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Advice on symptoms, awaiting diagnosis

Hi everyone, I am Sue, This is my first post. In am looking for some advice please. I have been treated for a herniated disc with nerve compression for over a year. After a repeat MRI scan I was told there is no longer any disc bulge. I do however have leg numbness, spacticity in knee and back of my thigh. This is now moving into my other leg. I have a terrible burning pain in my back. Cramps and jumpy legs and massive nerve twitches all night. For years I have had an unexplained flashing blue light in my line of vision and can smell burning or cooking smells all the time. I have dizzy spells, fall over my own feet or fresh air and feel my memory and concentration is going down hill rapidly. I get up in the night to pee at least 3 times if not more and have constipation. I also keep buying my tongue and lips when I eat, which really hurts! My GP has done bloods to rule out any thing else and has now referred me to see a neurologist. From what I have read everyone's symptoms are different but can anyone relate to this long list of ailments, I've not seen any comments on people biting themselves! Thanks in advance and sorry for the long post! Sue.



Hi @suewy and welcome. The symptoms of MS are wide and varied, https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/symptoms . These are relative to the exact location of the MS damage on our Central Nervous System (CNS), covering our brain and spine. The only advice we can offer is to make a list of these possible symptoms. This should be useful when the Neuro builds up your clinical history. Otherwise, there's not much you can do until this appointment. Just try and manage your stress levels, as stress is very damaging to us.



Hi Sue, You don't actually say if you have been diagnosed with MS? Or do you just suspect? As stumbler says the symptoms of MS are indeed wide and varied. I would go as far as to say you would be hard pressed to find two identical cases. If you have already had spinal nerve damage this would indeed mimic many symptoms of MS. It should be remembered that the term 'Multiple Sclerosis' simply means ' A Lot (Multiple) of Damage(Sclerosis)' lol. Put another way...your symptoms could have many causes, and its only when they rule out what it isn't, that they apply this term. I.E. " We have no idea what then problem is". Umm... so it's MS. Which again, only describes the symptoms....cause as yet unknown. Every sensation you have goes through your spinal cord, so if there has been some damage in the past it may well heal. I have SPMS and I bit my tongue and lip frequently when I ate, so I now use more caution..haha. It changes day to day, so I don't worry too much. I have massive nerve twitches at night, and I find that a pillow under the knees can help. Also try and do a full stretch of your legs to their full extent in bed, before you settle. We all tend to adopt the 'Foetal' position in bed, which is not a good idea as the muscles like to contract and stay that way when you come to! Don't worry too much about going to the loo 3 or 4 times a night, I've been doing that for 3 years now, as have many. Just try not to drink after 9pm. Constipation? Well, that was a worry for a long time, and the more you worry the worse it gets. Your mental concern transfers to your bowels... sounds daft but it's true. It's down to a basic "Fight or Flee" reaction when we feel threatened. In times of stress your bowels will do one of two things, seize up, or let go. And...When you get frightened your buttocks clench. I started eating one small bowl of ''All Bran" a day and generally watched my diet for fibre content and I have been OK. Nothing to do with MS, but it gets rid of one small niggle I can do without. Your memory lapses and concentration levels are simply because your mind is pre-occupied with worrying. Your subconscious fears are taking over. In short Sue, you have to try and relax a bit... you aren't about to die yet! Don't let your fears and anxieties make things seem worse. You will focus on all sorts of things which you would normally have not given a second thought to, and assume they are symptomatic, and they are not. Just try and keep your mind off the negative..xx Sean.



Sue, Your personal information states you "might have MS" so don't jump the gun... Wait & see! Having said that I had semi-successful spine surgery 15 months ago; then diagnosed with PPMS nine months ago. Many of the symptoms you mention are mine. Especially the biting of my tongue & inside my cheeks while chewing; but I have done that for decades - now I eat very, very slowly. The only thing I do not have are the flashing blue lights or the cooking smells. Having said that, relax & find a way to work around your challenges. Enjoy life while they figure out what is going on...



I can only add that if it turns out to be MS, things WILL improve once you're on treatment and being monitored. It's only then that you'll start taking control and getting your life back. At the moment you've got the worst of all worlds - symptoms and no answers, no-one who is seeing the full picture and giving you the treatment you need. No surprise that it's all so awful, and as has been said, the stress of everything will be adding to the mix. Try keeping a brief daily diary of symptoms, in a format that you can hand over to the neuro at your appointment. Organise this to be done at a set time of day, use that time (ten minutes or so) to concentrate and reflect on what's going on in your body. Then when you've written it, discipline yourself to stop thinking about symptoms - until the same time the next day. Instead, focus on any little treats you could add in to your day - doesn't matter how daft: chocolate, red wine, new shower gel, massage, cinema etc. etc. Sending big hugs, because we've all been there, xx Kay



Hi everyone, Thanks for all the replies, they have been most helpful and thought provoking. I will try to carry on as normal until I see the neurologist, hopefully that will be soon. Who knows it could be something completely different and there's no point worrying until I get my diagnosis.😊 Sue.x



Sue we have had many people join the forum who thought they had MS and it sounded like MS symptoms. The test results were for another problem, they don't tell what the results was, they drop out of the forum. Potter



Hi Sue - I don't have anything to add to the excellent responses you've already been given. I was curious about the knee spasticity though. Why do you believe you have that? I don't think of the joint itself as having the condition. I do hope you get answers. Glad to hear you don't have a bulging disc any longer. Having many orthopedic spine problems - I know it can be a real bear! Blessings to you. Jan



Hi Jan, The spaciticity starts in the muscles or tendons in the back of my knee then spreads up to my buttock and down to my calf. I end up swinging my leg out in a circular motion to walk as it will not bend. Also if I stand for any length of time when I try to move it's like the tendon under my kneecap is tearing, it is agony. I also get the tightness in the muscles in my other ankle and calf when I walk so I end up hobbling home. I'm just lucky I only live 5 minutes away from my workplace 😁 Thanks again to everyone for all the responses, I will try not to worry until I get some results but it is on my mind 24/7 at the moment!



My neurologist ruled out other diseases and through MRI and lumbar puncture which shows certain β€˜stuff’ in your spinal fluid, I was diagnosed with MS After many years of missed diagnosis. I did have prior and subsequent lower back issues (herniated disc) which I believe was secondary to MS right on through excessive spasticity etCetera. If it does turn out to be MS you got it at a time where there are fortunately many effective therapies that did not exist 20 years ago.