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My 40-yr-old daughter who had mild occult spina bifida and…

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My 40-yr-old daughter who had...
My 40-yr-old daughter who had mild occult spina bifida and scoliosis and has Cottrel-Dubosset rods in her back plus some kind of arthritis (osteoarthritis? psoriatic arthritis? foreign body reaction to rods?) and who has some kind of yet-undiagnosed GI problem (Crohn's? She is HLA-B27-positive) for which she was on prednisone for several months and then weaned off it in December, was able to walk and drive up through last November, though since last July she often felt the need of a cane. Suddenly in December she woke up with severe musculoskeletal pain and unable to get out of bed. Luckily someone found her and called 911. She was like that for a few days in hospital, then sent to rehab but by end of week, she could walk well enough to go home. It happened again in the middle of the next week. This time they just sent her home after one day. Then in a few days, the home physical therapist found her again unable even to turn over in the bed and she was taken back to the ER. That was on Feb. 14. She was sent back to rehab but still can't walk normally (needs a wheelchair most of the time) and is now having trouble lifting her arms above her head. She still has pain in the legs, including pain to being touched on the thighs or calves. There is no arm pain but she says she feels weak and it takes all her effort to lift her arms. No one so far has a diagnosis and in the rehab, she is not seen by any doctors--only nurses and PT people.
We are worried about some kind of spinal cord compression. Since she has always had neurogenic bladder and constipation, we can't really tell if there are new symptoms in that regard. We couldn't get any appointments with doctors until the end of the month, but if there is spinal cord compression, maybe the damage would be permanent by then.
I couldn't get a rheumatology appointment until May, but I sometimes wonder if having the rods in her back would prevent the vertebrae from assuming the "Bamboo spine" configuration for ankylosing spondylitis. And she has fibromyalgia so she feels pain worse and often feels fatigued (but not necessarily weak). Can you think of any other explanations or differential diagnoses we should be thinking about?
Submitted: 6 years ago.Category: Neurology
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Answered in 3 hours by:
3/5/2012
Neurologist: Dr. Rick, MD, Board Certified MD replied 6 years ago
Dr. Rick, MD
Dr. Rick, MD, Board Certified MD
Category: Neurology
Satisfied Customers: 12,250
Experience: 20+ years as a doctor. Internal Medicine Internship in NYC
Verified
It sounds like your daughter has been receiving good care from very qualified physicians without any significant lasting improvement in her condition. At this point I think the best thing you can do would be to gather up copies of all her medical records and travel to a large University Teaching hospital. At an institution like that she could be evaluated and treated by a team of sub-specialists who are at the cutting edge of their respective fields. The best thing about these large teaching hospitals is that consultations are available with Professors and leaders in their field by just walking a few steps down the hall.
The Mayo Clinic in Rochester, Minnesota is an excellent example of just such a place as this. That being said there are many excellent teaching hospitals all across the country and I am sure that there is one near her.
If you could tell me what large city she lives near and how far it would be possible for her to travel in seeking treatment I would be happy to give you some names. Of course, you could also ask friends and associated or check the internet yourself. Let me know what you would like to do.
Does this make sense to you?
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Dr. Rick, MD
Dr. Rick, MD, Board Certified MD
Category: Neurology
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Experience: 20+ years as a doctor. Internal Medicine Internship in NYC
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Customer reply replied 6 years ago
Thanks for the courteous reply. I doubt "Dr. Rick" would have anything useful to contribute since he is an ophthalmologist and the problem involved leg and arm weakness and pain. Keep the money. I'm sure some people have not paid a fair share, and omewhere along the line, I probably disappointed someone who used my work through the NLM database (no way for me to know this), so it will all balance out. You try to provide a useful service and if it doesn't succeed, that's life.
Neurologist: Dr. Rick, MD, Board Certified MD replied 6 years ago
Thank you for those kind words....and the accept.
You are absolutely correct. When I reviewed your post I figured that my many years as a retina specialist wouldn't serve me well in helping you to get new insight into what you and your daughter have been going through for so many years. Yet, when I noticed that you had been waiting patiently for a reply for quite time I knew that, at least, I might be able to point you in a direction where knowledgeable experts could, perhaps, help.
I do hope that things improve for your daughter soon and her pain can be relieved. As a father of 5 myself, I can't imagine what the two of you have been going through.....
Take care and hang in there :-)
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Customer reply replied 6 years ago
Thanks for having at least tried. At the moment we are still awaiting a neurology appointment on the 29th. She has had yet another small remission followed by another relapse. Each phase only lasts a few days. I was telling my GP about it, and he wondered if CIDP were a possibility. I had been thinking about MS but the remissions and relapses usually take longer and I haven't seen a lot of cases where pain was the most prominent symptom. CIDP might make more sense, especially because there have been cases of it showing up in Crohn disease patients (if that is what her gut problem is--no real diagnosis after almost 8 years of colonoscopies, biopsies, etc.). Things are not looking good for her, in any case. Glad to hear your family is OK. Be thankful every day that that is true.
Neurologist: Dr. Rick, MD, Board Certified MD replied 6 years ago
My pleasure. And more people need to understand that but for the Grace of whatever you hold Dear, when learning about what some people are going through, it could very, very easily be you or yours....the world would be a better place if they did.
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