Well its party time, nearly....

I was going to send Cpnhelp a bunch of flowers but in the attempt managed to punch out every subsequent blog entry so here is the place to send your best wishes and wise sayings.

HAPPY BIRTHDAY CPNHELP.   Thanks a bunch for your very exsitence, your continued support and the community you created.

Russ Farris the author of the Potbelly Syndrome has sent me an e-mail about this internet Citizen's research group he has just established and asked me to pass the message on to whoever might be able to contribute.   This is aimed mainly at older people's experience but researchers with useful knowledge regarding this subject will be most welcome.

Here is his message:

Hi all,

Jim has officially declared Cpnhelp's birthday to be on the 24th August at 10 am EST.   So that translates to: (correct me if I'm wrong)

PST 7am

CST 9am

EST 10am

AST 11am

BST 4pm

I would be good to see as many of you as possible around that time for an online celebration.

We could use this blog to do the posting of whatever you think is suitable: pictures, stories, jokes etc... 

A few observations regarding Ella's latest pulse seem appropriate after the scary events of the past month... Just to be on the safe side she decided to return home to do the pulse taking into consideration the events that followed the previous one.

I observed that:

-the effects of the tinidazole kicked in much quicker this time than has been her experience in the past when a gradual increase of her fatigue, lack of balance and co-ordination was the expected course a pulse took.

-on day one, she suffered her usual loss of appetite, but because she was at home and her 'mummy' prepared and cut up her food, she ate fairly well.

-by day two she was staggering about, wall walking and not going upstairs except for bed

Today we are feeling a lot better than we did yesterday.   Let me explain...

When we got home yesterday I gave Ella 50mg of methylpredisnolone (1/2 a tablet left over after a previous treatment) and by the evening she was walking better and able to lift her left leg, which she had not been able to do in the morning.   This gives me two pieces of information:

1. if 50mg makes a difference then the problem is not as big as it appears.   One hundred mg made no impact on her condition when she was given it on a previous occasion.

2.  This exacerbation appears to be the result of inflammationi rather than a new infection.

We have been to see my doctor and he has given her a short course of high dose steroids that should put an end to this episode. 

Ella is back home with me once again, unable to manage on her own for the time being.   A bit of a shock, we firmly believed this kind of thing was behind us; but it appears from ours and other's experience that even two years plus into the treatment something can be so stirred up that you end up with exacerbations which floor you.

There are still signs of improvement in some areas, such as Ella's sight problems which are much improved and mostly stable and her right arm which took a bashing a year ago has remained strong and unaffected by the recent exascerbation.  

This all comes a fortnight after a weekend of sun and a few days after a three day pulse. 

Author: Norman Doidge, MD

Title: The Brain that Changes Itself, Stories of Personal Triumph from the Frontiers of Brain Science

Published by: Viking Penguin, 2007

Reviewed by: Michele Findlay

Norman Doidge is a psychiatrist and psychoanalyst who became interested in Neuroplasticity and decided to investigate the subject with a view to helping his patients.

He uses case studies to illustrate the various ways in which the brain can either repair itself or compensate for damage by commandeering adjacent areas.

Hi Barbara,

Welcome to the site, I note in your profile that you talk about Azithromycin therapy. It is important to understand that one single antibiotic is not going to do the job. Please read the Getting Started module which is on the blue tab at the top of the page.

It is also useful to be able to communicate with other members via Private Message, but you need to go to your account to enable that. You will find the my account heading in the blue edged box on the left.

Michele

I'm needing some help with dealing with Ella's fatigue. It seems that in the past three months she has been suffering from increased fatigue. I think it is probably down to porphyriai and I should start the Charcoal once again, although that makes her constipated so not the best choice. But it would be great to hear what other people have to say about the fatigue. The anti histamine seems like it might be a good idea but what about the Chlorella - Daisy? I'll be looking at the Reactions and Remedies in a moment maybe I should take notice of my own medicine...

So much posting has been going on, (mostly from me editing the new pages) that Jim's gems and my comments blog have been relegated to pages 3 and 4. So here is a new blog for any useful bits of information that could be included in the pages. FAQs are the obvious place for useful information.

11am in the UK

I've just uploaded the pages of the new easy to digest Getting Started Book. It is a work in progress and will change as you make suggestions and corrections to it. ((I would like it to have a seperate TAB of its own but I don't know how to do that... Anyone?))

3.30pm in the UK

Some knowledgeable person has done it. Thanks Jim... So now all you have to do is point new people to the blue tab called Getting Started.

If you have any comments could you write them all here, it will make it easier for me to sort things out if all comments are in the same place. Thanks

Michele

A friend passed this on to me, and I see it as another opportunity to spread the word about MSi treatments, so if you feel moved to make a comment please read this article in the The Herald, a leading Scottish Newspaper. Scotland has the highest incidence of MS in the world, so often their reporting is more realistic and serious than Daily Mail offerings....

If you are going to make a comment about Cpnhelp.org don't use the entire URL as it is likely to be ignored, just leave out the www and it should be ok. My comment using just that seems to have stuck. You will have to register to make a comment but not difficult to do.

Michele

Mother of Ella an MSer

Welcome to Edith our newest member.

We usually send new members a welcome message that explains a few things about the site and gives other useful information.   To receive this message you need to enable the private message facility in your profile.

Michele 

First of all I’ve got to say that short of the post-operative pain period of a hysterectomy, this has got to be the worst few days of pain that I have experienced in my life.   But secondly I’ve come to realise that some aspects of this most unpleasant experience are very positive.