MediTest
Submitted by JaneK on Sun, 2018-02-25 15:48

Hello everyone,

before Christmas i felt good, really on the mend, although I knew i had a way to go before my MS came under control,  but, since the new year, i seem much worse, my sight is worse, my fatigue is bad , as is my hypotension - i’m horribly light- headed - and my mobility and balance are dreadful.

it’s 9 or ten months since i began the CAP and i’ve taken every dose, although i took my last pulse a week late.  my disability has never been quite so bad.  i‘m very aware of 2 steps forward and 1 back, and have experienced it,  but i seemed to take three steps forward and five back!  This has been 2018, so far, and my symptoms are changing, but only worsening, i’d like to believe this is remyelination or, simply, par for the course, but I’m struggling, so i’d like to know what others experienced.

jane

Jane, to start with, are you feeling worse than you ever have been, with your MS rather than your hypotension?  Were you not taking anything for your hypotension?  You might have reduced the dose too quickly.

As for my recovery, I might like to think that it was all plain sailing, but as David pointed out this morning, it wasn't.  I started treatment in the August, and by late October I noticed one morning that I was getting some feeling back in my feet: I put them on the bare wooden floor, when getting up, and it felt cold!  I soon found though, that the return of feeling was a bit disorientating:"Walking is a little more disorganized. Recovery is not just a case of the simple return of function. Repair takes place at a cellular level, and is not centrally organised. As repair takes place there are any number of strange sensations - Sarah says they are quite indescribable - which, until they become organised, actually hamper function. Function has to be relearnt. She makes the point that ‘it is easier to walk on numb legs than on legs where unordered sensation is returning.’ There are motor counterparts to this - twitching of fingers and minor involuntary movements of limbs - but these are minor. Sarah has noticed that these events herald a big improvement in function. Recovery takes place in a step-wise manner, as function is re-learned."  Taken from David's log of my recovery on his web page: http://www.davidwheldon.co.uk/updates.html  I would advise you to read the rest of the recovery period.  He has taken it right up to last year.
I am pleased to say that apart from one short period of dimming of colour vison in my left eye, my eyesight has remained untouched.  I guess this would not have lasted long though, because after starting treatment I went through a period of when I closed my eyes at night I would experience what I can best describe as 'low-level flashlight.'  I experienced this for several weeks, then it gradually stopped. I experienced it again a few months ago, but this time only for three days.  Also, still the only glasses I  need are sunglasses in very bright weather.....................Sarah
Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Hi Sarah,

it’s a worsening of MS symptoms, i even fell while kneeling on the floor! The hypotension had been greatly improved by the cobalamin, but no longer! The cardiologist only prescribed support stockings, which lay ignored in the drawer, and steroids to help my autonomic system! My thyroid tests were fine, although the bar seems quite low! I re-read David’s site (several times in recent days) and yours, in hope of finding something immediately relevant to me! I won’t give up on the CAP, but i’ve been feeling i should accept my MS state!

Jane

MS symptoms from 2001, DX RRMS in 2008, following, a change of hospital who sent me for an MRI, precipitated by some sight loss. Took Interferons, on and off. Prescribed  chemo infusions to slow pro

Jane, don't talk like that and never accept your 'MS state!'  You really are just going through a two steps forward and one back episode, believe me!  At least if you were kneeling down when you fell over, you can't have really hurt yourself.  A few years back, after I had finished my intermittent period, I was making a sharp turn to the right to go into the kitchen, when I blacked out and fell forward into the shower room.  I knocked my forehead on an old cast iron radiator and ended up spending Christmas with two black eyes.  I might have been carrying a half empty glass of Cahors, but I was not under the influence!

As for support stockings, if they are those horrible NHS things, I'm not surprised they are still in the drawer: best place for them!  Did the fall maybe have anything to do with trying to reduce the steroid dose too quickly?Anyway, soon it will be spring and a few sunny spring days will help you to feel better: this time of year is one of the worst for making people feel depressed when they are working at getting better.  I have years worth of letters and private messages to show that.......................Sarah
Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Thank you Sarah,

that helped raise my spirits, and you’re right, falling that close to the ground is ok, it’s why i generally sit on the floor!

Jane

MS symptoms from 2001, DX RRMS in 2008, following, a change of hospital who sent me for an MRI, precipitated by some sight loss. Took Interferons, on and off. Prescribed  chemo infusions to slow pro