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Symptoms, but clear MRI

Hi everyone,

Just looking for some advice/ opinions. Here is my story,

  • When I was 16 - pins and needles in my feet and hands - lasted 2 months
  • I went to the neurologist at the time and had VEPs done, these must have come back normal as I was discharged from hospital with no further investigations.
  • No health problems until now (age 27)
  • Since Oct 2015 - Started off with a slight headache, pins and needles in all limbs, feeling of weakness in my left leg and arm, although still able to walk fine. I also feel like I have a lot of stiffness/ soreness in my left leg.
  • Getting tingling in my left foot when I bend my neck forward
  • Blood tests all fine.

I have seen a Consultant neurologist, who is an MS specialist, he took a medical history, carried out a neuro exam and said that I should not be worried about MS, but ordered an MRI scan anyway.

In Dec, I had an MRI scan (without contrast) of my brain and full spine. Got a letter saying that the scan was entirely normal and the neurologist does not want to see me again.

I am now at a loss at what to do, as I have had these symptoms before and they don’t seem to be going away this time. Do you think I should push for further tests (LP, EPs), or leave it until something else arises (if it ever does)? What is the likelihood of having a clear MRI 11 years after first symptoms if it is MS?

Thanks,

Katie

Hi Katie, I think you should return to your GP. He/she will have had letters about your neuro`s findings.

If you still have problems, ask your GP to investigate further.

Keeping a diary of symptoms, could be useful too.

pollx

Hi Katie,

Your story sounds like mine. I initially experienced really odd eyelid flickering which went on for a couple of days, along with pins and needles in my feet. This was 12 years ago and an MRI and blood tests ruled out anything untoward. I was 27 at the time and had a toddler to look after so I carried on with life. The tingling sensation in my left foot has pretty much been there for the whole decade and the intensity would vary, sometimes I barely notice it, it worsens if I’m tired, Ill or stressed - at which point my right foot and left hand join in on the tingly action. It’s just been something I’ve put up with and its buzzed along in the background. I haven’t been back to the doctor about it.

Then last week I had experienced a burning sensation on my left hand. This lasted a couple of hours. Since then I’ve had tingling in both feet and also slightly in my left hand again. I feel exhausted and low although I’ve done nothing to make me get tired out.

Have you been back to the doctor since you received your neurologist letter?

Has anyone else reading this experienced similar symptoms before diagnosis or are you still experiencing it?

julie x

Hi Katie/ Julie

I am in a similar situation. I started experiencing tingling and weakness in my right leg and it quickly progressed to all four limbs, and then slight tingling throughout my whole body within a month. My doctor thought it was due to physical injury (carrying daughter on shoulders/ neck) but my neurologist said this was doubtful since it was throughout my whole body. MRI and EMG, XRAY, Bloodtest came back negative. My neurologist said what while MS is not on the top of his list of possible causes, he also said it cannot be ruled out since symptoms may develop over time and there are no definitive tests that can absolutely rule it out. Now he just told me to watch and wait (which is driving me insane, has me frightened, and has sent me searching through all kinds of forums for answers or people with similar symptoms, the most of which turn out to be MS patients). Katie- how have you progressed since your post - have you been able to get further answers? if so how?

Similar to Julie- wondering if anyone else has had similar experiences before diagnosis and any advice on how to proceed/ tests to take, for a clear diagnosis, etc?

Hi Joe

How long have you had the tingling? I’ve had it for almost twelve years and at the start I found myself worrying constantly and trawling through the Internet and the MS forum to find information. I got used to the tingling and it became normal for me - which of course it isn’t - but I had to get on with life and try to stop thinking about it as otherwise I would have driven myself mad. Try not to be scared and prescribe yourself time to be good to yourself and clear your mind - difficult when symptoms are driving you insane I know but i do find that the more relaxed and calm I am, the less intense my symptoms are.

take care, Julie x

Thanks Julie - I’ve had the tingling for two months now. For a while was living with it in the background as well, until it started progressing. At least with yours, its pretty much localised to one foot and not progressing (maybe a compressed nerve in spine?) But, for me mine started with one foot, then two, then both hands. Now I feel tiny slight tingles in my face and random places all over my body. It takes forever to schedule an appointment with my neuro, so I’m currently looking for another to get a second opinion. My last neuro just told me he wasn’t sure that it was mus/skel issue and then left me without any other options but still told me ms “is possible.” So now I’m going nuts. But you are right. I notice that anxiety drives up the symptoms and not doing me any good. Still, the more sensations I feel, the more anxious I get.

Thanks for responding though. Helps just to know there are others out there. Right now I feel incredibly alone and afraid. No one seems to get what I’m going through since they look at me and think “you look fine.” Good luck and keep us posted.

Hi Joe,if your neuro thought MS was a strong possibility you would have been at the front of the queue for more tests so i wouldn’t let MS be a real worry for you until you have a Dx. That’s not to say you don’t have anything else that needs sorted so like Poll says “get it checked out”. Sometimes you’ve gotta push to get what you want. Hope you get it sorted soon buddy…Tc & give the Gp hell till you get sorted…Terry

Hi all,

I think we should all be reassured by our test results thus far. I know people can have normal imaging whilst still having MS, but I think it does make MS a less likely cause. My GP is currently writing to my neurologist for some advice as to what to do next, so I am waiting to hear back from that.

Hi all,

From what I heard the resolution of MRI is too small in order to look at each individual neuron. Quite a large number of people I know with MS have a normal MRI imaging.

Hi everyone I’m new to this so hope I’m posting on right page lol I had symptoms from I was 12, went away come back early 20s went away again then 2013 I went down with my back took 11weeks to get me back to myself I had mri absolutely clear again 4 months later same happened with my back another mri back and brain, again totally clear, I knew I had ms just consultant thought I was crazy 6 months later back down again with my back and numb legs I refused to leave until I got another mri this one showed 11 lessions on my brain, 16 on my back…so don’t give up keep pushing if u no something is wrong xx

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Hi all,

I think the idea of the GP writing to the neuro is brilliant; I never thought of that. Personally, I thought that the neuro I saw was politely dismissive: the MRI showed no sign of stroke, tumour, or evidence of demylenation (sp?) so end of conversation and he didn’t need to see me again. Meanwhile, I feel like I have ginger ale coursing through my legs. And my lack of vision in one eye for 6&1/2 hours was a painless migraine? I think we all need to be advocates for our own health, whatever the cause.