Hello everyone,
I am feeling really confused at the moment and a little alone.
In 2012 I was very ill. I was off work for 9 months ( I was 50 years old then). I could barely walk and had severe numbness and nerve pain all over my body. I was referred to a neurologist and had the full spectrum of tests, including MRI, LP etc. All came up clear so they diagnosed me with fibromyalgia. Gradually the pain subsided although I could no longer work full time because of the fatigue.
Since then I have had some problems especially with my feet, severe pain when I walk for more than around 10 minutes.
But over the last 3 months again I have been ill. Firstly problems with my left arm causing numbness in my fingers and hand. I went to the doctors and he wants a neck MRI to check for MS because I have other complications, including bladder problems.
I was told the MRI should be within 2 weeks but it is now over 3 and I have heard nothing. I intend to go back to the doctors again on Monday because now I have more symptoms, numbness in my feet which has spread up to my knees now. Sometimes I am struggling to stand, especially after sitting for a while. Also I am getting a lot of headaches and pain behind my eyes, it’s disturbing. To be honest I am pretty scared, my brother had progressive MS, sadly he passed away several years ago but not before being completely bedridden for some time, he gradually deteriorated, memory, paralysis etc. Having seen this I am terrified it might be MS.
Another reason I am returning to see the doctor is because I spoke to another doctor at the same surgery (on phone) about my medication (I am on Pregabalin for the arm which is chronic) on Tuesday and when I asked her about the MRI she said the doctor I saw hadn’t requested one. What? So I am sitting her worried out of my mind waiting for an appointment and one isn’t coming?
I keep on wondering if it’s just the fibromyalgia but the symptoms are bad, could I have been misdiagnosed? Is it MS? Looks like more tests if the doctor pushes for it. To be honest I am just tired of it all and want to be better. I can’t remember the last time I slept all night and didn’t awake with pain. When I was ill in 2012 I had my husband to support me but sadly he died 18 months ago so I feel really alone this time.
Anyone else here diagnosed with fibromyalgia because tests ruled out anything else?
Was your original mri scan of the brain only?? I think a spinal mri is perfectly reasonable at this point if you’ve not had one already!
Hi Sylvia,
It sounds as if you’ve had a lot to cope with over the years and now you’re being given the run-around.
I think you should go back to your GP and tell him/her that’s it not good enough. Tell them you want some positive action or you’ll go and find a doctor who will.
And you have to mean it. If my GP was telling me one thing and then not following it through then I’d be off like a shot.
I have done that, more than once.
In the meantime, please let us know how you get on - whatever the outcome there’ll be people here who will understand what you’re going through.
Best wishes,
Anthony
Hi Sylvia
I actually have a different perspective on this. Why would a GP order an MRI? They aren’t usually capable of interpreting the results of an MRI. And a neck MRI (does he mean a cervical spine MRI?) wouldn’t necessarily on its own be sufficient to prove or disprove the presence of MS. I would expect a brain and spine MRI in your case. And for the results to be seen by someone suitably qualified to analyse them.
I would actually be asking for a referral to a neurologist. Only a neurologist can conduct a neurological examination, interpret an MRI and / or order other tests. Obviously, you’ve had a range of tests in the past to check for MS so it’s entirely likely that further MRIs would also be clear for MS, but there are other diagnoses that can have similar symptoms.
The fact that your brother had MS must make you worried that you also have MS, but it’s just as likely that you don’t. The chances of a sibling of a person with MS also having it, are higher than in the general population, but there is only a one in 37 chance of you also having it. And having had an LP, which you said was clear (I’m assuming it did not show Oligoclonal bands in the cerebrospinal fluid which are present in 80 to 95% of people with MS), it’s slightly less likely still.
So while I think you should be referred to a neurologist, I don’t think you should be quite as worried about it being MS as you sound. It is horrible to have watched a close family member be so disabled by MS and totally understandable that you’d never quite get that fear out of your head. And obviously it is still possible for you to not have it in 2012, but to have it now. So having it checked out is important.
I do hope you get the MRI your doctor suggested. But more than that, I hope you get the all clear from MS.
Sue
For over 20 years I’ve been trying to get a diagnosis and they say it’s fibromyalgia But I’m getting progressively worse.even talking to someone on the m.s helpline said it’s gone beyond the realms of fibromyalgia My report said no oliclonal bands and years ago that stated you didn’t have m.s but these days that isn’t necessarily.so. My neurologist said he would see me in due course
Hi there I hope you don’t mind me asking but what type of bladder problems are you experiencing ?
It varies,sometimes it just trickles out,sometimes I can sit there a while before I pass urine,sometimes I feel pressure in my bladder but don’t know if I’ve passed urine or not and sometimes I know I want to pass urine but by the time I get to the toilet I’ve already passed some
Thank you all for your comments and support. I went to the doctors today. Saw a different doctor, quite hard to see the same one at our surgery. Anyway the MRI was not requested which annoyed me somewhat as the arm pain is chronic. But this doctor said she will definitely request an MRI of the neck, so again I have to wait. In the meantime I have to cope as best as I can. I am so tired. The bladder problems are urgency and inability to hold stream, leaking. The doctor today thinks all my symptoms (lower leg and feet numbness, eye pain, bladder issues, severe fatigue, obviously the arm pain, loss of balance +more) are unrelated and said she would be surprised if it was MS. But she said before investigating other problems we will wait for the scan. At least they are going to do that. She feels referral to a neurologist is unnecessary at this time. So I wait now, I hope it’s not too long.