Hi, I was given a brief summary of the results of my cervical and thoracic MRI this afternoon. Basically no evidence of demyelination but arthritis was detected in my neck. Arthritis wouldn’t cause the various symptoms I have been having other than the odd pins and needles and ironically I don’t even have any neck or shoulder pain so I am bamboozled and to be honest just a little bit down about it all. I have an appointment with my gp next week so will discuss it with her then. Lumbur puncture is totally out of the question as far as I am concerned. My thoughts at the moment are just to carry on as I am and if the symptoms get worse and/or unmanageable then will go from there. It’s all I can do really.
I can see why you’re feeling down about today’s results. No one wants to have MS, but sometimes having an answer is more valuable than living in the land of limbo.
If there’s no evidence of demyelination from both brain and spinal MRI scan, then there’s no point in having a lumbar puncture.
It certainly seems on the evidence so far that you don’t have MS. But obviously, this forum is full of people who’ve had negative results for years before finally getting a positive MS diagnosis.
However, you now have to find some way of managing your symptoms without any diagnosis. You’re absolutely right to go and talk it over with your GP.
And as time goes by, either you’ll find you are tested for something else that answers all your symptom questions, or you’ll find medications that control your symptoms that you’ll be able to live with. Or of course, you’ll eventually be re-tested for MS.
Hi Sue, you are right , it’s definitely not a diagnosis anyone would want. I think that the problem is that you start to wonder if it’s all in the head (no pun intended) or worse still, your nearest and dearest think it’s all in your head. I have kept a note of all the things going on with me so I can discuss with gp next week. I am managing fine with the symptoms I have just now so will just wait and see what happens in the future. I know I can always get re referred if I need to. Daffodils
may I ask you what your symptoms are?
Hi Crazychick, Started off with being off balance, weak and painful right leg and speech problems. I have had double vision for a few years but didn’t bother about it as optician wasn’t concerned. Then in the last few months along came prickling all over my body including face and scalp, extreme facial neuralgia, ‘chill’ sensation going down my leg, feeling of something crawling on my leg, bladder issues - bladder doesn’t empty fully, urine infection, numbness and tingling on tips of some of my fingers, intense itching all over which is the reason I am typing this at half midnight as I can’t sleep because of it. That isn’t the full list but these are the symptoms that are the most bothersome.
I cant see these symptoms being caused through arthritis either. You can get these with M.E but you dont seem to be overly fatigued which one would expect with M.E.
I was told with my first MRI scan way back in 2007 i could have had some demylination but the radiologist decided it was my age.
10 years on and I got diagnosed with MS, but there was lots of MRI, LP and VEP tests in between.
I had all of the above BUT then so have a few of my friends who have had M.E. and fibro and Lymes. Its a long road to finding answers.
I think its a wait and see issue. IF its MS i always told myself it would show itself eventually in tests and it did, but in the meantime, i kept off Google lol, and just got on with things.
Also out of curiosity think about when it started these weird things? Sometimes there is a clue. I was lucky as my neuro and GP both believed in me, he threw out things like M.E, fibro etc, and was convinced i had an inflammatory disease was just frustrated he couldnt put a definite answer to it, until February. So keep the faith, hopefully whatever it is, will resolve itself.
Hi CrazyChick, yes I am just going to carry on as normal and see what progresses , if anything. It’s difficult to think back to any particular event as I am the type who ignores things on the basis if you ignore it , it will go away . I would only go to my doctor if I thought something was seriously wrong. Anything that lingered I would just put it down to the menopause or stress. I think I have experienced tremors, internal and external, for a decade or more. My double vision only started a few years ago. I can’t cope well with heat (I get panicky if I get too warm) but again that has been probably for about a decade too , maybe a bit less. All these things and other symptoms could well be menopause related. Last summer I noticed I was forgetting words, dropping sounds, randomly stuttering etc but again I ignored it. It was only when my leg gave way from under me this summer that I went to my gp. She said she thought I could have MS and referred me to the neurologist. Neuro said she also thought I had MS based on the neuro tests she did with me and organised the MRI’s but they are normal. I see my gp next week and neuro in January for follow up. Last few days I have been getting constant prickles all over my body but today it is very slight. I seem to get 3 day periods of this and then it calms down for a week or so and then it starts up again. I am not suffering from extreme fatigue at the moment although I did have periods of this in the past 10 years or so (menopause again?) . There is definitely an issue with my right leg. It gives me a lot of discomfort and I struggle after about ten minutes or so of walking, especially on hard ground. Anyway, as I said before I will just carry on as I did before I saw the neurologist and just watch out for any significant changes in my symptoms. Xx
Hi, that’s what I resolved to do when my MRI was negative last year. This year I had another relapse and the hot bayh seems to effect my numbness. Im still waiting to see the same neuro he was really nice
I hope you get answers this time Cosine. It’s definitely harder not knowing what’s wrong than knowing.