Hi today I had a second opinion. The neuro was quite polite but as with my last neuro I could tell he was getting fed up when I was trying to explain all that’s been going on as quickly as I could!! He reviewed my previous mris and stated that the fact they are clear rules out ms by 90%. My diagnosis has changed from psychosomatic to chronic pain syndrome, cause unknown as the brain and nervous system is so complex. He has referred me to the pain clinic. He has also said that if I wish I can have a spinal tap to completely rule out ms. He said that this would delay my referral to the pain clinic though. He was kind of stearing more toward me just going to the pain clinic which makes me think he is pretty convinced I don’t have ms. He does not think it is psychological, just something that can’t be explained. He has discharged me. 2 questions, who would go for the spinal tap just to rule things out? Also if the pain clinic suspect anything, do they advise ie a referral to perhaps a neuro or a rheumotologist? I’m concerned that I haven’t been given the blood tests that I hear people mention on here, would this be because both neuros haven’t found this necessary? Thanks for reading. Still feeling a bit in limbo so on a downer tonight x
I’m sorry to hear it love. It’s awful that you’re being passed from pillar to post, but it may be a good thing and get you a diagnosis? They might spot something? I hope someone who knows their stuff replies to you soon.big hugs xx
Thanks a lot Beverly, yeah all pretty frustrating x
I’m glad we have this forum to be honest. There are people on here who know their stuff. It’s quite reassuring to be able to talk to people so informed especially during the stressful times. Best of luck Hun xx
Hi Jojow,
You must be feeling so frustrated with all of this - hang in there. For what it’s worth, I think perhaps if you don’t go for the tap you’ll always be wondering, and that could add to stress and anxiety in the long run. I don’t think you should have been given an either/or type of decision to make on this: that seems unnecessarily obstructive - but it’s probably just a red tape thing. Ultimately, I think in your position I’d go for the tap and search youtube like mad for exercises and ideas to help with the pain until the referral to that clinic comes through.
Don’t know if that helps… but good luck with your decision - and don’t get pressured into any decision you’re not totally happy with. It’s your body.
cc x
It seems to me that, if a consultant gives his/her considered opinion, having done the main diagnostic tests (clinincal exam and MRI), one might a well accept it unless one has a better idea.
(I am not sure either what are these blood tests that people talk about. I certainly never had them.)
As for the LP, well, that is up to you, of course. Insisting on having one would for sure demonstrate that you are serious about believing that there is more to this than some vague, unexplained malaise. No one volunteers for an LP, any more than they volunteer for root canal work (‘No hypochondriacs in the dentist’s surgery,’ as a dentist once said to me when I was apologising for having come, and hoping that I wasn’t wasting his time.) But it is a serious, invasive and potentially problematical procedure: would I have one unless the doctor thought I needed to? Probably not.
If there is some serious underlying problem like MS, it will probabaly emerge in its uniquely eloquent way. If you feel that you have done enough pushing for now, and need a rest from it (and who could blame you?), you can be reassured by that. Particularly as the pain clinic referral might turn out to be useful and worthwhile. Worth a try, perhaps? It would be great if that actually brought you relief, and maybe it wouldn’t hurt (if you will excuse the expression…) to give it a go? Shows good faith, apart from anything else. In my experience, the docs do like it if you do your best to take their advice - and they’re quite often right!
Alison
Actually, Alison’s response is a lot more sensible than my first reaction. She’s right: if it is MS, it’ll make its presence known in time, and you could be getting some practical help in the meantime.
And this is why I like this forum: it makes me think!
cc x
Thanks for all your replies I am also grateful for this site. I think I will go for the spinal tap as it will play on my mind if not. Like you say Alison if it is ms it will show up some day. I just live with the fear that I will wake one day half paralysed and that’s how I would end up with a diagnosis but that may never happen so I should try not to think like that I keep saying that if any illness could have picked me I wish it was something more easy to diagnose properly but most people who visit here in limbo probably think the same. In anyone’s experience , if the pain clinic suspect anything would they be likely to recomend a referral? I just can’t be bothered to go for yet another opinion has I’ve had enough for the time being x
Hi Jojow
I’ve had the MRI, I’ve had the spinal tap (LP), I have lesions of my brain and spine, my results were positive for O bands from the LP.
I still only have a Likely MS diagnosis, my neuro wants me to “wait and see” if/ when things progress. Which is much to my disgust if I am honest. I feel the same way as you and fear the day when I wake up (again) with some sort of disability. I have no choice at the moment though, apart from waiting and seeing. My neuro won’t provide me with any treatment and keeps mentioning having to apply for funding for DMDs at every appoinment.
My LP wasnt a great experience and to be honest I wouldn’t of had one done, it was only that my neuro said that if the results came back positivie then I would get a DX. However this has not happened and I am still in limbo.
The other thing what has annoyed me about my limboland exsistance so far, is that I now have a 3 year driving licence, even though I don’t have a MS diagnosis.
Hi anon this must be very frustrating. My tests so far are all negative so if I had a lumbar puncture it may also prove negative, so ms may not even be what it is. In your case it sounds completely different and I bet you are proper frustrated. I just don’t know where to turn anymore and I may leave the lumbar puncture for now and wait and see what the pain clinic says first as perhaps I have something completely different I just don’t know. V frustrated and upset today. Hope they give you your dmds soon and you get the treatment you deserve xx
Hi Jo
Tell me about it, my tests are positive and I still get no assistance.
Just to add to this. When I went for the LP, the nurse spent more time talking to me about agreeing to give a sample of my spinal fluid for research purposes, which they are doing at the hospital than talking to me about the actual procedure. I do think my neuro wanted me to do the LP simply just to add to the research project.
The LP wasn’t that bad to be honest. I had to lie on my side with my knees slightly bent and it was holding that position which I found the hardest. The needle didn’t hurt, my back was numbed and it just feels like somebody pressing into your spine. To be honest, the procedure was just a major inconvinience. I would probably have it done if I were you, just so that that your neuro can tick the box.
One thing I have learn’t in the last 12 months, is that your mind and anxiety can play a massive part on how you feel on a daily basis. I have always been a really positive and confident person all my life except the last year. Untill one day, when my neuro told me that he suspected MS. I have learned now to simply not dwell on MS at all (as I dont feel like I have it, anyway). I look at what I can do (which is pretty much everything I could do before) now and focus on that.
If something happens, then I go to A&E, just like any other “normal” person.
Hi lol bet you were impressed regarding the spinal fluid sample. You are right on the not dwelling. I too have learnt not to dwell, I just start to get nervous a few days before appointments and get frustrated when I get home and for a few days after when I’m still at square one. For a few months of this year I had barely anything going on then bang nearly 5 weeks ago I was hit by the most severe lower back pain ever, can only describe as labour when I’m not dosed up. It also got my bladder, pelvic and hip area and I have bad pain in my legs accompanied by spasms. I have a supply of tablets so haven’t needed to go to a&e, part of me wishes now that I hadn’t had these tablets, then I would have had to go to a&e and I may have got to the root of my problems quicker. My diagnosis of chronic pain syndrome yesterday didn’t really need a 4 month wait to see a new neuro for as chronic pain is something I can defo diagnose myself with lol. In a couple if days I won’t be down in the dumps anymore, just be coping in limbo I hope x
Hello Jojow
My opinion for what it’s worth is to accept the referral to the pain clinic.
Did we chat on another link about you having a histiory of fracture…was it your hip? or am I mixing you up with someone else.
This is something you should discuss at the pain clinic. Sorry if I’ve mixed you up with someone else.
If things don’t improve for you then you can ask your gp to refer to a rheumatologist.
I personally wouldn’t put myself through a lumbar punture without good reason but that’s your decision of course.
Good luck
Noreen xx
I think the blood tests are the ones which would rule out the rheumatological causes like Lupus and Sjogrens. I have seronegative (negative blood test) Sjogrens, and so I have been looking to see if it could cause MS type symptoms, and it certainly could, as could lupus. So I would think that. Rheumatologist would be a good next step if pain clinic can’t help… Hope you are ok, Leah 
Noreen yeah that was me and I think you are absolutely right. I got a feeling my hip may have something to do with all of this. I had a long chat with a nurse at the brain and spine foundation and she too has said the same as you. I’m not going to put myself through the spinal tap just yet I’ve decided. Leah think those are the blood tests I’ve heard about. My mum has lupus only mild but she still has it, the neuro yesterday tried telling me my negative brain and spinal mris should rule this out which I now realise is a load of rubbish. Hopefully the pain clinic may refer me to a rheumy, I may also mention it to my doctor to see if they will refer me. Feeling much more positive this evening. It’s good having people to talk to both on line and on the phone, maybe I will start to get somewhere xxx
Hi Jojow,
an antinuclear antibody test can be taken from your blood which will identify if something autoimmune is going on. This type of test shows up whether diseases like MS, lupus, pernicious anaemia, or something else might be present. It doesn’t test for a specific disease or condition, but lets them know whether something is occurring, where the body is attacking itself. The neuro only ordered this for me once she had identified that nerve and muscle damage had occurred.
Astro x
Hi astro I have a feeling I may have had this test in a&e when this all first started but I may be wrong. Also it’s getting these neuros or doctors to actually do these things for you, Starts to become a drag but I will try and ask my gp next week if they can check if I’ve had one x