froggy 1965's blog

50 done,srill not beter

Submitted by froggy 1965 on Sat, 2016-08-13 14:57

So done 50 now using rampherin..not noticed much differemde but will continue for the moment.  So hoping ro be better= this has become a long and difficult journey . The abitics definateliy helped which motivates me to continue with this nitemare.  I'm sure my father has cpn, wihich he goet from his mothers I've got ms and just wish the medical connunity  would take a bit ot notice of this.  Anyway too tirrd to wright more - Beat tp all, love Suzanne


49 done changed to ramphin

Submitted by froggy 1965 on Thu, 2016-07-14 09:36

ok so started raferpin - not a whole lot of difference so far but seem to have regained apperite which has to be be good, still not walking,pain in feet as gefore sill living in hope.   I hope for more improvements,  especially walking and brains seem tolive in confision - not good anyway still convin yced that I will recover its a very slow process for me  anyway best wishes to all on this marathon, love Suzannne

48 nearly over - still living in hope1

Submitted by froggy 1965 on Wed, 2016-06-08 14:57

Nothing major to rport this time, however things in genaral have improved.  Still not walking but bladder control is still ok.  Cam now get up off the foor, am sure that this protocol is working - just v slow which I know now is connected to chamo I had bacl in 2003.  Have seen several posts recently connecting alheminers with cpn, am sure this connection exists,  My granmother suffered from it  now faher is loaing his imind and I have MS.  Anyway continue living in hope,  best regards to all. love Suzanne

starting 47 Mon, wish I could recover more!

Submitted by froggy 1965 on Sat, 2016-05-07 17:18

Ok, do not seying or thinking that this totally hasn't worked, but stil cant walk, and t of patience,  I'm going to go back to UK by Sept where it'll be a whole  lot harder to get anti b's but on with this I have to go, no other choice- as superguy encourages me Ihave had some improvements - bladder  can see out of both eyes again so its all been worth it so far, just wish I had started sooner after diagniosis, and not had the chemo in the meantime - hey ho I'll just have to concentrate on going back etc and at least weather is good in summer.not that I can get out to enjoy it,    How many people are there who this has taken longer for? If anyone knows I'd really apperciated hearing about it.

recovering from 45 and a bit of good news!

Submitted by froggy 1965 on Sun, 2016-03-13 16:39

Ok so some good news - and can control my bladder again which is great - no more nappies !  I can leave the flat now and drink coke light with vodka again.  The walking,balance still to return but this has given me some hope.  Of course I will post as soon as I have any more good news, love Sx




so 45 in process

Submitted by froggy 1965 on Mon, 2016-03-07 14:25

so on day 2 of pulse now, feeling v bad - can report a little progress, - bladder a bit better can drink coke again which is great - used to go staight through me.  carer got me some adult pampers, that has certainly encouraged me to get a grip!  Anyway still living in hope and getting some positive signs.  Keep on with the battle!  Love S

ok, so done 44 now still in progress!

Submitted by froggy 1965 on Wed, 2016-02-17 09:56

Hi seems like this is going to go on forever , however I will just have to keep on it for yet longer.  I saw neuro in UK and naturallu he could offer me nothing and told me that another visit to chemo would best case give me temporary relief . worst case kill me. He reckoned abx is ok and doesn't know if its working or not but as on as I am stable and there is no quicker altermative then I will continue.  Anyway hope u r all ok. love S