Hope you are all coping with this heat as best as you can.
As MS has many different sumptoms I just wondered what symptoms we all have on this site. No two people seem to be the same.
I was d/x in 2005. My first symptom was ON and it was the Eye Hospital that originally picked up on it and referred me to a Neuro who did MRI, lumber puncture and VEP tests and d/x RRMS, which has now progressed to SPMS. Since 2005 more symptoms have developed ie drop foot, painful spasms, very heavy legs,total intolerance to heat, numbness around torso, bladder inefficiency and fatigue.
It would be really interesting to see which symptoms seems to crop up the most with all of us. I would plump for fatigue and ON.
Mine started off in 2008 with numbness and tingling in my feet and rapidly progressed to total lack of sensation from feet to chest. I was referred for an MRI but didn’t get diagnosed until 2011 by which time I’d had another MRI, a lumbar puncture and several relapses. Oh yeah, look…it’s MS!
My current symptoms include a very weak left leg, stiffness/spasticity in right foot and right hand, numb hands and feet, weird thing with my speech where I can’t get my words out, occasional loss of vision in left eye and the always popular, never embarassing, bowel and bladder dysfunction.
Think that’s about it (today anyway). On the bright side, I’m still working, have a great job and 2 gorgeous kids. And I rule at Scrabble!
mine also started with pins and needles in my feet (which were also numb) and this spread to my middle. Its horrible going to the loo when you can’t feel your bits!!
12 years later I still have tingly feet - 24/7, it never goes away and my middle has no feeeling. I have a few problems swallowing but as long as I have a drink its not too bad. Muscle spasms, usually in my tummy - think Freddy Kruger with his knives buried in your innards and then twisting, spasms also in my hands. Minor fatigue - nothing really to complain about cause sometimes its part fatigue and part me being a lazy sod and giving in too easily. The only other one I have is severe lack of balance, I can twist my ankle standing still and in my bare feet. I think thats quite impressive
All in all I’m very lucky that mine are as mild as they are. I still do a bit of belly dancing cause my balance is better then I’m moving (go figure) and I still go to the gym enough to feel guilty when I skive.
Thanks so much for your replies. It is really interesting that we all seem to be suffering with the same stuff so I reckon we are more alike than some people say symptomwise.
Congrats on being pregnant Ellie and keep Scrabbling JakeZander
I get occasional foot numbness and my right side goes completly numb if I lay down flat. The only other thing I notice is my left arm isn’t quite right, can’t fully explain how it feels, just not quite connected.
Other than that I actually feel a ton better than I did before I was diagnosed. I don’t feel ill at all.
Like for example today I went for a 19km bike ride, I haven’t been able to do that in years.
I’m newly diagnosed I started off with pins and needles around my stomach and right arm with numbness,thought it was down to having my youngest son! I now get really exhausted some days others I’m fine, I get the lhermittes thing when I bend my neck like a pins and needles buzzing sensation and a mild pins and needles without numbness that feels like insects crawling me?! I get alot of headaches too.My last relapse affecting both my legs pins and needles and numbness from my hips down I am not liking this heat either!
Numb feet, burning/heavy legs, crawling/itchy skin, fatigue, spastic gait, pins and needles, bladders issues, and permanent skin issues. Most of these are everyday symptoms, and yet im supposed to rrms (although severe, highly active)
My very first symptoms were slurred speech and difficulty writing (which was logged as right hand weakness although it didn’t feel weak; I ust couldn’t write properly). I made a full recovery that time and have had not had a repeat of those symptoms - I’m pleased about that as I couldn’t communicate very well at all!
Right now, my symptoms are:
Constant numbness and/or pins and needles in my left hand. Right hand also affected if I’m hot or tired.
Numbness or tingling in my feet most days.
Bladder plays up sometimes but is mostly fairly well behaved as long as I remember to drink plenty of water and lay off caffeinated drinks.
Bowel is all or nothing.
Stiffness in legs following a relapse in March. In the past 3.5 years I have only had the odd few days where my legs are painful and stiff so if I can get them back to that I will be pleased.
Poor balance occasionally, especially on hot days. I work as an administrator in a high school and I’m waiting for one of the students to report me as being drunk on duty
diagnosed march 2012 with optic neuritis, before that it was tiredness, headaches, migraines, speech probs, memory probs, since 2012 its been all the above but with increasing leg weakness and bladder probs, heat makes me extremely tired, very irritable and my body feels like its on fire all the time, ooh the joys of having ms
I had ON and was dx in march this year went downhill pretty quick balance problems, pins and needles, hands not gripping, bowel problems ( which i have had for a long time and now know its due to the MS) chronic pain, dizziness… the list goes on
But more recently i have major problems with my jaw!!!Struggle to chew as get really bad jaw ache and its horrid so basicallly been living on fruit add that to the swallowing issues and i’m having a great time!! ( i dont grind my teeth or clech it shut wen im stressex)
Thanks Jelly/Belly/Kelly, Bubaloo666, Mrsg33, ThesheriffJW, Elmo and tenaka07 for replying.
I reckon it is fascinating to see how similar our symptoms are.
I think balance, ON, pins and needles, heat intolerence and bladder probs are the most popular symptoms so far. (popular doesn’t really feel like the right word to use but I couldn’t think of another).
Now I can see why we all know how we are all feeling.
My symptoms go back 31yrs - and like all of you its bladder/bowel control [or lack of]. Slurred speech was my first problem which did go away. But foot-drop and lack of movement in left side has been with me all this time. Fatigue of course - ms fatigue l think is hard to describe to non-ms’ers. For me it is as if someone has pulled the power plug out of me.
For years l suffered with Trigeminal Neuralgia - horrific pain that nothing seemed to relieve. Since taking LDN - it stopped. Could be a coincedence - but l would not like to stop taking it in case it all came back.
After all these years of having to use my ‘good’ side to carry the ms side l have ruined my hip/knee/ankle.Over compensating. So now after struggling for years to keep mobile - its not the MS -but arthritis/abnormal wear and tear of the ‘good’ joints that are now my main problem. Recently, had hip replacement - but still in pain because of knee/ankle. You can’t win.
Best foot forward - but l haven’t got one.
Still think the bladder/bowel problems we all seem to have really make our lives so difficult. Especially, when you can’t get there quick enough.
Never had trouble with my eyes - so thats one l avoided - so far.
Hi, I had problems with my eyes, ON I guess it must have been (1989) and double vision (1995) both of which cleared up. But really since that attack of ON in 1989, I had problems with my legs and balance on and off, this eventually led to diagnosis (end of 1995). Since then my balance and legs have become a lot worse and these days are so bad that I only manage to walk about the house and my work with my push along walker and go in my wheelchair for longer distances. That aside, I don’t have many other symptoms, I don’t think my right arm is as good as it was but it’s not obvious to anyone other than myself and it’s really not bad at all, just not as good as it should be but often it is fine and I don’t (yet) regard it as a problem. I don’t suffer from heat intolerance. I thought it felt a bit hot last week (especially since we drove from Aberdeen to London in the car and then back again a few days later) and it was unpleasant in the car in that heat but it didn’t affect me ms wise, I wouldn’t have been bothered at all if I hadn’t been sitting in the car for so long. I don’t suffer from fatigue either. I still work part time, the part time due to my children rather than ms. Cheryl:-)
My first symptoms (20 years ago) were fairly mild problems with my balance. These were bad enough to get me diagnosed six years later. Since then I’ve accumulated bladder problems, really bad walking problems (mostly caused by spasicity, drop foot and weakness in the muscles in my thighs), and muscle spasms in my legs that wake me up at night. I still cycle, on a bike with a motor to help me get started and go up hills (or just to go along on a bad day). I often have to lift my right leg onto the pedal with my hand (sounds harder to do than it actually is).
I am on drugs for all of these things. Clomazepam makes the muscle spasms go away completely - they always come back if I experiment with stopping it. Fampyra helps with my walking - I went from using two sticks to one when I started on it. I’m on Regurin for bladder control but still struggle with this and am planning to try Botox injections because I’ve heard good things about that from one MSer. I already self catheterise to help with frequency of going to the loo. I have had constipation but don’t have it as long as I have a tablespoon of linseeds with every meal. Reading other people’s posts on symptoms makes me realise I’m lucky to have mostly ones that are somewhat susceptible to treatment.
I am not liking this heat either!