Hello again! I have had a bad reaction to the second Pfizer jab and the flu jab which I had two weeks ago. After a few hours I cannot move my legs at all. Last time, this resulted in me falling in the shower room (I needed a wee!) and Dave phoning 999 so I could go to hospital by ambulance. I am now due the booster jab which is apparently stronger, so concerned that I needed to manage this situation, I phoned the GP. He said perhaps I shouldn't have the booster so I told him that medical consultant had advised that getting covid would be a lot worse than this reaction (clears up after two days). GP then asked me what I would like to happen. I said to be admitted to hospital via A&E before my legs went. He then said he would write a letter explaining the situation to A&E but GPs have no power to tell A&E what to do.
On reflection, this leaves me feeling out on a limb. I've been advised by an admin to phone 111, which I will do tomorrow. I'm wondering if anyone else has had bad reactions and also, what advice would you give please?
This news appeared a couple of days ago, and sounds like it will be bad news for many MSers.
“Gabapentinoids are set to become controlled drugs, after a spike in the number of related deaths and series of studies warning about the adverse effects of the medication.”
From:
Pregabalin and gabapentin set to become controlled drugs
http://www.pulsetoday.co.uk/clinical/more-clinical-areas/pain-relief/pregabalin-and-gabapentin-set-to-become-controlled-drugs/20035333.article
and
“The government has now accepted in principle that pregabalin should be reclassified as a class C controlled substance, which would mean patients could not obtain a repeat prescription.”
“It would mean the drug could not be repeat-dispensed and prescriptions would only be valid for one month.”
From:
Pregabalin, known as 'new valium', to be made class C drug after deaths
https://www.theguardian.com/society/2017/sep/21/pregabalin-new-valium-class-c-drug-deaths
How will this affect the many of you who take pregabalin or gabapentin?
Hi all,
I posted a while back in 2014 when I was diagnosed with RRMS and everyone was very helpful. The support really helped me through. I am 'going through the system now' - I have an MS nurse and a new neurologist, but I guess like many of you my first port of call is the GP.
I had my first demyelinating episode in 2010 when I had optic neuritis, cue a week in hospital for blood tests, x-rays, VER, lumbar puncture and MRI. I had 3 days i/v steroids and my vision came back pretty well but I have had a central blurred field with a broken black outline ever since. 6 months later my hands became weak, and I could not grip. They improved, but still tire easily, and they get tight and clumsy. I have also had issues with balance, with my bladder, and with progressive fatigue. The fatigue used to be episodic, now it's pretty much constant. I used to work 60-70hrs a week and be 'on-call' 1 in 3 nights and weekends. Now I work 33hrs over 3 days, one night a week and one weekend in 6 'on-call' but it takes me all my time off to recover.
In 2014, at my request, and mainly due to the fatigue I asked for another MRI which showed new lesions and that's when I got my definitive diagnosis.
In Feb/ March of this year my left leg decided to play up. It started with intense, stabbing pain around my ankle, then pins and needles which faded over a week but left me numb over my foot, I could not feel a needle prick (to the point of drawing blood) or hot or cold. I went to my GP who noticed that my foot was weak, but he did not elaborate or say what I should do. I spoke to my MS nurse, who arranged a follow up with the neurologist for me. I have that to look forward to the week after next. But, like my eye and hands, my foot has not returned to normal. Most of the strength has come back, but it is tight, the sensation is not as sensitive as my 'good' foot and i still have pins and needles spreading up the leg. If I touch certain places I get a prickling sensation.
Whenever I ask a medic what is going on they tell me I have recovered within the limits of their tests.....but I know none of these things feel right! I've written all this down and sent it to my neurologist in advance of my appointment, but I am cynical enough to know it is unlikely to get me the answers I am looking for! So my question to those with direct experience is, is it 'normal' to be left with mild after effects, which I imagine as a type of scarring, after a flare up of RRMS? My MS nurse has suggested it may be related to the fatigue, and certainly that can make it worse, but the niggles never completely go away? It's frustrating because I feel like they do not believe me, and as well as wanting to understand what is happening to my body it is a physical problem. Ok, maybe not my foot, that's just annoying, but my hands and eyes have a very real impact on my work.
Which is another question if you can bear with me! On the subject of work, I hate to admit it but I am not sure how much longer I can continue with on-call overnight. While sleep does not cure my fatigue, it is hard to function at all without it! But I have no idea if or how I could broach this with my employers. We have other people who do the same job as me, and do not do on-call on medical grounds, but this was their position from the start where's mine has / is changing. Not an easy conversation to have when most of my colleagues fail to understand my condition, let alone 'them in charge!'
Thank you all x
I wonder if any of you can advise, do I need to work down off Gabapentin completely before starting Pregablin or can I just switch?
Doctor didn't advise.
I have gradually reduced down from1800mg Gabapentin to 900 but don't know if I need to work all the way down first?
Edited by Scully to include tags.
Hi,
I gave in and went back to the doctor today. The pain and muscle tightness in my legs and feet is causing problems day to day but also this burning pain in my ankle is really getting to me, getting worse and starting to keep me awake at night.
I couldn't narrow it down to any particular cause and it appears and disappears, sometimes lasting hours sometimes minutes and in between - nothing. Of course when I got to the doctor, although it had been on and off all day, there was nothing but he prodded and asked lots of questions and ruled out injury or muscle/tendon problem.
So I agreed to go on Gabapentin on top of the Amytriptline.
Does anyone else take this?
Have you found it effective?
Any side effects?
Thanks as always.
Katie
Edited to include tags to other topic links
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