This Is MS Multiple Sclerosis Knowledge & Support Community

At the request ot Arron,I am starting a new thread tracking my antibiotic progress (or lack of it!)

I'm 42,an actress with 2 boys aged 9+10 and i live in London with my theatre director husband.

I was dx in 1987 after a weak left arm made work a bit more difficult.and after an MRI scan, was told i had M.S. in my local Casualty.Smashing.
I was given bottle of steroids and sent on my way with a"Good Luck".

This cleared up rapidly,but my father was dx at around the same time! As i felt comletely normal,I kept my dx quiet to protect them.

The next 14 years were really very normal-I had a tingly hand every 18 months or a numb foot here and there which always resolved itself and never stopped me working in the West End.

However in late 2001,walking started very slowly to get a bit harder,but after a rest and a cup of coffee, I felt fine again.

Eventually,I saw a top neurologist who told me I had probably become SPMS and again offered steroids and not much else.I was told I was "in denial" when I dared ask if the steroids would make my face look fat and sent on my way.

My father was worsening rapidly( dementia,doubly incontinent,had to be fed through a tube) and he finally died in Jan 2003 from a heart attack and pneumonia.

I tried not to panic and carried on living to the very best of my ability,though walking a long way was getting pretty hard.

I gave up work and was lucky enough to be put on the informed consent trial of Aimspro which was quite good sometimes but not good enough for my liking.

I stumbled upon this incredible site and Dr David Wheldon's very sane ideas,and so got myself in the car to see him at Bedford to be put on the antibiotic regime.
My G.P. was very helpful with my private prescription from David,and I only had to pay for one of the three antbiotics ,Roxythromicine, which I take twice a day along with Doxycycline.
I have been on them 10 days now along with the usual supplements(I'm rattling) but my skin looks great!

My symptoms definitely started worsening after about 3 or 4 days but last Wednesday( 7 days in ), I suddenly felt fantastic-my dodgy right leg felt much stronger again ,and I was flooded with confidence.

Unfortunately ,the next day,I felt worse again,so I have no idea what that "good day" was about.

I'll keep you posted each week if you can bear it but I have a good "gut-feeling" about all of this.

Thanks for letting me ramble on a bit ,people like Anecdote (David's wife) are my inspiration behind all this and they will never know just how grateful and lucky I feel.

Keep well and happy all of you


Debbie xx

Thanks for posting this. I'm have an appointment next week to be assessed for antibiotic therapy- it's very helpful to read the experiences of others, positive, neutral, or negative.

As promised,here is an update of my second week on antibiotics.
Well things are definitely happening!

Firstly,the l'Hermitte's sign that I have had as long as I can remember has all but disappeared and tiny residual bits of tingling in the ends of my fingers has also disappeared.
Also,when I stand up,I hardly seem to have any usual muscle spasms in my legs.

I'm not having any stomach problems which is probably helped by the gut flora supplement I'm taking every day.

What I have noticed is maybe a really strong day followed by a not so good one,which David Wheldon seems to think is because improvements happen in a "step-wise manner due to re-location "and which is still happening to Sarah(Anecdote).
Still,the good days are wonderful already and it's very exciting to hoope that these are the first steps.

Christmas stresses aside,I hope this all continues.

Please feeel free to ask any questions that I can help with.

Have a really happy Christmas everyone

Debbie x

Debbie, thank you for your continued updates. Your contributions are VERY much appreciated by the community.

Hi Everyone.
More antibiotic feedback.

Well,I'm now well into month 2 of my regime and things seem to have settled into a pattern of " a burst of energy and self-confidence" followed by feeling "worse and slightly depressed".

This is quite strange and a little disquieting as there is no time scale to any of this,so I try not to let it phase me and just keep swallowing tablet after supplement after tablet!

One thing that has never changed, is that I feel the same in certain places i.e. strong at home and in a certain supermarket,and always wobbly in the car park at work where the distance has never changed and which is a place I'm totally comfortable with.

Still,the antibiotics have not affected me at all with any side-effects,so I must be grateful for that and try not to worry how I will feel the following morning when I go to bed as there is no logical pattern at all!

At least there are definite changes during the day,hour,week,minute-it is certainly never boring!!

I'll post again in a couple of weeks or when anything exciting happens.

Stay well
Debbie xx

Debbie,

Quite honestly, I think trying to do an update virtually every week is way too much, because you will feel up one minute and down the next, probably even more so when you start on metronidizole. As I said somewhere, I didn't post anything anywhere until more than six months, when I had my first follow up MRI. I'm not suggesting you leave it that long, that was just due to a sudden lack of self confidence and not knowing what was happening, but just go easy on yourself.

Also, you will find for months and months that you feel better in some places than others: I still do even now. Crowds tend to discomfit me enormously and make me just want to stand still util they have moved on. OK except when the crowd is a wall of people coming straight towards me when crossing the road just before Christmas. I couldn't just stop in the middle of the High Street, with the lights about to change!

Take care,

Sarah

Hi Sarah

Thank you so much for that post - I feel so much better and more grounded after your advice. There are only so many question and answer sessions one can have in one's head before going a little mad!

I will leave some time before posting again- I was just trying to follow Arron's request for early-stage information but it's not as easy as I thought.

I hope you are still feeling strong and that the cycle ride was fun?

Debbie x

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Hi Debbie,

Yes, I am still feeling strong. Cycling can be something of an experience at the moment, though, shall we say. I break all the rules about not cycling on the pavement, I'm afraid, (only wide pavements where not many people walk) and when pounding back up the hill here I feel decidedly shaky when I stop. That's the trouble about living at the highest point of one of the few hills in Bedford: its OK when you go out, but you have to be able to get back!

I'm sure Arron will appreciate the difficulty of writing that often. I found, still do, that in any case, improvements come in stepwise cycles. Several weeks can pass and you think that nothing much has changed, or something might even make you feel a little worse, then one day you will wake up and feel that overnight you have scrambled up to the next plateau. Beware the metronidizole in this respect, when the time comes: especially the second or third go. Mind you, some people just sail through it, or so they say.

take care,

Sarah
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As Sarah said, please update only whenever you feel comfortable!

Your updates ARE extremely useful to our community and we are all grateful for your sharing.