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Camptocormia (bent spine syndrome or BSS): Looking for others

Posted by WiserRanter @wiserranter, Jan 29, 2018

I have been diagnosed with Camptocormia ( bent back syndrome ) recently and having a hard time doing what I used to do caring around a rollator and a cane. Finding information and people besides medical terms has been difficult if not impossible. Only found two people and neither one will talk about it. I have a mild case of CP but that has never really been an issue until now and it gets in the way since being diagnosed with Camptocormia. I also have venous statious in my legs and have to be careful not to even brush them up against anything. Add to that being diabetic also with a weight problem because of inactivity. I am looking for solutions to the Camptocormia as meds have not worked and trying the botox injections again coming up in a few weeks with a new Doctor. Also looking or starting to look for some kind of brace that might hold me up if the botox doesn't work or does not work fully. Found a brace support system but they have not found a producer for the manufacture of them yet so hanging in there for that to happen. Suggestions or comments welcome..........

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mishk | @mishk | Aug 27 5:04am
In reply to @johnbishop "Hello @porthole, Welcome to Mayo Clinic Connect. Thank you for sharing this information. I found the..." + (show)
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Hello @porthole, Welcome to Mayo Clinic Connect. Thank you for sharing this information. I found the link and thought I would post it for you. I think I also have this condition and was planning to discuss it with my primary care doctor at Mayo this Spring when my annual physical comes up.

Bent spine syndrome as an initial manifestation of late-onset multiple acyl-CoA dehydrogenase deficiency: a case report and literature review -- https://bmcneurol.biomedcentral.com/articles/10.1186/s12883-015-0380-7

I also found another article on the topic at the National Organization for Rare Disorders.
Riboflavin Transporter Deficiency -- https://rarediseases.org/rare-diseases/riboflavin-transporter-deficiency/

Can you get a referral from your regular doctor to a specialist?

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Thank you John for posting that article, I am a woman who started getting symptoms about 13 years ago in my early 30s, while my back wasn't the worst symptom of what I now know to be a Mitochondrial Myopathy and M.A.D.D., where when I was extremely ill manifested by my having to hold my head up, so it was a very interesting article as my diagnosis are both rare diseases. My M.A.D.D. is affecting my short, medium and long chain fatty acids (it's normally just the one so to have all three must mean I am very special - my slightly sarcastic way of dealing with this, I am in Ireland, so rare is even rarer with a population that doesn't hit 5 million), so thank you for that insightful article.

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LongLumbarFusion | @jbesr1230 | Aug 27 3:18pm
In reply to @comeback "Hi, Long, Thanks for telling of your experience. Maybe the recumbent bike could help me, too...." + (show)
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Hi, Long,

Thanks for telling of your experience. Maybe the recumbent bike could help me, too. The next time I see my PT I'll ask him about it.

Which country are you in? I'm also on the left coast (of the USA), where it can be soggy. But right now it's hot and bone-dry.

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USA. Pacific Northwest. You're correct for 'right now'. We have over 50 years of experience, and overall, between October and April, it can be very soggy, not so much in the quantity of water falling on the head, but rather in the prolonged drizzle.

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comeback | @comeback | Aug 27 3:58pm
In reply to @jbesr1230 "USA. Pacific Northwest. You're correct for 'right now'. We have over 50 years of experience, and..." + (show)
Profile picture for LongLumbarFusion @jbesr1230

USA. Pacific Northwest. You're correct for 'right now'. We have over 50 years of experience, and overall, between October and April, it can be very soggy, not so much in the quantity of water falling on the head, but rather in the prolonged drizzle.

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Yup, I'm in the PNW, too.
For all I know, we might be neighbors. 🙂

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looplu79 | @looplu79 | Aug 28 6:41am
In reply to @johnbishop "Hi Bob @rjmcb, Thank you for sharing this post. Your description of your diagnosis of Camptocormia..." + (show)
Profile picture for John, Volunteer Mentor @johnbishop

Hi Bob @rjmcb, Thank you for sharing this post. Your description of your diagnosis of Camptocormia almost perfectly describes how I've been walking for the past 2 or 3 years. I'm in my mid 70s now but my wife has told me that I walk like an old man since I was in my 50s. Thanks to your post and a private message from my friend @artscaping I now have some information I can use at my next doctors appointment which is scheduled in the Spring but I may move up if possible. Thanks again...John

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Thank you for your information
I have had Bent back with fatigue when walking for a few years
Any exertion like bed making makes me breathless and fatigued
I am managing and certainly do not have as severe symptoms like some have described
Reading these letters I see what is in store in future for me
Rheumatologist pointed to arthritis and degeneration of spine My GP showed polite interest
I finally went to see a spinal
Specialist privately
He prescribed physio to strengthen muscles
However absolutely would not recommend a brace
The thinking being that use of a brace would weaken muscles
I noted another comment here suggesting using a stationary bike for 30 mins daily
However I can’t find the letter on the site now
I go to a physio next week Hoping I will get a full assessment
Best wishes to all

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