I’m hoping someone can share their experience. I was diagnosed with MS after MRI’s, Lumbar Puncture etc back in December, though which type I have hasn’t been confirmed yet. I’m hoping it’s the Relapsing/Remission type as some of my symptoms (the worse being dizziness and disorientation) come and go. I am constantly tired etc and have problems walking with my right foot amongst other things, but the thing that annoys me most is pins and needles/muscle aches/spasms in my hands and feet, which I’ve had for about 8 months.
It’s very frustrating and I long to wake up and find that the sensations have disappeared over night…I guess I’m just wondering whether anyone else experiences these and can give me hope that they may disappear, or whether some of you have had them for years. I know MS is different for everyone and there is no definitive formula to it, but I’m looking for a positive spin…
There are a lot of irritating and often crippling symptoms that come with MS. Some people find that symptoms come and go. MS isn’t predictable at all. The good news is that there are appliances and medicines that can deal with the problems.
If you haven’t got an MS nurse, talk to your GP about the symptoms that you are experiencing. There’s no reason for you to struggle on without getting some relief.
I was diagnosed out of the blue almost two years ago. Initially as rrms and on DMD. However as year later, with swiftly deteriorating mobility, Neuro and I agreed it more likely was ppms. Really only time will tell, when your profile builds a fuller picture.
I find Magnesium spray a great help with numbness and spasms. I use it at bedtime to help get a (half) decent night’s sleep. I spray onto my palm and rub into my kness and the soles of my feet. I don’t have the dizziness.
Assuming you are diagnosed with relapsing remitting MS, you can sometimes find that a relapse takes what seems like forever for the symptoms to go away. Then one day you wake up and realise it’s not been as bad for a few weeks. This can of course be caused by your compensating for the damaged nerve, but often it is just a really slow resolving relapse. It’s not as if the ‘wake up one morning and find its gone’ doesn’t happen, it’s just more likely that a slow improvement is more usual.
You haven’t said, but when are you expecting to be told what variant of MS you have? Most often it is RR, and the sooner you start on a disease modifying drug (DMD) the better.
Have you been given an MS nurse contact? You should try to get an appointment with one. They can be worth their weight in gold and will help you through the maze that is an MS diagnosis.
MS is a bugger, mostly i think, due to the amount of uncertainty that surrounds it all. I therefore have a few thoughts for you:
As you have had MRIs and LPs etc, you have certainly gone through a neurologists office. If you need answers to questions or to suggest some form of action, approach the neurologist’s office instead of the GP. You will get a better response sooner.
If at any point your feel considerably worse, go to the A&E of a hospital that preferably has a neurology department (they should / usually have a neurologist on call 24 hours a day).
Presume that you have RRMS. Most people do. Only very few develop to SPMS and even fewer have PPMS straight away. So be optimistic; the odds ARE on your side
Now that we have all decided that you have RRMS, you are eligible for DMDs. Again, approach your neuro to get this sorted out. I could suggest which to go for, but we can leave that for another day once you have been granted ‘permission’ to start popping pills / jabbing needles.
MS is indeed highly variable for everyone in the symptoms it brings and the severity and duration of each. The best comparison of what you have and whether things are getting better / worse is you! And so keep a diary. Record through time what you feel and when you feel it; note how it feels, whether it comes or goes, gets better or worse. A symptom of MS can be brain fog in itself and so how you are supposed to mentally keep a check on all things and then gauge how they change over a passage of time is frankly, not possible. Write it down / type it out.
Beyond all of this, treat yourself like royalty: Quit smoking if you do; drink booze moderately and stop eating crap food. Go to the ‘overcoming MS’ www site and follow its guidelines. Start taking vitamins. Sunbathe your mushrooms. No more microwave meals and fry ups. Get a good night of sleep as often as possible and DO NOT STRESS (easier said than done i know).
Doing some or all of the above might help you in the months / years to come. They certainly did wonders for me!