Cpnhelp.org

Hi Kay, welcome to this amazing site.  You will get plenty of help here from the members. Neurology will take you in the diretion of palliative care pharmaology.  If you suffer from CPn and that is the cause of your MS, then this is the treatment of choice. There are sufferers on this site who have CPn and Lyme, and there is similarity in the treatments.  I had a very similar onset to yourself, but due to delays in waiting to be seen in neurology, my GP was willing to start me on this treatment in June 2014.  I firstly took NAC to see whether I got an affirmitive response, which I did, and then the antibiotics of the CAP (with all the supplements).  Now in January 2015 I have made such massive progress that some days I forget I have this disease.  I know I am winning and I will soon be 100% cured.  It is best to get treated early on in your infection before too much damage is done.All the best in your journey Kay.Irene

Hi Kay.You must be feeling frightened about now. Stress is the worse thing for MS and organizing a wedding is stressful. Try to find a MS therapy centre to visit as they are brilliant at answering all your questions and you get the camaraderie of fellow members.I recommend hyper baric oxygen treatment as I haven't had a relapse since starting 9 years ago. It's easy to start the cpn protocol all you need to buy is N.A.C. Take 4 times a day and see if you get flu like symptoms.MS isn't the end of your life but you have to accommodate it and co-exist with it.All the bestMoggie 

Hi Kay,  You assume all know what CIS is.  So I google it and here it is for anyonelike myself not so into the culture of MS to know the term.   I will read this information that I am posting and your intro now but abbreviations are difficult if not defined.Louise   http://www.nationalmssociety.org/Symptoms-Diagnosis/Clinically-Isolated…  

I wonder if you have a choice of medications from your Neuro?  And I wonder which are thought to be the most harmless?   I hope a few members that have researched all these choices will give their opinions.I doubt that you will want to put him off but some of these may be thought to be worse than others.   Starting buys you time to be compliant with the mainstream while checking out the possibilities that you have explored here.You have educated me about the term CIS.Louise

Kay, Like me, you decided your body didn't just turn on itself and start chewing on its own myelin without reason.  While panicked, I was certain I'd 'caught' a disease of some sort.I never joined an MS group, though they called me incessantly, telling me I'd need support as I declined.  I didn't need coping mechanisms; I needed eradication mechanisms.  And no MS group was going to be advocating for antibiotic therapy.Having found this information, I was on the abx protocol within a few weeks and it began helping me within another couple of weeks.  My neurologist refused to see me again when I refused to start any MS drugs.  I found a new neurologist.  You'll quickly learn to trust your instincts where doctors are concerned.  They're human and can't be expected to know everything or to easily change their thoughts on what they learned in medical school.If I were you, and I MEAN if I were in your shoes, I'd start vitamin D3 and N-Acetyl cysteine right now, wait til after the wedding/stress, then start antibiotics.  A couple of your countrymen will likely private message you soon, so watch for that.

Hi Kay – welcome!  I’m so glad you have found us.  I think the fact that you are so young, and only just diagnosed, will benefit you greatly.  I have a friend who was diagnosed around the same age as you – she started antibiotics straight away.  She has been symptom-free since finishing the antibiotics a number of years ago, and is now married with three children.There is lots of information here: http://www.davidwheldon.co.uk/ms-treatment.html.  I’m afraid most neurologists in the UK are unlikely to offer any support with this – more likely to suggest we’re crazy to contemplate taking the antibiotics.  You mention, though, that you have a good GP – it would be worth taking some of the information from Dr David’s website to your GP, to see if they can be persuaded them to help you.  A few lucky people in the UK here have been able to get their GPs to help.If I were you, I would gradually start on the supplements and N-Acetyl cysteine, and look towards starting abx after your wedding.I’m afraid my experience of MS Therapy Centres is very different from Moggie’s.  My local one is very conventional in its attitude and any suggestion that antibiotics might be able to help was taken as a refusal to ‘accept the illness’ and as a personal insult, so I had to stop going there for physiotherapy once I started abx. Keep reading, Kay – you’ll find lots of information and support here.

Hello Kay, back in 1982 I should have gone back to the neurologist to get the results of my test for why, amongst other things, my left leg was so numb and why I had had a couple of fits.  I chose not to because by that time I was in total remission, plus I knew what the diagnosis would be but thought that there was no treatment apart from steroids which had recently killed the father of one of my best friends.  I was in a kind of denial, thinking that if I ignored the thought of MS it would go away. If this treatment had been available then, when I was 24, I would have jumped at it and totally ignored anything the neurologist might have said.For over ten years I might have thought that the MS had gone away but then the relapses restarted, subtle at first but culminating in my trip to the central post office in 2001 and having to phone up David to come and collect me because I  could hardly walk out of the post office, let alone walk home, which was less than a mile away.  By this time I was completely loopy and inclined to talk complete rubbish in a drunken kind of voice.Do as both Mackintosh and Boadicea say, start on the supplements, especially vitamin D and aim to start antibiotics after your wedding.  There is little point in asking your neurologist to prescribe, a little more with asking your GP, in Irene's experience but if all fails, I can ssuggest a couple of ideas as to where to get the abx from.  The one reason to take your neurologist's treatment is to keep him happy, if you thought that wise and quite a few people do take interferons along with the treatment to keep their neuro happy.  Personally I never plan to see mine again but you and your new husband might think differently. I doubt if tecfidera will hinder your treatment .................Sarah

You might be interested to know that "Tecfidera" can be bought in railroad tank-cars:http://pipeline.corante.com/archives/2013/04/02/tecfideras_price.php

Kay, Norman's link doesn't work anymore but here is our thinking about tecfidera from a few months ago!: http://www.cpnhelp.org/latest_ms_wonder_drug

Hmm, the link still works for me.

Thanks all for the kind welcome and words of inspiration. On second thoughts, it might be best for me to chuck all my responses to your excellent points in one comment than to relentlessly clutter up the thread. (Apologies - am new to forum-ing).MacKintosh, it's good to hear that believing that there's a tangible underlying cause behind this condition rather than just a spontaneous full-body freak out doesn't make me some kind of pants-on-head lunatic; certainly that seems to be the prevailing belief of the conviction on a lot of other resources that I've perused. Whilst I'm not idealogically opposed to support groups (hey; if it works, why not?) I think I'm of a similar mind in that right now, that isn't the kind of support I need. I'm glad to hear that if you were in my shoes, you'd be doing D3. On getting the Clinically Isolated Syndrome initial diagnosis, I came across a study (http://www.ncbi.nlm.nih.gov/pubmed/23250818) in which relapses were delayed by the same. I started taking similar amounts, on the grounds that the levels appeared safe on review. This was towards the end of July; by the end of August, I had improved and have not gotten sick again. I have subsequently gained the diagnosis of RRMS based not on any new symptoms, but on the appearance of two new, non-enhancing lesions on an MRI conducted in mid-December. (So, I imagine, from the same bout of sickness that I have recovered from for now. I must admit to feeling slightly miffed; whilst I appreciate that the point of the McDonald criteria is to standardise the disease, it does feel somewhat like being stuck with a life-long diagnosis on a technicality). I'll be continuing with this, and the NAC is on it's way. *fingers crossed*Hi Boadicea! I'm genuinely glad I came across this site and community too. Your friend's story gives me a great degree of hope that if this is due to an underlying infection, I might not be stuck waiting for more relapses forever. Whilst I'll hasten to say that I don't, by any means, think that my neurologist is an unsympathetic individual by nature, he certainly comes across as lacking patience for the idea that any affliction of the CNS that doesn't show up on preliminary blood tests could be due to anything other than a tragic encumbrance one has to learn to live with. The reason I went to my GP for the Lyme testing, for example, is because my neurologist outright refused to refer for the tests (albeit with a highly sympathic, bless-your-little-cotton-socks look on his face), on the grounds that a strain of Lyme had already been tested for. I certainly agree with your advice on starting the abx after the whole getting-married shenannigans are out of the way; the side-effects certainly don't look pleasant. It's disappointing to read that there seem to be such rigid views of what "acceptable" theories of the disease are. Given that everything used to treat MS is essentially based on assumptions (even if they are very reasonable and well constructed assumptions), one would hope there'd be a little bit more of a culture of respectful disagreement over out-and-out ostracisation. I certainly will keep reading (although perhaps tomorrow, as being a bit of an early bird it's getting quite past my bedtime already).Hello Sarah! Unless I am mistaken, I believe you and your husband are the reason I arrived at this site. (The journey specifically being Youtube>http://www.davidwheldon.co.uk >http://www.avenues-of-sight.com). If so, thank you for making your personal, at times terrifying, but ultimately very positive story available to others seeking to address the cause, and not just the symptoms, of this insideous condition. (And if not, thank you for the excellent advice in any event). I aim to start the abx as soon as possible on returning from aforementioned gettng married malarkey. The main issue I forsee here would be finding a physician willing to prescribe; further updates certainly to follow. (Whilst I have every confidence in my GP as a physician, I also accept that long-term antibiotic treatment aren't exactly the flavour of the month in the era of the dreaded superbug). In the meantime, I do agree with the logic of keeping the neuro on-side this early in the match, although less so than with the logic of preventing further relapses if possible (definitely priority uno). I haven't seen anything to suggest that Tecfidera is inherently incompatible with tetracyclines etc that would warn me off it at present. My initial approach will certainly be to approach my GP with a well-reasoned argument (i.e. not mine; almost certainly Dr Wheldon's!) and the accompanying information, whilst starting with the non-prescription supplements as soon as they drop through the door. I agree that there's little point raising the matter with my neuro following the Lyme discussion.Norman and Sarah both: the link posted and the discussions resulting do give me food for thought!Is it a bird? Is it a plane? No - it's supaguy! Hello there  I am in fact in South Devon, which is probably why you couldn't see me waving. (In fact, as I live on the seafront of Teignmouth, I think I might have been mistakenly waving at France... I'll turn around next time). It's good to hear that there are varying levels of acceptance of CAP across the UK. Thank you for your kind words, your kind wishes, and most of all your kind relabelling of incredible obstinacy for a certain savviness ^_^ I'm fairly certain that my MS nurse will have all kind of blessings lined up for my stockings, but if there's one thing I'm very good at it's smiling, nodding, and resisting the temptation to rip my own face off with frustration at being patronised where I believe it to be kindly-meant. (That and ping pong). All: thank you so much for the warm welcome. It's my first day and I already feel that I've had more support and encouragement than I have in the last 7+ months of coming to terms with this odd situation. I am now going to bed feeling more positive and determined than in some time. x

Hello Kay, I do wish you the best with treatment. It generally works well, particularly in those with early disease, though even those with long-term progressive disease can benefit substantially. If you email me (my address is on my site) I’ll send you a couple of pdfs. What a lovely part of the country you come from. A few years ago I worked for a while in Derriford Hospital in Plymouth; a little later Sarah and I spent a pleasant holiday near Modbury. Interesting that you are a caver. I was, too. I belonged to the Cerberus in the Mendips and the Bolton in the north. A truly exhilarating past-time. My most hair-raising moment was being asked (told) to join a cave rescue as the medic at two o’clock one rainy winter morning. The fact that I was a pathologist didn’t stop me getting shanghaied; all the registered cave-rescue doctors were olivered at a conference. The rescue was at Simpson Pot near Ingleton. An RAF team was long overdue. Fortunately, they had abseiled into the Pit, which takes the stream but is a blind pot. Then they pulled the rope down after them. There were no injuries, just coldness, wetness and humiliation, so my services were not required. All the best with your prospects. David Wheldon  

Good evening Dr DW: thank you, and I will certainly email you regarding the PDFs.The South West is a lovely place to live (especially the South Hams area). I actually originate from the South East, but I think I outgrew it. I picked Exeter for my undergraduate studies and after meeting Tarqs (my soon-to-be husband) we got fairly cosy here. It's certainly great turf for caving, and I have many fond memories of adventures under the Mendips (and a great deal from the Hunters Lodge). I'm glad the biggest tragedy of the Simpson Pot misadventure was a VERY late night/early morning and some bruised egos; it's scary how quick hypothermia can set in.Annelet - lovely to make your aquaintance too. I hope both you and luckypenny are weathering the storm ok! It looks a bit intense.