Recently diagnosed - hi there

Morning all

I have very recently (this Friday just gone, in fact) been diagnosed with RRMSi. This follows on from a diagnosis of CIS in August 2014, after an episode of extreme numbness from the waist down. I remain convinced that these and other symptoms I have had all stem from a bout of ill health (a severe cold, with 'flu-like symptoms, that I was unable to shake for about 2 monhts, until it culminated in labyrinthitis) in November 2013, as prior to this point I had always been very healthy, and rarely suffered more than a common cold.

I am 26. Whilst I accept that this is within the accepted age parameters for diagnosis, I don't accept that my CNSi just randomly decided to break down after being almost obstinately healthy for my whole life to date. I am due to marry my partner in less than 6 weeks. Maybe it's a fault of character, but I worry that I might be a little too stubborn to just sit down and shut up about the build up to my diagnosis, or to dismiss them as possibly causal, at this stage of my life.

The first alternative to spontaneous system combustion that I jumped to was Lyme disease, oweing to a love of hiking and my extra-curricular activities during my university studies. (I read Archaeology, and was a member of the university caving society. Both invariably involved tramping through long grass in both the UK and abroad, and as I'd been bitten any number of times within that three year period, it seemed like a fair shout). I tested negative for Lyme, and oweing to the sheer volume of strains that my (excellent) GP tested for, am fairly confident that I don't have it. However, oweing to the respiratory nature of the initial sickness, I have been wondering recently if perhaps I fall into the subset hypothesised by Drs Wheldon and Stratton.

However, I have no idea where to start. Right now, my priority is avoiding further relapses, as I am aware that I might not recover so well from a second or subsequent incidents. My neurologist will be starting me on Tecfidera this week, although I am uncertain whether taking something designed to modify the immunei system is going to do me many favours if there does turn out to be an underlying infection.

I've cast the line out this morning, as I had to get it off my chest before I head into the office for the day. I hope to hear from someone. Having (somewhat shamelessly) pigged out on the contents of this site and the forums within, you all seem like very well-educated and kind people.

Best wishes,

Kay

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 CPni and that is the cause of your MSi, 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 NACi to see whether I got an affirmitive response, which I did, and then the antibioticsi of the CAPi (with all the supplementsi).  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 MSi 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 cpni 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 best

Moggie

 

Hi Kay,  You assume all know what CIS is.  So I google it and here it is for anyone

like myself not so into the culture of MSi 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-...<  

  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
  • <

I wonder if you have a choice of medications from your Neuroi?  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

  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
  • <

Kay, Like me, you decided your body didn't just turn on itself and start chewing on its own myelini without reason.  While panicked, I was certain I'd 'caught' a disease of some sort.

I never joined an MSi 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 abxi 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.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

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 supplementsi and N-Acetyl cysteine, and look towards starting abxi 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 abxi

Keep reading, Kay – you’ll find lots of information and support here.

Neuroi symptoms & many health problems from 1989. NACi+all supps(04/11) CAPi(05/11)

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 MSi 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 supplementsi, especially vitamin Di 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 abxi 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

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

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<

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Hmm, the link still works for me.

Hi and good evening Kay!

Smile

I saw your post this afternoon when it was still fairly new.  At that time, I didn’t know where you were from; could have been Toronto or Timbuktu.  After logging on to see where you were, I gave a loud “Umm” when I saw that you were in Devon.  I popped my head out of the door and gave you a wave across the Bristol Chanel.  I didn’t see you waive back … so it’s either the heavy mist or you’re in South Devon.

                        Tongue Out

I noted comments from Moggie about MS therapy centres.  The overwhelming majority of people confuse MS therapy centres in the UK with the UK’s MS Society day centres.  They sound almost the same but they are as similar as chalk & cheese.  Moggie’s therapy centre is gonna be a bit different from all of those others too.  There are at least three people doing CAPi at the Swansea centre (including me).  The usual voices of acceptance of inevitable doom would soon be drowned out by us.  Moggie is one of those that can boast of clear and unequivocal improvement since starting CAP.

I got diagnosed way back in 2010.  I had enough sense and enough fight not to just lie down and take the kicking that they knew was coming my way but, nevertheless, it took me until May 2013 for me to find my way here.  You got diagnosed last Friday and by Monday morning you had signed up and were posting on here.  By any measure, that makes you sharper, quicker and an awful lot more intelligent than I am.  Gifted with that wit, you will soon discern for yourself that neurologist have very little to offer you (if anything).  You will realise that you have come to exactly the right place.

Anyway, congratulations on finding your way here.  Congratulations on being blessed with the will to fight.  Use that will to fight and that high level of intelligence; utilise this knowledgebase and you will be just fine.

I wish that I had started LDNi and CAP when I first had stark MS symptoms.

Some people find doing this regime harder than others.  I have found it relatively easy.  The decision about whether or not you should start CAP should be an easy one for you to make.  What words your assigned MS nurse will use to this dismiss this protocol, who knows?  I do know what future they have in mind for you though.

You mention Lyme.  I have had those same thoughts and same concerns too.  The tests for Lyme are extremely uncertain.  If you were to just assume that Lyme is infection by borreliosis, there are lots of various sub-species of that.  It is my understanding that there can be up to five different bacteria involved in Lyme as well.  The good thing is that the meds we use here are a good place to start for Lyme as well as for Chlamydia pneumonia.

Enough said for now.

Good luck, Kay (and don’t forget to wave across the channel).

Wink

G.

“Don't believe everything you read on the internet.”

―    Abraham Lincoln<

Hi Irene, and thank you. I have investigated NACi (what handy footnotes! This is a very well-designed site, on top of the marvellous inhabitants Smile) and have managed to snap it up on offer from my protein retailer of choice. (The aptly named "MyProtein". They have decent offers on some nutritional supplementsi every so often, in case someone here hasn't come across them before, although admittedly not so much for vitaminsi).

Hearing that others have made such strong progress using CAPi and the associated supports, especially someone with a similar onset pattern to myself, is truly reassuring. To be honest, hearing that others even accept that an underlying pathogen is a possibility behind the illness, is fantastic.

Thank you for the kind words Irene. I am thrilled to hear that you have progressed so well following this route, and hope I can emulate this success.

Best wishes,

Kay

Keep an open mind... just not so open that your brain falls out.

Diagnosed with RRMSi in Devon, UK on 09/01/2015. Updates pending.

Evening Moggie

You're not wrong; it's all been a bit much to adapt to, and relatively quickly. I've been quite lucky regarding the stress element of the marriage, given that I've skillfully (or, more appropriately, cheekily) delegated the majority of it to the other half.

I will certainly look into this. Thank you for the specifics on NACi; I wasn't quite sure how to use this effectively, as looking into the mechanism of action left me a little muddled...

Best wishes

Kay

Keep an open mind... just not so open that your brain falls out.

Diagnosed with RRMSi in Devon, UK on 09/01/2015. Updates pending.

Hi Louise

You're quite right and apologies; I have come into all this very recently and therefore made the assumption that most on the site would be more familiar with said terminology than I was. (This was a little foolish, as in retrospect, I've had to explain the term to enough people, including other doctors and occupational health professionals, that I could have been forgiven for thinking that the whole thing was a very well-organised hoax by my neurologist. On researching the matter, maybe not).

Regarding your following point: I'm certainly getting very strong signals that Tecfidera is the drug he's most keen to prescribe, and that that and Aubagio are the ones he would be prescribing prior to the injectables. (Fine by me, frankly. I can't even be in the same room as a needle without giving it a highly suspicious look. O_o). He certainly seems to have better confidence in the relapse prevention rates from clinical trials of Tecfidera over the rest of the class, and his comments were something along the lines of "For what it's worth, this is the one I'd want to be on if I had MS."

Best wishes

Kay

Keep an open mind... just not so open that your brain falls out.

Diagnosed with RRMSi in Devon, UK on 09/01/2015. Updates pending.

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 RRMSi 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 NACi 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 CNSi 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 abxi 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 abxi 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 supplementsi 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 Laughing 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 CAPi 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

Keep an open mind... just not so open that your brain falls out.

Diagnosed with RRMSi in Devon, UK on 09/01/2015. Updates pending.

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 Wheldoni<

 

 

D W - [Myalgia and hypertension">i (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazolei. No medication now. Morning BP typically 110/75]

Oh goodness, this is all making me very homesick........ I am in Ontario, Canada now, and it is minus 30 degrees outside today. But I grew up in Salcombe, S. Devon, one of earth's great treasures of a place.

Welcome to this site, Kay..... Nice to meet you.

Anne

Yep, Anne, me too in Ontario and cold as hell.

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.

Keep an open mind... just not so open that your brain falls out.

Diagnosed with RRMSi in Devon, UK on 09/01/2015. Updates pending.

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