for PT and passed out. We went to the hospital at his Neurologists recommendation and they literally didn't even ask about his current diagnosis! I couldn't believe it. I am calling the Neuro tomorrow. Hopefully he will be more helpful.

I appreciate the support!!

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!!

I don't know if anyone in your family has faced a major health crisis before. Since you are now the advocate/manager for your husband's case, please let me offer some ideas: My sister-in-law kept a detailed notebook/diary on my father-in-law (her dad) when he was in the hospital. She had doctors' names, nurses, drug names and doses, etc. at her fingertips. At the very least, I urge you to start a file with your own copies of every blood test result, MRI report – some people even request copies of the CD, every test done.

I realize that not everyone is interested in supplements; please don't be offended when I suggest these: If your husband is insulin resistant, a ketogenic diet can supply the energy (ketones from fat) which his cells can burn instead of glucose. In fact, the brain prefers ketones. If your husband can swallow without difficulty, consider coconut oil capsules or frying eggs in pure coconut oil. Coconut oil is a medium-chain fat, which is readily processed by the body. A doctor in Florida, Dr. Mary Newport, has even reported an improvement in her husband's Alzheimer's since she started giving him coconut oil daily in his oatmeal!

Most of the people here at ThisIsMS are trying many supplements – this is probably the result of desperation. We are willing to try almost anything that has no great risk of harm, if we are careful.

I, too, hope the neuro will be more helpful tomorrow; I am an optimistic person by nature. I always wish the best for you.

Hello. It's Jennifer here. I am so sorry to read about what your family is going through. It's all so sudden and overwhelming and unfair! I wish I had something illuminating to tell you. I know how frustrating it is to want answers and treatment so life can return to normal. The best I can offer is to clarify what happened for me and tell you who I worked with.

I had only one lesion, near my basal ganglia, when I had my first scan in Nov 2010. They gave me oral steroids, then IV steroids, which helped a little. Early on, they speculated I had tumefactive MS. In Dec 2010, I met with Dr. Weinshenker at Mayo in Rochester, MN. He said my symptoms weren't bad enough for them to treat with anything different, and advised me to let him know if things got worse. From that point forward, my local neurologist at University Hospital in Aurora, CO (Dr. John Corboy), kept in contact with Weinshenker so the Mayo's research could include my scans.

At my worst in Jan 2011, I was hemiparetic on my left side. The day I went to the hospital, my husband had to carry me to the car because I couldn't walk. As bad as it got, I never had issues with cognition, vision, or bowel or bladder control. My issues were all related to mobility and function on my left side.

In the hospital, they did 3 days of plasmapheresis (was supposed to be 5 days but I had a bad experience on day 3 and begged off the last 2) then one blast of chemo and they sent me home. I had many months of gradual recovery, but by Nov 2011 I was recovered enough to be working full-time again. I continue to see small improvements. The lesion didn't change much over the last year. My next scan will be in Nov 2015.

As I understand it, they're still trying to define what Balo's is. Like MS, it seems to vary greatly. I used to think that, by definition, Balo's patients only had one lesion. I connected online with a woman in her 20’s in Boston who has Balo's and MS. She also works full-time now, I believe. I showed Dr. Corboy her scan and he was very interested to connect with her so he could have more data for research. If you are interested, you could reach out to him and to Dr. Weinshenker to see if they could consult with your husband's doctor.

Higher in this thread is my husband's email. If you'd like to talk in person, email him directly and we'll get in touch that way. One piece of advice Corboy gave my husband is not to spend too much time researching online. There's a lot of outdated research out there and outcomes have improved dramatically. My heart goes out to you all. -Jen

I agree with Lyndacarol to keep a journal. Also, do not assume the right tests have been done...you need to keep an eye on everything. Once in hospital, my husband was receiving a drip, which wasn't working...I mentioned this to the nurse, and she basically said it was working and assumed I was an idiot. I had to insist, and then she realized that I was right. No apology, of course.
My husband does not have your husband's diagnosis, but I understand your position, it is very worrying, and I hope you can find the help you need. If your doctors don't know, then you need to find better ones, and you need to ask people for help, because with 2 young kids, you can't deal with this alone.
Good Luck, good health,
Why

Wow. What a story.