Hi everyone. I have been lurking for a while and finally decided to ask for help/opinions. Bit of history: I’m 39 - started having symptoms three years ago: optic neuritis three times in same eye, also had vertigo episodes, and some personal symptoms. Referred by GP to Neuro. MRI on brain showed “three areas of damage” and told “might be” MS. Since then I have been going back every six months to Neuro, the last time at the beginning of February this year. As I had had another episode of optic neuritis just before Christmas, was told to have another MRI which I did last week, again on the head only, but the consultant at last appointment gave me the impression of not really being bothered and I felt like I was wasting their time. Two weeks after I last saw the consultant I woke up with numb/tingling feeling in fingers of left hand, as though I had slept on it. Tried to ignore but found that if I got stressed out I would get a burning sensation and sometimes pain in these fingertips. After two weeks of this I went to GP as, if nothing else, I felt it needed recording. GP said as MRI was booked, just see what that says. Didn’t do any tests on me at that point, not even blood pressure. The tingling/numbness in left hand is still happening after four weeks now. Yesterday I started having a tingling/electric shock sensation down my back when I tilt my head forward. I have experienced this several times before but brushed it off. Of course today I decided to google this expecting to find advice about trapped nerve, but found reference to something called Lhermitte’s sign, which again led me back to MS. It describes it as a common symptom of MS, because of lesions on the spinal cord. Up to this point I have only had MRIs on brain, should I now be going back to the GP again and asking for an MRI on spine? I am not due to see Neuro again until end of May. Does anyone else feel like they are being a nuisance when they go to the Gp/Neuro? I appreciate that they are overworked, but from my personal situation, I do not often go to my GP, have been to Neuro six/seven times now and each time see a different person, so have to go over the whole history (as though they do not look at notes). I have three young children, I have to work to support them and am getting to the point now that I just need an answer. If they decide it isn’t MS, I would like to know what it is so I can do something about it. Obviously I am worried that symptoms are increasing. Sorry that this post has been so long, I would appreciate any help/advice. Thanks
Hi Jane - probably not any answers for you. Except please don’t feel like you are being a nuisance. You are not you have genuine concerns which need investigating. You deserve answers. And it is what the Neuros/GPs are paid handsomely for - it is their job. In an ideal situation you should see the same neuro for continuity. I once was advised I would be seeing a different doctor in clinic. I advised that again for continuity I wanted to see the neuro. It was done - had to wait a bit longer but worth it. Sounds like you need a diagnosis. I am no expert on this. I was diagnosed on changes to my second MRI - cant remember whether it was head or spine. Numbness I’ve had in an arm for several days which I was told was a sensory relapse. Hope you get relief and answers soon but please don’t think of yourself as a nuisance because you definitely are not Hugs Min xx
Thanks Min, it’s good to know the support is out there. Everything is so confusing. Decided I will at least tell G.P. about the sensation in spine, then at least it is on record. Also decided I will try to question more when I see Neuro again, not be put off with “come back in six months”. If I dont get some kind of progress this time I might ask if I can be referred to a different hospital. Thanks again, Jane x
HI Jane and welcome
As far as I’m concerned, you should have had a follow up MRI ages before now and your GP’s and various neuros’ lack of care is woeful
If I were you, I would insist on seeing an MS specialist CONSULTANT neuro for a second opinion irrespective of what the brain MRI reveals. And if the new brain MRI isn’t enough to get a diagnosis, then I would start banging on desks until I got a spinal MRI too, if I were you. As you said yourself, L’Hermitte’s is a classic sign of a spinal lesion. Symptoms in the hands also suggest a cervical spinal lesion. So I would be astonished if there isn’t sufficient evidence for an MS diagnosis.
Time to get tough. Your GP has a duty of care. You are getting no support (have you been offered meds for your symptoms even?) and it is not acceptable. You need a referral to an MS specialist consultant neuro (use the “Near me” function on here to get a name if you need one, although I believe it isn’t completely up to date) and if your GP needs grounds you can state the following (very firmly if necessary!): the lack of continuity of care due to the number of different people you’ve seen, all of whom have been unfamiliar with your case; the McDonald diagnostic criteria for MS have been revised since your first MRI, but none of the people you’ve seen appear to have considered whether or not you might actually meet the latest criteria and therefore should have received a diagnosis; that you didn’t have a follow up MRI scan until recently (which you should have done, especially given the change in the McDonald criteria I would think); that you have no faith in the current neurology team.
While you’re there, ask for help with your hands if they are proving difficult. Something like amitriptyline, gabapentin or pregabalin might help a lot. It may help with your L’Hermitte’s too.
Unfortunately, it is the people who ask (loudly if necessary) who tend to get these days; people who wait for something to be offered often wait in vain. So, as I already said, it’s time to get tough. If you are not the kind of person to be firm with a GP or neuro, take someone with you for moral support - you can do it together!
Completely agree with Min and Karen. I am sorry you are having such a difficult time. ‘Polite but firm’ should be your motto here, I think. Alison x
I read your post and emphathised so much that I had to reply. I’m 35 and I’ve had a variety of symptoms, the worst of which are my balance and leg strength. I struggled for a year with a GP who I felt lost interest very quickly once my MRI was clear last June. I felt I was expected to make a sudden recovery and he actually seemed quite surprised I was still having difficulty walking when he told me my results. So after a bit of a melt-down in the new year following an episode where I couldn’t walk around my own house, I changed doctors. I insisted on going to the surgery right at that moment (and had to be a bit stern about the whole thing to even get an appointment) and once there I stayed until all of my symptoms were logged and I felt I was being taken seriously. The new GP was much better and after many tests to eliminate other things he suspects MS. So I’m back to the neurologist in a week or so, and hoping to get some answers soon. I felt I was being left to ‘get over it’ in my own time and at least now I feel that people are listening.
My daughter is six and like you I also have to work to support her. It’s been so difficult trying to explain to the people I work with/for what the problem is when I don’t really know myself. I hate being so unreliable. Some days I can cope being there and others I can’t. I’ve currently cut my full-time hours to two days a week but will have to make a decision soon as to whether I can continue or not.
Anyway, I hope you get some answers soon…it’s not nice feeling in limbo all the time, I know. Just wanted to you know you’re not alone in this.
If your symptoms are severe maybe it would be worth going to your casualty department. They may decide to admit you and would do the relevant MRIs etc. When I was diagnosed in 2005 my GP sent me to casualty as I had sudden loss of feeling in both legs where I couldn’t walk and drop foot. I also had loss of bladder and bowel control. Although I was in hospital for six weeks at least I had all the relevant MRIs, lumbar puncture and other tests which led to my diagnosis and didn’t have to wait for months. I know this might seem a bit drastic but the way things are at the moment desperate times call for desperate measures. Good luck and I hope you get some help and answers soon. Anne x.
Thank you all so much for your responses. It is a great comfort to know someone is there to listen. You have spurred me on and so I have telephoned my GP this morning, to be told they haven’t received results of MRI and told me to telephone Neuro. I did this and was told Consultant on a/l until 15th April, but they still haven’t had my results of MRI either. I told the secretary my latest symptom and that I would like an MRI on spine. Her response was she would leave a note for the consultant on his return and he will contact me if he wants to see me earlier than the end of May. So in short I haven’t progressed much but at least I am taking action. I have looked at the “near me” section as suggested by Karen, I appear to live in a bit of a gap area, with the nearest to me being approx 30 miles away (not my local hospital). I also looked on my hospital website and found the information for the consultant who saw me last. It says he joined the trust in October 2012 (explains why I haven’t seen him before!) and has a “special interest” in Parkinsons, MS and MRIs. Is this the same as being an MS Specialist? Another 2 neuro consultants are listed: one I have never seen (maybe next time ) and the other I have seen but it says his specialism is Epilepsy. To answer your question about meds Karen, no I haven’t been offered anything for symptoms apart from tablets to stop vertigo (they did nothing to help) and when I last saw the eye clinic with latest optic neuritis episode, they said they could give me steriods but they didn’t think it would improve anything so didn’t. I was discharged from eye clinic at this point, told that eye would probably not fully recover (it hasn’t) but they couldn’t do anything else to help so it was up to neuro. Have decided to try to enjoy the Easter break with my girls and then harrass if needs be when consultant returns on 15th. Thank you all again for the wonderful advice! Jane x
“Special interest” generally means specialist, so maybe this new guy doesn’t have the best of bedside manner but actually knows what he’s doing. He’s the only one to have sent you for a new MRI at least!
Do ask your GP about a med to help with your hands if you think you would benefit.