I was diagnosed with peripheral neuropathy and a hyperactive nervous system a few years ago. After many very odd symptoms that come and go and each episode leaving me weaker and with more ongoing symptoms; my doctor now wants me to go and have a brain and neck MRI. There is no talk of a dye though and I’ve read that when they test for MS, a dye is used?
Actually I’m more afraid this is Parkinson. It runs in our family or at least my grandfather had it and apparently his dad had the same symptoms. One of my symptoms is a sudden shuddering of my face. It lasts for less than a minute and I get no warning of it starting, though it does leave me with a deep throbbing headache. They aren’t sure if its seizures I’m having but I don’t think they are because I’m aware and awake. Is this an MS thing?
The neurologist says its not typical of Parkinson and my burning skin and other symptoms (gripping of the lower chest, numb lower legs, tingling in my extremities, itching constantly are pointers to other nervous disorders but didn’t say what. I think, looking though here, they are going to look for lesions (I could be wrong) but I need to know, is a straightforward MRI the right route to go down if they are looking for MS?
Also, will they insert my entire body into that claustrophobic machine or will it just be my head and neck? If its my entire body I think I need to get some diazepam!
Oh and one more question… sorry! I am having my MRI next Thursday morning and seeing the specialist next Friday afternoon. Is it likely that he will have the results of the MRI so quickly?
@Allthatjaz when I was in hospital last year with my first episode, I had the MRI on the Friday evening about 7pm and the Neurologist had the results on Saturday morning when they came round to see me. In my case they were able to get the results straight away, so I guess it’s possible your Neurologist will have your results when you see him.
On my first MRI I didn’t have the contrast dye, but did on the 2nd MRI about 4 months later.
I had the MRI on the brain and spine, but not sure if I went all the way into the tube, as I fell asleep on both occasions. I guess lying still, in a cold room with lots of noise is perfect conditions for my body to go to sleep.
Good luck with your MRI and the follow up appointment.
Thank you both and sorry its taken me so long to reply but I’ve been away. I got my dates muddled!! I had my MRI on Tuesday and I’m seeing the neurologist at 9am this morning. They have told me he will have the results. I took your advise Carol and got some Diazepam. They also gave me a blindfold earplugs and earmuffs and I was able to take myself off into my own space (a spaceship orbitting earth). I see what you mean about the cold Kedge; though it was stiflingly hot on Tuesday so I think they turned the cold air on full.
So I saw the consultant this morning and although she didn’t have the MRI report, she was able to look at it and there was nothing untoward to be found.
She looked through my notes and took a cursory glance at the symptoms I’d written out before sitting back in her chair, sighing and asking, “have you tried meditation?” She continued under the assumption that this was all stress related and there’s nothing more they can do. She finished by saying, “this is good news. You should go home and celebrate”. Instead I felt like crying.
I feel like I’ve just been abandoned but I do seriously have to ask myself if this could all be stress related. I know stress can do some very strange things to your body and the more one worries about these odd symptoms, the more stressed one becomes.
She is doing bloods for Lupus and a few other things but I think she’s only doing that because I told her I felt like she was thobbing me off.
She said the my doctor had made an appointment for me to see the urologist about my bladder urgency.
What really gets me down is, I’ve spent my entire adult life being a big wall climber. I’ve climbed all over the world and up until a couple of years ago, planning new and exciting climbs was all I dreamt about. Now I can’t even climb a 15 metre simple grade never mind a full day climbing a super long vertical. I’d always accepted I’d have to drop grades as I got older but I’ve gone from all to nothing and now have to accept I’ll probably never climb again.
So the symptoms continued on and off. Then in January my left eye started hurting when I moved my eye and my vision was slightly blurry. It only went on for a few days and I thought it was my contact lenses so stopped using them. The pain went but so did the nasal side peripheral vision in my left eye. I was sent to the acute eye clinic where they suspected optic neuritis. I had a visual field test which confirmed there was something wrong with my peripheral vision and I now await an MRI. What surprised me was, when the eye doctor started looking through my notes and the results of the MRI I had done in May 18 she told me they had found four lesions. My question is, are lesions common. Why wouldn’t the neurologist of told me they had found four lesions and instead to go off and meditate? I’m really confused now. What else don’t I know?!
You’ve had a bit of a crap year haven’t you. How horrible that you’ve spent all this time wondering if it’s stress!!
Stress can cause physical symptoms, but you’d have expected that lesions found last year at least have been mentioned.
MS lesions are typically what is known as ‘demyelinating’. If the lesions found last year were not demyelinating, then they weren’t MS lesions.
A lesion is a spot or a scar. As far as I understand it, you can have little lesions that aren’t relevant to any disease activity. So it’s possible that the neurologist didn’t mention them because it wasn’t relevant.
Or of course, that the neurologist was a bit negligent in not telling you about the lesions.
It seems that you need another referral to a neurologist (unless you’ve already been referred). They can then properly read the MRI, in conjunction with last years. That will tell them a lot. Having had one last year, at least the neurologist has something to compare with today.
Hopefully you’ll have the MRI and get some proper results very soon.
I have legions in my mri they said that I have white matter changes with demyelinanting disease. What ever that is lol but that was with my first mri. I have seen the doctor (neurologist) and he wants a second mri plus a lumber puncher with a blood test. I have had the LP but waiting for my mri appointment, the doctor has made an appointment with him in early April. But I think that you can get legions through old age wear and tear don’t quote me on that. You do have to have demyelinanting disease to start with anyway. Have you had a spinal tap or blood tests as there is no one test to find out you have MS May be the neurologist wants a second mri before giving a diagnosis. Kay
Thanks both, I haven’t had a lumber puncture and I haven’t had contrast MRI’s either.
My main concern has been the start of Parkinsons as it runs in my family.
Thanks for the info about demyelinating lesions Sue. I need to find out if that’s what they are.
I’m also thinking at this point about seeing a private specialist. I can’t afford another episode like this with my eyes and the lasting results of this last episode has really frightened me.
If you do decide to see a private neurologist, see if you can get copies of any / all MRIs done on the NHS. You can ask at the MRI unit, they should be able to provide you with copies on disc, although typically they charge anything from £10 to £25. At least then the new neurologist will be able to compare old and new.
Sorry I’ve taken so long to get back to you but we are just back from Thailand and to be honest, I didn’t want to think about any of this whilst away. I had another brain scan which was ordered by the optometrist and got the results last Friday. It shows white matter and a cluster of small swollen blood vessels. (angiitis was mentioned by the radiologist). Further tests were done on my eyes and apparently, even though they feel fine now, my peripheral vision hasn’t fully returned but my eyes aren’t actually damaged so it means its something in my brain. The optometrist is referring me to a neurologist and today I had a load of blood taken to check for inflammation. I’m dreading seeing this awful neurologist but this time I’m going to take my husband with me because he will prompt me to ask the right questions. Thanks for the info about getting MRI copies for a private consultation Ssssue.
There’s nothing to worry about seeing the neurologist, they will ask you lots of questions about your childhood what illnesses that you may had, medication that you take, do hand to eye coordination, test your balance and talk about your tests that you have had done, plus the symptoms that you have or have had.
It looks as if you have a good optometrist, it was my optometrist that put me forward for an MRI and then to see the neurologist. Which started my ball rolling. My journey is nearly over I have to see my neurologist in a years time.
So if you can don’t worry it’s not that bad. Good luck kay
