I am new to this so please forgive me if I go on a bit but I feel a bit in limbo and isolated.
I went to see a neurologist about six weeks ago - on clinical exam I was told that I had Benign Ms and that I was being referred to a colleague who specialises in MS. An MRI was ordered which I had three weeks ago. However, in the letter to my GP no diagnosis or referral to another neurologist was mentioned.
I went to see a neurologist initially as I was having MS symptoms that were getting worse and so I don’t understand why he diagnosed me as Benign MS. I haven’t been back to see him yet as he’s been on holiday but I have been told by someone that my MRI does not show any signs of MS. As regards the clinical history the consultant doesn’t seem to have taken the history correctly as the timing of my symptoms is incorrect. The clinical examination isn’t correct either as I definitely have a positive reflex problem in my foot as seen by another doctor and my partner who is also in the business.
I am concerned as I seem to be having a relapse but don’t know who to turn to for some proper help.
Thanks for listening and I’m really finding the forum helpful.
Perhaps there was a misunderstanding in the appointment or perhaps he made a mistake, but it sounds very much like the first neuro thought you might have benign MS and so was going to refer you to the MS expert. The fact that the letter had mistakes is unfortunately very common - in fact, a letter with everything correct is very rare! Diagnosing someone with benign MS is more worrying. Benign MS can only be diagnosed if a patient has been recovering very well from relapses for more than 10-15 years without any significant mobility issues. Unless you have that kind of history, the neuro should not have mentioned “benign” and may well not know a whole lot about MS(!).
If I were you, I would start again and ask my GP for a referral to an MS specialist (use the “Near me” function on here to find the name of a good one in your area). In the meantime, your GP may be able to help with some of your symptoms: you don’t need a diagnosis to be referred to neurophysio, for example.
One thing that’s certain these days: it’s those who ask (loudly if necessary!), who are more likely to get.
I’m afraid ‘benign MS’ is used by some in entirely the wrong context. ‘Benign MS’ is when a person has no or very little symptom worsening in at least 10 years. Mild MS is nearer the point but did the Neurologist make this diagnosis just on a clinic exam or the MRI results also?
The MRI is crucial and I recommend you purchase a copy that they must supply under the freedom of information act.
The consultant did make the diagnosis of Benign MS on clinical history (albeit incorrect) and clinical examination only. My husband was also there and he can recall it too. As I mentioned the MRI as far as I am aware is clear. I don’t think he has taken on board my ongoing and worsening episodes. It’s a difficult one as both my husband and myself are in the medical field and asking to see another neuro in the same hospital seems a bit unprofessional. I know very little about MS never having worked in that area so it’s brill getting opinions from you all. I am thinking about having a private consultation elsewhere as my symptoms are worsening and worrying. I have had previous investigations for other possible illnesses and they have been ruled out.
Is it possible to have a normal MRI but still be diagnosed with MS ?
Yes, it’s possible to have MS but have a clear MRI. It’s not common though - the percentage usually quoted is 10%, but my guess is that that is out of date because of all the improvements in scanning techniques. Whatever the %, it’s definitely possible.
One thing: there is a higher number of MSers who only have lesions in their spinal cord so you should push for a spinal scan if you haven’t already had one. (Unfortunately, the spinal cord is hard to scan and lesions are missed there even easier than in the brain, but you really should exhaust all the tests if possible.)
As far as getting a second opinion goes, you can go to another hospital easily enough on the NHS or go privately. A private consultation is anything from £120-200, plus tests. I would be tempted to simply get my GP to refer me to the MS specialist that the first neuro was supposed to refer me to. That way you can claim a misunderstanding if you need to smooth things over at work (“Oh! I thought I was supposed to arrange the appointment. Sorry.”). Most MS specialists have private practices too, so you could also go that route (and another explanation: “Thank you so much for the name. I decided to go privately because the waiting times are so horrendous.”).
I wouldn’t be too concerned about the first neuro anyway. It doesn’t sound like falling out with him would be much of a loss!
Thanks for the info. I have looked on the website and got some names of other neurologists who specialise in MS and we are going to try and see one of them - either privately or on the NHS whichever is quickest.
We had a phone converation with the private neuro I was hoping to see and has suggested that it would be a good idea to ask my nhs neuro for a spinal MRI in the first instance to check for anything there. I am in the process of writing to him and hopefully he will agree. It seems a pain to have to do all the chasing to ask for further investigations rather than the neuro requesting it. Hopefully I will get the scan done and then be referred to the ‘specialist ms neuro’ as he initially said he would do, if not at least I got the option of going privately. The NHS consultant in all fairness did seem reasonable at the first appointment.
My GP is also going to do a neurological clinical exam so that the abnormalities I mentioned in my first post will be documented and confirmed by another clinician.
Will keep you posted and thanks so much again xxxx
Been to see my GP who carried out a new clinical neuro examination and confirmed the abnormalities that the consultant recorded as normal last time. The GP is also giving me a letter confirming this so that I can take it with me for my follow up with neuro next week. I’m relieved that it’s not ’ all in my head ’ It’s so difficult when me and my partner are in the medical profession and we know when something is not right but awkward to challenge. At least I have a supportive GP who understands my problem and is willing to help out.
My next step is to get my neuro to arrange a spinal MRI and refer me to an MS specialist and an MS nurse hopefully. I have been having a relapse of my symptoms lately which is worrying so hopefully my consultant will do a quick referral. I think an appointment with the continence adviser would be good idea as well.
As regards neurophysio you suggested Karen I’m on the case for that too so thanks so much for the advice. All the advice I have from yourselves is a big help and just by sharing my problems with the forum is making me feel less isolated already. So BIG THANK YOU !!!