I have undiagnosed neurological symptoms and it has been recently suggested to me that I may have MS. I was diagnosed with ME in 2007 with severe fatigue but no other symptoms and improved almost fully within 2 years but subsequently relapsed at the end of 2009 with new symptoms - slurred speech, balance and coordination problems and difficulty walking. Whenever I get tired I often fall over or collapse and I find I have to keep my feet raised otherwise I fall off my chair. I feel it could be related to blood pressure regulation but I have had a lot of tests, none of which have shown any cause. I had an MRI of my brain and spine 18 months ago which showed one high signal white spot on the right frontal lobe of my brain but I’m told this is a normal ‘aging’ type spot and everybody gets them. However, the GP I saw recently said this can indicate MS and though I know this is the one of the things they were checking for previously it has never been brought up directly until now.
So I am a little confused, and mostly very frustrated, and wonder whether you can advise me on the best way forward. I want more than anything to get back to work and have recently taken on a part time position but unfortunately it has caused me to relapse and lose my job. I wonder whether it might be worth having an MRI redone at this point or some time in the future but I’m very reluctant to ask my GP for tests as I feel that I will be labelled as a hypochondriac! Any advise would be greatly received.
If your symptoms have improved so much, I am doubting your ME diagnosis, although it does sound like you have problems with orthostatic intolerance.
I would definitely agree with Karen that if this GP has brought up the subject of MS, they may be willing to listen to you and you should pursue this avenue of thinking.
It is worth pushing for another referral to a neurologist to see what is going on. They can send you for a lot of tests that your GP would probably not even think about (to rule out MS) and it would be awful if you continued to feel so poorly when it is something that might be treatable.
There are a few ME’ers on the forums hun so you are not alone in wanting some answers.
Thank you very much for your reply. Well this unfortunately isn’t possible because the place I came to work - where I saw the GP who said this - doesn’t have a regular GP and unfortunately this GP was only visiting and won’t be back again before I leave. I feel quite confused because his attitude and straight-forward manner was quite different from what I have previously experienced as I have found it very difficult up to now to get any direct implication of what it might be. I’m just not really sure how to approach my regular GP once I get back home about getting some more tests, or what sort of tests would be suitable in my situation. I tend to find they say they’ve already done an MRI and it didn’t show anything and send me away. But it doesn’t change that I am unable to be independent, very difficult for me, at 30 years of age, not to be able to work or do the things I love. Despite staying physically and mentally active regardless of how bad I’m feeling whatever it is just doesn’t seem to go away - I don’t even seem to be able to judge or predict how it will behave or what it will do next! Very frustrated!
I would recommend a very straightforward approach: tell the GP that you are having new symptoms (describe the main ones) and that you want to see a neurologist. If they say anything about not needing to because of the previous MRI, just tell them that you have had X “relapses” since then so you do not believe it can be up to date.
If the GP won’t listen or refuses to refer you, then you should get a new GP. It’s not their job to investigate neurological symptoms: a patient presenting with neurological symptoms more than once is supposed to be referred to a neuro according to NICE. Time to get assertive!
Well the symptoms I’m experiencing now are not new, only exacerbated by my present circumstances. I have seen three different neurologists, the last 18 months ago, who did the MRI and no-one since then. I had a lumbar puncture ('slightly elevated protein levels? what does that mean? nothing apparently…) and VEP (despite the fact my vision was so blurred I couldn’t see anything!) and have had a blood test for MG and had some cardiovascular investigations (frequent extra beats with an exceptionally wide range heart-beat, 38-186/minute but I’m told this is nothing to worry about ), none of which turned anything up. After all these tests finding nothing many of the specialists tell me it is in my mind, but I’m quite sure it isn’t. I feel I have been labelled with some kind of anxiety disorder and dismissed and I’m worried that if I go back to my GP asking for more tests this will only re-inforce their opinion that I’m ‘imagining’ it all. I frequently get mistaken for having MS, even in some cases by medical practitioners who haven’t seen my notes.
If your symptoms are triggered by stress and are always the same, then it does sound rather likely that they aren’t caused by a neurological disorder. That doesn’t mean that you can’t get help for them though. Have you asked?
Well I have attended CBT/occupational therapy in the past and had therapy at the Dr’s suggestion but am always told by the therapist(s) that I don’t need to be there, that clearly I have a physical condition which isn’t related to stress, and that all my thinking patterns and behavoir are not related to my illness. I’ve given it a lot of thought and time, but I honestly don’t think it’s the answer. The symptoms are not always the same but can be triggered by certain things: turning my head to the left causes my speech to become very slurred and after about ten seconds I faint. Likewise, if I sit with my feet not raised, or stand longer than 30 seconds, the same things happens. My speech always becomes slurred when walking/exercising and I’m completely intolerent to cardiovascular exercise, since any raise in blood pressure causes me to faint too. I’ve never fainted before I got these symptoms and now I spend half my time on the floor! The symptoms were caused by a virus they found to be Epstein Barr and the exacerbation in 2009 by another virus with high fever. In the first months after that exacerbation I couldn’t sit up at all for about three months. I get awful chest pains and shortness of breath sometimes when exercising and sharp prickling pains all over my body that wake me up from sleeping, not to mention the dead arms and difficulty moving my legs, particularly in the mornings. Now I do sound like a hypochondriac!
Yes I have seen a cardiologist and had mobile ECG monitor done recently but it didn’t turn anything up. I haven’t tried the meds you’re talking about or been offered them, but my GP did recently prescribe cinnarizine to try and help relieve some of the balance/coordination symptoms - it had an extremely bad effect and we had to call the emergency doctor. My speech was so slurred I couldn’t make myself understood and I wasn’t able to stand or walk at all, or raise my arms above my head. I developed a tremor on lifting things and when the Dr got me to follow his finger with my eyes I passed out.
Again, I am not a medic, but cinnarizine is an antihistamine and antihistamines can cause vasoconstriction and an increase in blood pressure.
Everything you’ve said points to blood pressure for me and I would bet that your reaction to the antihistamine is important info - there must be a consultant who can work it out!
I wonder if your GP could get you a 24 hour blood pressure cuff test?
Dear Butterfly - I haven’t read everyone’s responses but I have to say it does sound a wee bit suspicious that this might be MS and I would certainly see a neurologist (again). I really do sympathise with your situation it took me 4 years to get diagnosed and to be honest most GPs were awful. One even telling me this was NOT ms. I honestly thought I had some kind of mental health problem. I have a long and boring story but the main point is that I actually got diagnosed after my neuro reviewed my first MRI scan and agreed that the lesions were MS - arrghhh!!! oh and I also had high protein levels in my CSF which when I rang the MS society helpline they told me could be an inflammatory response (I was having a relapse at the time I think).
Sod the GPs - they can be so intimidating I know but I think you just know when something isn’t right and I promise once you know for sure it is such a weight off your mind. Good Luck x Do feel free to PM if I can help in anyway. (although Rizzo is amazing for advice on stuff like this).
ive just been diagnosed with ms after first going to my doctors in jan 2011. the doctors did blood tests and were convinced i had diabetes. i had three tests for diabetes and after the third came back negative the doctor told me that i was perfectly healthy. i found this hard to believe as i limped out of the surgery. after that i made my mind up to change doctors to the clinic that had just opened near my house. they immediatly referred me to a neurologist in jan 2012. he was convinced i had a trapped nerve but the mri showed spots on my brain and spine.i thought the time it took me to get a diagnoses was bad but reading on here i see that some people have gone alot longer. the system deffo needs improving.
Thanks so much again for all your support and responses, it’s great to have your advice. My situation is escalting fast and I am now looking for some advice on flying with undiagnosed symptoms. I am currently in east Iceland (I took on a job here, how mad am I?) thinking somehow my symptoms would miraculously disappear with a good distraction (how wrong I was!) and visited a GP to get a medical certificate for work…have planned a boat journey back to the UK next week. To cut a long story short he doesn’t think I’m well enough to travel and wants to fly me to Reykjavik immediately to be hospitalised (there is very little in the way of medical support here). However, I’m really concerned there may be a vascular/blood pressure component to my condition and I’m worried flying may have a seriously bad affect. I’ve had attacks like TIA in the past where my blood pressure went sky high for no apparent reason and my body won’t tolerate any raise in blood pressure at all. I feel like my brain is lacking in blood and oxygen and I fear the barometric pressure in the airplane will put me in a critical situation. I know there is suspected vascular component with MS but wondered what your advice would be in this situation? The GP says there shouldn’t be any risk with flying but if they don’t know what it is how can they know? My instinct tells me it’s a very bad idea, but I don’t want to pass up this opportunity, with somebody finally taking me seriously, to get a diagnosis…
ive had my blood pressure checked recently but it was alright and i recently flew to madrid from liverpool for a weekend and had no problem with it. the only problem i had was a need to urinate at the most inopurtune times leading me to have to jump off a bus in liverpool and bail out of a taxi in madrid. hmm, embarrasing the flying was no problem mind. in terms of diagnoses i was actually relieved to finally get diagnosed coz it meant that i could get treatment. keep at them.
There is no known vascular component to MS and there is no reason not to fly when one has MS, but I don’t know enough about flying and vascular / bp conditions to be able to advise on that. Best to ask your GP I would think.
