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No diagnosis but problems

Hi there,

I would be very grateful for some help regarding where to go from here if possible.

I am female and 51 yrs. old. I have been having problems with aches and pains, especially in my back and legs, inc. cramp for the last 8 years. This has progressively got worse in the last 3 years. I now have problems with sensation, pins and needles, cramp and stiffness in my left leg particularly and my arms and hands. The left side is worse. I have problems holding things, and walking. Depending on the day it can be better or worse. I have put on weight due to lack of movement and being able to walk very well.

I tested positive via MRIs and have brain lesions in both hemispheres. I don’t think like I used too, get very tired for no reason and find it difficult coping at times. I had a lumber puncture which was negative. I have had diagnoses of MS, then not MS, then MS, and now not MS without any answers as to what is the problem. I had a neurologist who was awful and via her reaction made me cry in one consultation, due to sheer frustration. The latest neurologist has prescribed epilepsy medication, and anti-depressants, and has said that it is an emotional problem and not MS. I tried taking this medication for two weeks and felt unable to function and felt like a zombie.

Is this common, problems with diagnosing MS or could it be something else? I would really appreciate your support as I am on my own and in limbo right now. Thank you.

Hi,I’m new on here but feel so frustrated as back in DEC 2017 I woke with jelly like legs and my knees felt like they were going to give way.I did’nt see Dr straight away as I thought they would say its my weight.This went on for maybe a week/week and a half but half way through the week I had also got pins and needles down my right side of my body.I went drs and was sent to have emergency MRI of lower back.Came back clear. Had emergency bloods done too. Dr called just after Christmas and asked how I was and I said that it lasted about a week/week and a half then totally went again,he replied oh that’s great.I have spoken to neurology and they want full spine and head MRI . Had it done and it came back with lesions in my brain(front and sides) and in the neck (c2,c3 and c6) Seen the neurologist and he said with one episode this would not be M.S but if I have another episode then I would be sent for more MRI scans and if more legions then I will be diagnosed. In the mean time I have had lumbar puncture and that’s come back with inflammatory response in the spinal fluid.Abnormal antibodies known as oligoclonal bands that are in the spinal fluid but with no bands within the serum sample. I have had thing since MRI scan e.g stiffness/pain in neck,pins and needles in and out in leg.real bad memory.(which I was never like before),clumsiness,extremely tired all the time, but I have been referred to M.S nurse so any thing I have I can report to her and then she will see what to do next.Sounds to me like everything is pointing to M.S but unless I have another episode it will not be diagnosed. :frowning: The Dr should never upset you though my friend did warn me some of the drs can be hard.I would go back to your drs and see what they say.Can’t hurt to do tests again or check on you.Keep drs informed I’ve been told as new symptoms could possibly mean new legions.Hope you get it sorted.

You really have had a tough time Matilda. I am sorry.

It sounds like your neurological tests have confused the neurologists. A negative LP does not always mean it’s not MS. Just that it’s less likely. Lesions in the brain don’t always mean MS, it depends on where the lesions are, and the type of lesion.

The neurologist uses all sorts of information to come (hopefully) to a confirmed diagnosis. This obviously includes the MRI and LP, but will also include physical examination and also maybe Evoked Potential and/or nerve conduction tests.

It isn’t so unusual to have MS diagnosed, then not. It has happened like that with many people.

Have you looked at Functional Neurological Disorder (FND)? That shares many symptoms with MS.

There are other diagnoses that also share symptoms.

I do hope you can come to a confirmed diagnosis soon. It’s dreadful being left to worry and wonder in Limbo. I’m sorry I can’t think of any more useful assistance for you.

Sue

Hello

It sounds to me that the neurologist is saying what you’ve experienced is a Clinically Isolated Episode or CIS (Clinically Isolated Syndrome). Have a look at https://www.mstrust.org.uk/a-z/clinically-isolated-syndrome-cis

Talking to the MS nurse about what you should report as another episode and what doesn’t count will help. Your first symptom being only in December and clearing up quite quickly is a good sign.

Hopefully you won’t have another. But if you do, at least there are disease modifying drugs which aim to reduce the number and severity of relapses. Which means that you’ll be less likely to suffer disabling relapses.

Best of luck.

Sue

Thankyou Sue ,its sobhard to understand it all.Will look at that link now.Thankyou.

I just need help , i cant go on like this . It’s been going in for years and I just cant get anyone to help me . I want to peel my skin off its aweful i have so many problems and no doctors will help . I just cant go on

Dear All, Thank you for your useful advice. Very helpful and I very much appreciate the support.

I have taken the positive step and completely changed my diet after reading of Dr. Terry Wahls experience, and in myself I am feeling better, but with the same physical symptoms.

Changing diet completely had been an experience and interesting, and I would highly recommend it. All natural, vegetables, fruit, nuts etc. and vegetarian. I decided to help myself. I have a static bicycle and am increasing the time on it twice a day, although it is not easy.

I will look up Functional Neurological Disorder (FND).

Thank you again.

This really chimed with me. I ended up on the stroke ward of my local hospital this week after I stumbled into a&e incoherent, bumping into things and in a real mess. My blood sugar was 3.4 as well. I’m not diabetic. I started to get sick a few days before this. Horrible pain in my belly, hadn’t been able to go to the loo for ages. Blurred vision. I’m convinced I have ms. I’ve had three brain scans now, and keep being told I don’t as I only have one lesion. I keep getting sick though. I have periods where I feel great. But then out of no where get hit by bewildering symptoms. Feeling very down. Literally don’t know what to do.