I’ve had another bout of symptoms recently which has prompted my to see my GP again soon. I’ve decided that I’d like to ask for a second opinion and would appreciate some advice on how to do that. I was diagnosed in January with Functional Neurological disorder after my MRI came back ‘within normal limits’. I went into the scanner knowing that if they found something, it would mean MS and was very surprised that they found nothing. I had one neurology appointment, one full head, cervical and thoracic MRI on a T1.5 , blood tests and nothing else, aside from a CFS/ME specialist OT assessment to get signed up for the treatment course. Of course I don’t want MS but I cannot help but feel that they’ve not looked hard enough. The FND diagnosis is basically ‘your nervous system is malfunctioning, we don’t know why and we can’t give you anything for it (but you can recover!) except to treat the chronic fatigue syndrome aspect’ - treatment which I am still waiting for. Perhaps I need to ask to see an MS specialist? Hopefully they could put my mind at rest one way or the other? I just know that my symptoms match MS, they have a relapsing/remitting pattern (I’ve been keeping a symptom diary for two years) and they get worse when I’m hot. Help?
Not sure. If it was me, I’d go to my GP and tell him I wanted to see another neurologist. Whatever, you need to know what’s going on. Big hugs xx
I paid for a private appointment to get a second opinion, I still needed a referral letter from my GP . It cost about £150. The only thing was it turned out to be the first Neurologist I saw who everybody said I did not due to a mix up of letters. He was different this time round and put me through all tests again back on the NHS. He still stood by his initial diagnosis of it being Migraines. I have found a Heamotoligist in an other hospital who is taking an interest as he has an interest in research. Just keep going.
I’m not in a position to go private, but I will keep going, thankyou Poppyseed. Has anyone else tried for a second opinion through the NHS?
Hey Reiki…am at a similar stage of my journey. GP being very obstructive so far, but am not giving up. Hopefully, yours will be more amenable. Just stick to your guns and refuse to be fobbed off. You know your own body. Good luck…let us know how you get on xxxxx
If I had had an MRI scan of brain and cervical and thoracic spine, and it hadn’t shown anything exciting, I would be inclined to keep my powder dry until something definitely startling and new happened. No point in flogging a dead horse (to add to the metaphorical muddle). You feeling unhappy about keeping on feeling poorly, and feeling a bit worse, and being dubious about whether your current dx tells the whole story, are perfectly understandable, but they don’t necessarily count for much in terms of cold, hard medical reasons for reopening the file. The onset of new, clearly-defined symptoms are more likely to do the trick. If your latest symptoms provide that, then go for it. If it’s all a bit vaguer than that, I might personally be inclined to wait and see for a bit. What does your GP suggest? Good luck, whatever you do.
Alison
Since my new symptoms are quite noteable and worrying - involuntary movements (head, limbs and pelvis) and significantly spread paresthesia (‘numb-ishness’), I’m determined to ask for further investigation. I see my GP next week. Thanks for your replies, Purpledot and Alison xx
Any more advice anyone? Has anyone been in a similar position? It’s a hard one - I don’t wish to come across as overly anxious - of course I’m worried but I’d just like them to cross all the T’s and dot all the I’s - but neither do I wish to encourage them to put everything down to the FND diagnosis. I just need to know if I have nerve damage or not. I see my GP on Monday.
Hi Reiki, I am not sure what advice to give you. I think Alison has probably given you good advice. I had lots of symptoms around 2010/11 and was told by the neuro that there was no medical explanation for my symptoms. It was a hard pill to swallow, cos I didn’t believe it for one minute, but what could I do? For a while I pushed and pushed against the system trying to force their hand, causing myself a lot of stress in the process. In the end, I gave up (this included being left with double vision nobody did anything about for 3 years). And just got on with life (mostly!). To be honest I am glad I did, it wasn’t easy at first, but I think those 3 years were better as a result of it. It forced me to put my energies into changing my work life to adapt to my health issues, which meant a change of career, which I love, but wouldn’t have done with a diagnosis of MS or similar. Eventually last December it showed it’s hand again, with ON. This has led me down a possible Dx path again, but this time, I am being taken more seriously because I now have signs that they can see. It’s still a frustrating process and based on My MRI results I don’t think I will be getting answers any time soon. So I think what I am trying to say is that I totally understand how you feel, and I know it feels better to be doing something, but it may be that what you need to do is wait it out a bit. Perhaps, try to get this second opinion, but also try and start to think “what if I don’t ever get any answers? What can I do to make my life better?” I hope that has helped not sure if it will, and I hope your doctor listens to you, and helps you get some answers… Leah 
Hi Reikiblossom
Maybe have a look at this link, published by the NHS - The NHS website - NHS
It is essentially a guide on how to ask for a second opinion within the NHS
HTH
PG xx
Lelole - thankyou. I’m just tired of waiting for help. It has been nearly two years and aside from the diagnosis process, the only things that have been tried are betahistamine for the dizziness (didn’t work, referred to neuro) laxative and being signed up for the CFS course which still hasn’t happened. The booklet I was given to tide me over is of limited use. I’ve been doing what I can for myself - self-treating with Reiki, talking to others in a similar position, paid for a few Shiatsu sessions (reduced some symptoms) but now I need to reassess things. Thankyou for your sympathetic reply x Pandagal, yes, I’d seen that. Thanks x
I am in pretty much the same situation as yourself. I have been struggling for nearly two years with classical ms symptoms, but no positive test results to back it up. I was referred to an ms specialist prior to my tests results coming back as my neuro at that point was so convinced that ms was the problem. The ms specialist was totally disinterested and downright rude as I didn’t fit into his clinic, how dare I be there at the ms clinic when I don’t even have it. When I pointed out I had three young children to get to school and some days couldn’t move for vertigo and what have you or just plain and simple fatigue, his answer was, ‘well I don’t know what’s up with you!’ I told him that that attitude wasn’t helpful and then he guessed by my language I was a nurse, changed his whole manner but by that time I was on my way out of the door. I saw him one last time and in his letter to my gp, he actually wrote that my symptoms were suggestive of ms but at this present time my test results did not back it up. I asked for a second opinion, based purely in his rudeness and his lack of wanting to look at what it might be. FND was suggested by an on call neuro consultant when I was admitted on time, but my new neuro dismissed it and now I am being treated for migraines. Yes I have a name, a name that I don’t think exactly fits. Even the gp doesn’t think it’s migraines. The neuro thinks the numb areas I have are mini auras, but I have never had auras that last nearly two years! Lol. He gp says he thinks it’s benign ms, but hey, he isn’t in a position to dx me. The neuro is treating me with medication that makes me feel worse than I did before. I could carry on looking for an ms dx, but I feel like the more I keep looking the more I am going to get labelled as neurotic. I don’t feel any better with the meds I am on, so I have made a decision to knock it on the head. Try and live with it exactly like I have been doing anyway, try and ignore it rather than have it at the forefront of my mind to document it in a diary to give to the neuro and just wait to see IF something major occurs. I have resigned myself to the fact that I could wait ten years and allow it to consume me but it’s already robbed me of two years. Yes health wise it’s still going to be there, but mentally I won’t let it, or at least I will give it a try. Easier said than done I know. You have to do what’s right for you, at this point in time I am fed up with drs, neuros and tablets that make me feel poorly, so for now this decision is right for me, but you have quite noticeable new symptoms. The problem is, and I have encountered this with another gp, is that because they have a dx of migraine in front of them, then that’s what it must be! So don’t be surprised if they aren’t helpful when you go next week and throw the FND dx back at you. I came out of the gp surgery the other day for my prescription of medication. I have had severe neuropathy in my hand since last November, which has caused pain and numbness and significant weakness which the neuro knew about but never investigated, and constant tinnitus, and was asked how my headaches were. I asked them, ‘what headaches?’ I don’t get headaches, I do get neuralgia in my right eye and jaw. But the shutters were up because my dx was migraine. If I do get a massive exacerbation at any point, I will just take myself to the hospital a&e department, instead of trying to get past the gatekeeper gp. I hope you get somewhere soon, not sure if my post has been helpful or not. I am just tired of the whole system now, but I just wish these people could walk a day in our shoes, perhaps they wouldn’t be so dismissive then!
Mrs Bellamy, you have my sympathies. I have a family history of migraine sufferers but until recently, aside from visual auras, light sensitivity and at worst, nausea and inability to speak properly, I hadn’t realised that they lump other symptoms such as parasthesias under the migraine umbrella. When I had split vision, after a difficult childbirth and almost immediate hysterectomy, they ruled out stroke and chalked it up to migraine. I will present my new symptoms (with associated mobility issues) and ask for another opinion, but maybe I’ll not mention ms unless asked. I might ask to make sure there’s no nerve damage, though. I have a young child to care for and just going about my daily routine, with less work and added rest,seems to be making me worse. Wish me luck for Monday I hope that you find some genuine help and improvement. Shiatsu and Reiki have helped me noticeably, would that I could afford weekly treatments!
Sometimes just getting through the day can feel like climbing a mountain. It’s no fun waking up and wishing it was bedtime lol. At least the school holidays are almost upon us, so no school run at ungodly hours of the morning, but then it’s the added responsibility and guilt of doing things with them whilst feeling pants. I think I am a bit cold turkey from not taking the meds today, so not feeling too good. Hopefully tomorrow I will be feeling better. Hope it goes well on Monday, let us know what they say. Mrs B x
When I first went to my new gp I never even mentioned ms I just told him symptoms ans was referred to a neurologist when I met with him after he examined me he suggested ms or artharitis in neck which he thinks sent that best not to mention ms or they think your bait crazy.
Oops thinks it’s not artharitis I meant damn auto complete. Did you have a MRI or LP maybe that can help with a dx. Good luck
Thanks Alysea, when I went to the neurologist she asked me if there was anything I was concerned that it might be, so I had to mention MS.
I’ve missed out on a family trip today as I’m so wobbly. I really don’t like this spreading numb feeling, as I keep thinking that I’ll trip over. I know I’m driving myself a bit bonkers but it is hard to ignore. I tend to tip suddenly over to one side as well. I’m not sure if it would be evident in a short appointment as it tends to happen after I’ve been walking a way, or when I’m more tired. I’m used to walking everywhere and this limitation is upsetting.
I feel for you my old gp put it down to weight gain. So I lost 3 stone no better. I changed gps as after a year I was struggling to walk using borrowed crutches as walking was so bad I can’t take my daughter to school cause of my walking family helps. I only leave house for gp and hospital appointments been like this a year as my old gp was of no help, my MRI showed inflammation waiting for vep and LP results. Wish I could do more but it’s a struggle lucky I still live at home good luck I hope you get a dx soon.
Well, I have a diagnosis of Functional Neurological Disorder, but I still suspect MS.
What makes you suspect it, you have walking or balance issues as for a year I didn’t suspect it even though I had loss of balance and difficulty walking it only sunk in when my neuro mentioned it. Family members still expect tests to come back clear I’ve accepted it but they think it’s something minor that can be fixed I wish I still blame the pill injection after I stopped it I became disabled 
But I hope things get better ill see what my specialist says he’s a ms specialist so I’m lucky he’s been quick with tests.