ln 34yrs of PPMS - l have seen a neuro about 6 times. Last week l did have an appointment to see one at the local hospital - he apologised for it being postponed several times and that l had waited 3yrs.
What have l missed?
Nothing!
He said how well l looked - l told him that l was taking high dose vitamin d3 - and was now going to start following the Dr Coimbra Protocol. --AND that for the last 17 months l have been on the Biotin for Progressive MS group - and had benefitted lots.
He asked what MS drugs l was taking - and l said only the ‘above’ vits plus extra B Vits magnesium - K2 and Alpha Lipoic Acid. as recommended by the MS specialists behind the MedDay Biotin trial and Dr Coimbra’s [a Brazillian Neuro] protocol.
He knew nothing of either of these.
Gave me a prescription for Clonazepam - because l said l still did not sleep well at night. l did not want them - looked up the side-effects - and as usual - they are not for MS - they are for epilepsy and seizures.
But l did decide to give it a try - so l have taken the minimum dose - and for 3 days have been so weak- have had to sit or lie down all day. lt is not that they helped me sleep at night - but they certainly stopped me functioning all day. So dangerous for anyone at risk of falling - like most of us. So last night did not take any - and this morning quite a different person.
This is why l will not take any of usual ‘ms’ meds - that have nothing to do with ms. Baclofen/Tizanidine/ amitriptyline.
Gosh - l feel as if l have been released from some terrible torture. Talking of torture l have a dentist appointment in half and hour!!
I think our bodies all react in completely different ways to drugs. When I first took Clonazepam - about 18 months ago - I immediately thought it was a wonderful drug. It did exactly what I wanted it to do, stopped spasms in my legs that were making my sleep a nightmare. I was waking up several times each night with really painful spasms in my legs that disappeared with the clonazepam. As a result, I’ve been able to reduce the Baclofen I take, and cut down on the Zopiclone I was taking on an ad hoc basis. I now only take 6 X 10mg of Baclofen a day, where I had been taking 8, and I only take Zopiclone about once a fortnight when I really can’t get to sleep. I’ve had no extra weakness from cloneazepam, and actually by reducing the Baclofen it’s had the opposite effect.
But other drugs have been a complete no no for me. I’ve had really bad side effects from every DMD I’ve tried (apart from Copaxone, which just stopped working), which means I’m out of options for DMDs.
My wife was given Clonazepam, quite soon after the Shingles knocked her for six - she only took them for about ten days but she literally lost two weeks of her life, she can remember nothing of those days either now or at the time, she was either asleep or very woozy for the whole time.
It’s quite staggering the number of different lotions and potions they’re prepared to shove down your throat, not really knowing what they might do. None of them have had any real benefit for very long, if at all.
I went for a trial for a baclofen pump but it just made me so weak I couldn’t stand. I dont know what the answer is, the only tablets that really benefit me are my antidepressants.
I have been taking around 0.5mg Clonazepam for night time leg twitching for years. I reduce the dose sometimes but eventually my leg twitching starts again and I have to increase the dose again. I generally feel fine the night after Clonazepam as long as I’ve taken enough to sleep through without being woken by twitching.
I was completely zonked by taking Clonazepam in the morning (because no one told me I should take it at night).
A friend of mine was given Amitriptyline when she got shingles. And they had the same effect on her ,as your wife had with Clonazepam. Baclofen and Tizanidine are my ‘arch enemies’ - and the frightening thing is - not only the effect they have on you physically - but the mental side. They left me so weak - in mind and body that l did not have the sense to realise that it was the meds that were doing it to me.ln fact, when my husband asked our GP for his advice he said double the dose. lf l had carried on with either of them - l know - with no exaggeration - that l would have been a full-time wheelchair user - and that was about 20yrs ago.
Hence my lack of confidence in our doctors. l was fortunate enough to have a friend who was a physio - sports injuries massage - and he would come to the house to work on my ‘wonky legs’. When l started on Baclofen [consultants advice] mentally l felt l could just not be ‘bothered’ in having my massage therapy - persuaded my husband to take my place. The physio, so concerned, bullied me into letting him take a look - and he was shocked at the state of my muscles - they were getting so weak. l could not stand - and even my head was too heavy for me to hold myself up. l was in a cabbage like state. Since then, l have learnt that these meds are only for very short term use as they cause lasting damage to muscles.
On the Biotin for Progressive facebook group - there are some very qualified people [with ms] and they are so good at sharing their knowledge. Same with 'Free lndeed - Vitamin D Protocol group.