Balo's Concentric Sclerosis

[Bec]

Hello everyone-
I realise that this is an MS website but I was hoping that someone might still be able to give me some help or advice.
Last week I was diagnosed with Balo's Concentric Sclerosis. As it's pretty rare (my Neurologist has never seen it before) I am trying to do as much research as possible. I am also trying to find other people that have also been diagnosed with Balo's- if anyone is reading this I would love to hear from you.
Any advice/ information will be very greatly appreciated. Many thanks in advance, and hope that you all have a very happy christmas, Bec X

[dignan]

Hi Bec, Daisy's husband has Balo's and she has a very informative thread here:

http://www.thisisms.com/ftopict-4061.html

[kimrene]

Wow, I just read daisy's long post but found it very interesting.

I especially liked her theory about how trauma to the body can release toxins and heavy metals back into the bloodstream, that had been stored in the bones previously.

Kimrene

[gibbledygook]

Here's a piece on balo's from PubMed which is invaluable for research materials.

1: Brain. 2008 Jul;131(Pt 7):1722-35. Epub 2008 May 30. Links
Mitochondrial defects in acute multiple sclerosis lesions.Mahad D, Ziabreva I, Lassmann H, Turnbull D.
The Mitochondrial Research Group, University of Newcastle upon Tyne, UK.

Multiple sclerosis is a chronic inflammatory disease, which leads to focal plaques of demyelination and tissue injury in the CNS. The structural and immunopathological patterns of demyelination suggest that different immune mechanisms may be involved in tissue damage. In a subtype of lesions, which are mainly found in patients with acute fulminant multiple sclerosis with Balo's type concentric sclerosis and in a subset of early relapsing remitting multiple sclerosis, the initial myelin changes closely resemble those seen in white matter stroke (WMS), suggesting a hypoxia-like tissue injury. Since mitochondrial injury may be involved in the pathogenesis of such lesions, we analysed a number of mitochondrial respiratory chain proteins in active lesions from acute multiple sclerosis and from WMS using immunohistochemistry. Functionally important defects of mitochondrial respiratory chain complex IV [cytochrome c oxidase (COX)] including its catalytic component (COX-I) are present in Pattern III but not in Pattern II multiple sclerosis lesions. The lack of immunohistochemically detected COX-I is apparent in oligodendrocytes, hypertrophied astrocytes and axons, but not in microglia. The profile of immunohistochemically detected mitochondrial respiratory chain complex subunits differs between multiple sclerosis and WMS. The findings suggest that hypoxia-like tissue injury in Pattern III multiple sclerosis lesions may be due to mitochondrial impairment.

PMID: 18515320 [PubMed - indexed for MEDLINE]

link

As it seems to be just a variant of MS I would suggest taking herbs that help to prevent blood stasis and rupture of the blood vessel walls such as ginkgo biloba or salvia miltiorrhiza.

[Bec]

Guys- thank you so very much for your replies. I have been so touched by all the support that I've rceived from all kinds of sources in the week since I was diagnosed. At present my symptoms are not too bad so Im hopeful that I will not have the most aggresive form of Balo's, but I'm having a second MRI scan at the start of January so will have a better idea after that.

I have read Daisy's posts. Wow! What dedication. I am a bit in awe.

Thanks ever so much for the link too- I'm not going to pretend that it means much to me so I've been enlisting the help of my very clever brother in law who is a scientist to translate things that I find!

And as for the herbs that you mention- I shall certainly give these a go too. I am thinking about cutting down on my intake of dairy foods as at present I am a bit of a cheese addict and I've read in a few places that a build up calcium can be detrimental.

Hope you are all Ok, and thanks again x

[Lyon]

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[Shayk]

Bec

It's not my impression that all people diagnosed with Balo's necessarily have an aggressive course.

Here's an article Baló's Concentric Sclerosis: Clinical and Radiologic Features of Five Cases

We herein present five cases diagnosed as BCS based on their MR imaging findings, which were similar to those of other previously reported cases with antemortem diagnosis (9, 12, 13, 16).

All our patients had a benign course without further relapses within a mean follow-up period of 30 months (range, 6–47 months) (Table). Such an outcome has also been reported in recent cases, with some showing spontaneous remission, as seen in our first case (16, 22).

Most of the earlier cases with a progressive and fatal course were based on autopsy findings. Therefore, it is very likely that many cases with a benign course were either missed or misdiagnosed before the introduction of MR imaging into clinical practice.

There was also a more recent report from China: Balo's disease showing benign clinical course and co-existence with multiple sclerosis-like lesions in Chinese

This report presents seven Hans Chinese subjects diagnosed as BCS on the basis of the pathognomonic MR (magnetic resonance) findings.

Upon diagnosis, all the cases displayed good responses to corticosteroids and showed an overall benign prognosis during a follow-up period of 4-13.5 years, although three relapsed later.

MR findings suggest that the characteristic concentric lesions of BCS frequently (5/7) coexist with multiple sclerosis-like lesions.

During follow-up, the Baló-like lesions may either dissolve over time or transform into an MS-like lesion. Moreover, the Baló and MS-like lesions occurred one after another at the onset and relapse phases of the same patient in two cases.

I think it's a positive sign your symptoms aren't too bad yet.

Best to you

Sharon

[Bec]

Thanks so much Sharon- that's really interesting stuff. Am feeling very positive about it all, and reading things like that help too. I also think I may have found someone else in the UK that has Balo's, which although is a shame it's also good for me (how selfish!). I've sent him a message so will see if he gets back to me.

The worst thing initially about my diagnosis was that I felt a bit isolated (although I told my fiance, my family and my friends who were all amazing) because it's pretty rare. But I have to say I've been made to feel really welcome by the MS community and the support means a lot to me.

Just in case I don't get the chance to post again before Christmas- all to all reading this,

Love Bec x

[Bec]

Sorry Bob- didn't read your message before my last post. It is very interesting isn't it? I am intrigued as to why might have developed Balo's. As far as I know my Mother's family are Welsh through and through and my Dad's father's family are English (from mighty Sunderland).

My Dad's mum's family was once from France (if you go way back) but had been living in Guyana for generations. My Gran met my Grandad when he was working over there and then when they got married they moved back to the UK. It's not exactly China or the Phillipines but it's the only non-European connection we have that I know about... but I am doing some more digging...I'll keep you posted!

Bec

[Lyon]

.

[gibbledygook]

In the same vein, Northern Europeans living many generations in Guyana

but perhaps not the same vein...!

[Lyon]

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[Bec]

That's very interesting! I shall certainly bear it in mind. The chap I thought I had found in the UK with Balo's turned out to have been misdiagnosed so I still haven't made contact with anyone else who has it yet- but if I do manage to then I'll ask them about their background too.

It certainly has struck me as being so random that I should have this when it more often affects those in the Asia-Pacific region, as I look about as English as you could get probably!

Something else that strikes me as interesting- what literature there is on Balo's suggests that it is more common in men than women, and from the case studies I've found so far it strikes me that women contracting the disease seem to be more likley to make a full recovery, so I'm feeling hopeful.

Anyway, might not get a chance to post again before Christmas now- so have a good one, and thanks for taking an interest.

Bec x

[dimplez]

I was diagnosed with Balo's 2 years ago and since then have had a baby who is now 8 months old. My Neuro has actually had a case previous too mine so I feel so fortunate that he has at least seen what it looks like before.
I have never even talk to anyone who has heard of Balo's let alone talk to someone who has it... I have to say I'm a little thrilled right now that I am not alone.
Please feel free to talk to me anytime.

[Bec]

I have to say that I read this posting on Saturday and I cried! It was just so lovely to hear from you- and all of a sudden I don't feel so alone any more. I then couldn't remember my password to allow me to post on the site which is the reason for the delay! Anyway- have sent you a message with more detail x