Un Dx, how often do you see Gp?

I have been having issues for 18 mths now. Gp is confused and seems genuinely concerned that I still do not have any answers, put as he says has referred me to relevant consultants and clinics, I am under Eye clinic, Nuero, Rheumo and Contiance clinic. So very little else he can do. I have had every blood test known to man, nerve conduction studies and a MRI of brain and neck. Both clear. I tend to only see Gp for results. I am unable to do the school run as can not say day to day if my eyesight or limbs will be up to driving, it’s 1/2 mile up hill so walking is defo out. Before MRI they said they were looking at MS, its in the family, but when it came back clear, they said it was not. Some days I need help to get dressed and suffer terrible fatique. Recently had a few bad weeks spent a lot of time in bed. I have been struggling to look after my kids, thank god they are not babies anymore. At last Nuero visit when I complained that I was struggling with everyday life and my cognitive issues were getting worse, never mind being able to work, it was suggested Gp refered me to a memory clinic and physio. Told if it was MS I would have more lower limb problems! I now have a blue badge and some days my walking is better than others. He sent me for an NMO/Devic blood test- negative, and said he would see me in 6 months unless something major happened. Gp did memory test and I passed, and said as my movement problems were not there all the time no point in sending me to physio! My husband says I should keep going back to Gp and make a nuisance of myself until they do something. But as lots of my symptoms are invisible will this help? Feel that my Gp has been supportive as helped me with blue badge etc. he thinks it is Early MS as had a similar patient to me before.

Hi, like you, all my tests came back normal;

4 MRIs, 2 LPs, 2 EMGs, a VEP and oodles of blood tests…they were useful to rule other things out though. This was over a 14 year period.

PPMS was suspected and then I got a 95% diagnosis of PPMS, due to clinical presentation.

My mobility deteriorated very quickly and I had (still do) spasticity and spasms. Bladder and bowels problems too.

Last year I was dx`d with spastic paraparesis/cause unknown. It could turn out to be genetic.

I saw neuros every 6 months. Now it`s annually.

I think you need to see a neuro every 6 months so they can monitor you. Obviously something is wrong.

Your GP sounds great, that`s lucky.

Dunno what else to suggest, sorry.

luv Pollx

All I can think to tell you is what my neuro told me when I saw him the other week…

While I was there, I took the opportunity to ask him about a limbolander I’ve been trying to help. I told him that this person’s scans were clear. He said, “It could still be MS.” I told him that this person’s LP was negative for unmatched oligoclonal bands (the result that supports an MS diagnosis). He said, “It could still be MS.” I told him that this person’s evoked potential tests were inconsistent with MS. He said, “It could still be MS.”

So, the moral of the story is that clear test results DO NOT rule out MS. However, there are not all that many neuros who will stick their neck out without at least MRI scan results that support an MS diagnosis. If you can be referred to one who has the confidence and experience to go against the test results where it is warranted, then you stand a chance of getting MS properly considered. It might not be MS of course, but I think, if I were you, I would be more willing to believe it from someone like this.

One thing. There is a small possibility that the MS that runs in your family is not actually MS. Did the people in your family with MS have MRI scans? (It is a relatively new thing remember.) If you do a bit of investigating and find out that they didn’t (or that they had scan results that were atypical of MS), then it might be worthwhile suggesting that there might be something genetic going on to your GP - perhaps you should be referred to someone who specialises in this?

Karen x

Being seen by different clinics may provide you with another crack at a diagnosis or a positive MRI. When my neuro dismissed my case for lack of positive tests (including negative brain and neck MRI), the eye clinic decided to order an occular MRI (focussed on the eyeballs) which was positive. (still waiting for a consultant to pass an opinion on what is described as a hyperintense area in the posterior aspect of the globe). I’m guessing that what was seen on the occular MRI but not the bigger brain scan was due to it being focussed on a much smaller area.

Some too old to have had MRI’s other was given a PPMS Dx on clear scan, this was then changed to RRMS not had another MRI since. Spoke to friend today who told me it took 8 years for MRI to show something. She thinks I should have a LP, as if its positive should help, although I have been told even if it was positive I would not get a firm Dx as I would not meet the McDonald creitra. Think I have 2 options. One- push for a second opinion and another scan inc spine on a stronger machine. Two- try and forget all about it and carry on the best I can, time will tell I might never have another ‘attack’ again or I might have some thing major in which case this should help lead to a Dx. Rung Gp for a repeat of my Amitramine today and he wants me to go in for a review. So shall ask him what he thinks my next step should be. Thanks for all your replies