Multiple sclerosis is such an unpredictable disease
Multiple sclerosis can tie you up in knots
I am getting my life back onto an even keel. Botox is working, Fampridine looks like it’s a winner and spring is in the air. Just when I think all is looking hunky dory and everything is under control ,BANG, something hit me in the solar plexus. Multiple sclerosis is such an unpredictable disease. It upsets the apple cart of life so easily.
Multiple sclerosis is such an unpredictable disease
I woke up on Thursday morning at seven and wished I hadn’t. I managed to stagger into the bathroom and brush my teeth then I crawled back into bed. What had I done to myself. No relapse, just that old friend multiple sclerosis.
‘I didn’t drink a drop last night and I’m not overdoing life’ I thought to myself. It felt like either the after effects of a bottle of whiskey or 15 rounds in a boxing ring. My head hurt, body ached. I felt awful.
I took two paracetamol then a lengthy doze. MrsB brought me a cup of tea but I could still hear the cymbals in my head.
At about 11.00 I got dressed. MrsB talked things through with me and we could see no rhyme or reason why I should feel so awful.
‘Go to the doctor’ she said
‘No I don’t think the doctor will be any help’ I said. I thought about things or at least I tried to. I had to talk to someone who understood me and my medications.
‘That’s it” I thought to myself. Ring up the MS nurse and see what she says.
So many effects from MS
I rang the MS nurse
I rarely speak to her but I had a number for her on my mobile. She answered the ‘phone. I said I wasn’t feeling too bright.
‘What medications are you taking?’ She asked.
I told her. ‘I have just started Frampridine’.
‘Oh!’ she said. ‘And what else are you taking?’.
So I reeled off ‘Gabapentin, Tizanidine, and Clonazepam’ and I told her the doses.
‘Stop taking Fampridine and give me a ring this time next week and tell me how you are feeling’. No messing about
12 hours later
I have not felt so good for a long time. I woke up this morning and actually wanted to get out of bed, pretty good start. A feeling of malaise in the mornings had slowly developed over the last four or five weeks. I think it’s a bit like depression. I don’t know I am depressed until I snap out of it then I realise I was not in a good place.
The doctor at Queen square rang me up. I told her I was stopping Fampridine for at least a week; she suggested I talk with my consultant. In fact I’m seeing him at the end of the month.
Two days later
Benefits of Fampridine have gone. Some old frieds have returned,I’m walking unsteadily with bad balance and I might fall over. Mentally I’m feeling much better in myself. Has this happened to anyone else? Multiple sclerosis is such an unpredictable disease, never a dull day.
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Did your balance continue to improve? Will you go back and try fampridine again?
John
Hello John,
Been off Fampridine for a week and I can feel the effects on my walking, balance and quality of life. Now I have cut Clomazapan intake in half and going to reduce Tizanadine by 50%. I have every intention of going back onto Fampridine, I might even start tonight.
If Fampridine is going to work you know more or less straight away and it takes about 1 week to reach optimum level and improvements then plateau
I don’t take any drugs except LDN which is my own choice so I’m not sure what they are all for. I’d be interested to know what drugs you take Patrick and what you take them for?
John
Hello John,
I get three drugs on prescription
1) Gabapentin – relieves restless legs
2) Tizanadine – stop spams in my legs, I only take it at night
3) Clomazapam – helps me to sleep at night and reduces a feeling of anxiety
The curious thing is that some people find these drugs do not work for them. Each person is unique as is their MS
I also receive Famapridine directly directly from the NHNN hospital in Queen square, London. This is not available on prescription. It helps conduction of messages along nerves, especially thoses damages by MS. Consequently walkign is easier and faster but not safer and I have more feeling in my finger tips. It improves my quality of life
Hi Patrick
So do you pay for the Fampridine out fo your own pocket?
One thing which has been getting worse for over the last few months is pain in my upper arms in bed at night. Apparently it’s caused by the lack of movement for a period of time and the MS of course, it’s getting to the point where it’s waking me up.
John
Hello John,
Not too sure if I have the complete story. Basically the supplier, who I think is Biogen, will give a trial period of tablets for free to person recommended by a clinic. If the trial is a success then Queen Square then give them too me after they buy them from the supplier. The drug is approved but NICE have not given the go ahead for it to be available on prescription. So no I do not pay for them but I think Queen Square is unique.
Sounds like you could do with some physiotherapy. Is there an MS Therapy Centre near you?
Glad you are feeling better.
As a person who like you is alsousually positive and active I agree with what you say about sometimes not realising at the time that one is not oneself. Just because we are not the “woe is me” type it doesn’t mean we don’t have ups & downs like anyone else.
I think mental health is just as important as physical health even when our lives are so dominated by the physical ups & downs of MS.
The MS is not going to go away so I reckon we might as well carry on trying to make the best of things?!
Hello Joanne,
In many ways mental health and well-being are even more important than physical health. The problem with MS is that there are mental issues as well as physical but all too often mental problems are very personal and very difficult to share and are usually hidden. Very important to look forward and up.
I won’t be 100% better until I’m back on the Fampridine but already I’m in a better place since cutting back on Clonazepam
I’m having a knot day, but I’m not on Fampridine just Gabapentin. I had bad reactions to Tizanidine and before that Baclofen.
In the end it must be the MS playing tricks and tying evferything up. Spelling included.
Look after yourself. All the best.
Hello Roland,
You have highlighted one of the big problems with MS. There are so many different reactions to the same drugs. I didn’t like Baclofen but Tizanadine at night is fine.
I’m sure I was overloading myself with too much of the same sort of medication. Can’t wait to restart the Fampridine. Need to find out works and stick with it, too oftennits trial and error
As I read your teaser “Fampridine looks like it’s a winner” I was thinking to myself “Beware Fampridine, lowering of the seizure threshold (documented side-effect) is life threatening.
Then I hit “More” and saw that – for different reasons – you had. I wonder what that MS nurse knows?
Neurologists (GG excepted) often disappoint me but nurses seldom do.
Hello David,
My MS nurse is a tough cookie and quite stubborn but is able to identify a problem remarkably quickly. It is great to have someone like that to turn to in moments of emergency.
The main issue is not overdoing the medication, I think I was. cut down on Clonazepam and going to reduce Tizanadine and planning on restarting Fampridine tonight or tomorrow morning