@RooW

Last reply

RooW

MRI has come back normal

Hi, I'd really appreciate some advice please. I have had strange symptoms for over a year now (although also have a history of migraines and vertigo going back at least 10 years). Last May (15) I experienced painful hands and feet (both sides) with tingling and what felt like swelling (but never looked visually swollen). I was also very tired, but I put this down to my having to get up in the night a lot for my son who has Type 1 diabetes. This lasted for a week or so. I had a repeat of the symptoms in July/August which lasted for at least a month. This time I had so much pain in my foot that I had to strap it up and was prescribed Tramadol, which made me feel very odd. I had bouts of extreme fatigue, but again put it down to sleep deprivation. I was referred to a rheumatologist and had loads of blood tests. They all came back normal as did an MRI of my pelvis and lower back. Then in December the pins and needles came back but stayed permanently, mainly in my right foot, but occasionally in my left foot and hands. Then in February I began to experience some very strange pelvic pressure, pushing on my bladder and bowel. I was referred to a gynaecologist to see if I had had a prolapse, but everything was normal (but she did mention going to a Neurologist). The weird sensations continued. I then had another episode which started at the beginning of May (16), it all started with extreme fatigue and a return or the awful foot pain, so much so that I couldn't put weight on my foot. Also despite the warm weather I had one very cold foot that I had to warm up with a bath during the day or wear 3 socks (I've never had this problem before). I was finally referred to a Neurologist, but told that I would need to wait 6-8 weeks. As I couldn't walk and the painkillers (Cocodomol and Naproxen) didn't touch the pain I paid to see a Neurologist privately. He thought it was some sort of inflammation of the brain and referred me back to the NHS for an MRI and prescibed Pregabalin, which did initally stop the pins and needles and really helped the foot pain (they have since returned to a lesser degree so I have increased the dose). Then a week later the visual diturbances (blurry vision as if I'd looked at the sun in my left eye) I had been having got a lot worse and I had some pain as well. My balance was awful as well. I ended up seeing another neurologist in hospital and he suggested Optic Neuritis and I had to cancel my holiday and spend 3 days in hospital having IV steriods. At this point I also had a positive Romberg test. I had an urgent MRI ordered, which I had a week later. I am now feeling a bit better, but still have the background pins and needles and fatigue. Today I got the MRI result from the Neurologists secretary and apparently it is normal. I don't really know what to do now as I haven't been right for a long time. I was told I will now be seen in September, which seems an age away. I am tempted to go back to private neurologist (who is also NHS) as the other one specialises in strokes, but the private one has written over 100 papers on MS. I also haven't had an LP or any VEP tests. Any advice would be much appreciated, although I should feel pleased, I still feel in limbo land as have felt so awful.

Stumbler

@Stumbler

Hi @roow , I can understand why you've joined our community. Your symptoms do present in MS, but they also present in various other conditions too. This is why diagnosing MS is so difficult. It is not unknown to have a clear MRI and to have MS. But what MRI did you have, was it the brain or brain and spine? MS lesions can be caused down the spine too. For the moment, you just need to keep pressing for answers. The fact that your MRI is clear is not an answer. So, put your foot down (politely) and demand that answers are found. It would be wise to read your opening post above and extract a short, concise list of the symptoms you've experienced with dates. This will be useful to the Neuro, who needs to build up your clinical history. Good luck.

VanessaJ

@VanessaJ

Hi There I do know that plaques (lesions)found on an MRI can take years to show up. A lumbar puncture seems to be more reliable. Neurologists don't like to place a diagnosis of ms on people unless they have to -I was told 28 years ago that I don't have it.....then 12 years ago I was told I do! !Stumblers advice is they way forward -politely insist. I have one freezing foot too so I know how you feel, but honestly it won't be the end of the world if you do. Vanessa ☺

RooW

@RooW

Thanks for the great advice. It's so hard not being able to find out what's wrong, people probably think I'm really neurotic, but I know something isn't right. Stumbler I had a brain and cervical spine MRI with and without constrast. My eye still isn't right so I have been referred to a neuro ophthalmologist on Monday, so just want to rule out anything else. I have ruled out pernicious anaemia and blood test doesn't suggest Lupus.

Stumbler

@Stumbler

@roow , you know that there is something wrong with you, so be assertive in demanding a diagnosis of whatever it is. That's assertive, and polite. :wink:

Rudi

@Rudi

I have had very similar symptoms. The painful hands and foot and pins and needles. I also have had muscle spasms in my feet and my toes move all the time on their own. I had blurry vision in my right eye that lasted several hours and then went away. It comes and goes every few months. I had an MRI of the head, c-spine and spine and all were normal (no contrast). I also had an MRA. This all started in October 2015. I am having an EMG test tomorrow, but of course symptoms are not acting up at the moment. My primary doctor basically told me she has no idea what could be the problem and we will probably never know. Neurologist at least is taking the symptoms seriously and testing me, but takes months for appointments and when I finally have an appointment the symptoms aren't bad. I am very frustrated by this. I had a lot of blood work as well and all was normal including test for Lyme disease. Please post anything you find out!