Morning :0) I have a question about people’s symptoms. I’m not dx’d yet but do your symptoms come and go or do you get some constantly? Say for example, I could tick 15 MS like symptoms but I don’t get them all, all of the time or all at the same time. Not sure if I’m making sense lol I’m just curious about how everybody’s symptoms manifest themselves. Thanks Sarah x
I wa DX Nov 2012 with MS after acute optic neuritis (AON) in Apr 2010. The AON started sudenly and then got gradually better but left a darker image nd color blindness in one eye. Some symptoms that lead to the DX of MS, bad balance, poor mobility have remained quite steady, others such as a numb scalp, prickling feeling and felling as if I trapped my thumb have fluctuated and disappeared.
I think this is the way of it.
In my reading, symptoms of relapses by definition last 24 or 48 hours or more but there are shorter episodes that are often caused by mixed up nerve signals resulting from loss of myelin around the nerves.
Some symptoms have stayed with me, but others come and go, usually depending on how tired/hot/stressed I am.
I’ve got PPMS so once a symptom has developed, it’s pretty much permanent - though I tend to notice them more or am affected more by them when I’m tired. I have a couple of things that are intermittent; I suspect they will become permanent in due course.
If you’ve got RRMS, symptoms ease up between relapses and may disappear completely.
In your position, I’d keep a record of what symptoms appear when and how long they last, and then take that record to my appointment with a neuro. It will help you remember what happened when, which will give him a better picture of what’s going on and will help him make the correct dx.
Thanks for the replies. Mitzi, that’s really interesting as it seems to fit my symptoms better. I do have some things which are there all the time like walking difficulties, bladder issues, balance problems and numbness in legs but sometimes the severity varies but I can’t see any obvious pattern in that there are no clear breaks. Then there are other things which happen randomly like dizziness, itchiness, muscle cramps, sensory stuff like hot and cold legs, twitching muscles etc. you’re right, I think I need to start writing down what happens when and maybe a pattern will emerge. As I’m 48 now I wonder if this is MS whether it’s PPMS anyway, of course it could be something else entirely. However, because the jigsaw all started piecing together after I was diagnosed with Trigeminal Neuralgia even my GP is wondering if MS is the underlying cause. I will start making a list of what and when ready for the neuro and will have to wait and see. Thanks for your input though, it has made things clearer in my head. Sarah x
I think that this is a very good idea. It is so hard to piece together with any accuracy what was happening when without a written note - particularly when things are coming and going without an obvious pattern.
Sarah, I’m just a few years younger than you. The reading I did pre-dx suggested that once a person is over 40, the likelihood of them developing PPMS rather than RRMS increases - though my first neuro didn’t seem to think of PPMS as a possibility (which is one of the reasons why I now see a different neuro!).
I notice my tingles more when I’m tired - they’re there all the time, but I’m more aware of them in the evenings than in the mornings. My balance definitely gets worse when I’m tired. The sensations in my feet, particularly whether they are hot, cold or both(!), are completely random but cramp in my feet and legs seem to be associated with them actually being cold - however, because the temperature sensations are shot I don’t always realise my feet are getting cold.
If there is a pattern, writing things down should help you spot it. However, you may well find that some symptoms have no pattern and no identifiable trigger - but at least by keeping records you can show that!
I was diagnosed wieh probable MS 2 weeks ago after numerous blood tests, an MRI, lumbar puncture and after suffering a bad episode which resulted in a stay in hospital. All my test results indicate MS but myspecialist says i need to suffer at least 1 more episode before he can make a definite diagnosis. I have been suffering with lots of symptoms including numbness down one side of my body, pain in one side of my face, numbness in my mouth, weakness in my legs and the feeling that they are about to give out beneath me, tingling and pins and needles in my legs and feet, weakness in one hand, loss of balance and many more that would take forever to list on here.
A couple of weeks ago i began experiencing extreme pain in my right hand around my little finger, after a couple of days a bruise appeared which gradually got bigger before disappearing. The same pain occured then on my left hand but with no bruise.The pain has now returned in the right hand and is made worse when i am work as a catering manager (rolling out pizza dough). Has anyone experienced anything similar as i am unsure if this is a symptom of MS or something else not connected.
Hoping someone can help me
I’ve been in an episode a couple of weeks now I’m waiting for it to let up it does vary day to day but it also depends on mood if I’m feeling good I barely notice them until they’re really in m face but on days like today, I’m noticing every little snippet and I’m realising how it’s affecting me. Mine was quite gradual onset it’s gradually been getting harder to bear. I’m hoping in a week or so it will ease off and it would be history. I don’t know if this answers your question, but good luck on your journey I wish you well!