Hi everyone,
I’ve posted on here a couple of times through my journey in limboland and want to say a big thank you for those who responded with such measured and useful advice. After 7 months in the system, I have received a letter today saying my brain and spinal MRi were “essentially within normal limits, with no features to suggest any tendency to demyelination.” It then states that it does show minor degree of thoratic spondylosis (although I’m a bit young at 32) but this is unlikely to be relevant to my symptoms. I’m very relieved and happy that my scan is clear for MS, but not sure what to do now as I’m still having sensory symptoms.
Just to quickly recap my situation, I started having symptoms last summer with a bout of vertigo, double vision and numbness in my right hand little finger. I then had a huge migraine attack while on holiday and it was like having a stroke - visual disturbance in right eye (flashing lights and blind spots), numbness and tingling down right side leg, feet and arm/hand, numbness and tingling in face and trouble speaking (like my brain was malfunctioning and I could only say the word “eyebrow” over and over!). Since that episode, I have had very frequent bouts of tingling and buzzing in my right leg and foot (and, rarely, on my left side), tingling down my spine and back of head, numbness, tingling and small twitches around my mouth and right cheek - basically lots of weird sensory symptoms ongoing, but no motor ones.
My GP was very concerned and focused on it being MS (and my sister does have MS, so I’m at a slightly higher risk) but when I went to see the neurologist he (rightly) pointed out that these symptoms could be MS, but are more likely to be explained by other issues. He said in the follow up letter to that appointment, that if the MRi comes back clear for MS, it could be a migraine disorder and recommended that at couple of different medication options for migraines are considered if this transpired.
However, the letter I received today (a copy of the letter sent to my GP) is only about two sentences long, and doesn’t say what to do next, other than a disclaimer at the to follow up with my GP if I have any questions. I’m a bit puzzled that it doesn’t go into any detail on the thoractic spondylosis (even if it is minor) or the migraine disorder previously discussed.
I will book an appointment with my GP and see what happens, but I’m slightly confused as to whether I’m supposed to have a follow up with the neurologist (I’m guessing not) and if it is normal practice for the neurologist to just hand me back to the GP with no real answers? I’m mighty relieved it isn’t MS, but also very confused!
Good news, as you say, and I am glad for you. I would also share your puzzlement at the unsatisfactory state of things now. I know next to nothing about migraines, but did think that they fell within the specialist province of neurology too - don’t they? And if that’s what your trouble is, then you are getting humdingers of migraines that surely warrant proper specialist investigation.
Is there something stupid going on here about hospital specialists having targets for closing out referrals in double-quick time - the quickest way of achieving this being, of course, to say, ‘nope, she hasn’t got that, go away’ rather than (as they surely should do) moving on to the next line of enquiry to find out what is the matter? If so, then the poor GP could basically play ‘guess the ailment’ for ever, with multiple referrals saying, ‘is this what she’s got?’ before being told ‘nope, wrong again - better luck next time!’ Ye gods - surely things haven’t got quite that daft in the NHS!
But you are quite right - the GP is the next port of call. He/she will know how the land lies, and we don’t.
Good luck.
Alison
Hi Alison, thanks for your response.
Yes, I thought it would make sense to have a follow up with the neuro to talk at least to discuss the next steps re: migraines, especially as that specific example on holiday was a pretty rare variant of migraine. And if my ongoing sensory symptoms are related to a chronic migraine issue, I wouldn’t think that’s typical either.
I’m not sure if it is an issue with specialists being under timing issues. I had my scan 5 weeks’ ago, and the whole process has been fairly slow (although I don’t think I’m an outlier in this!). While my neurologist seemed to know his stuff, my consultation felt like it was on a timer, with a 2 minute physical examination (my GP did a more thorough check of my reflexes etc.!) and a rushed conversation about my symptoms in which I felt flustered and under pressure to hurry the damn up!
I’m in London and specialists, and particularly neurologists, are in high demand here and the hospitals are under a lot of strain. My particular hospital has been under special measures - I think the specialists are probably under pressure to get people off the books as soon as possible. But a two line letter is not particularly helpful for me or my GP, particularly as it is very vague as to what actually showed on the scan. As you say, I’m concerned it just becomes a fruitless guessing game for my GP!
I am also a bit puzzled as to how he could say I have thoractic (mid-spine) spondylosis as my scan was supposed to be brain and cervical spine only… I’m sure there is a sensible explanation but it is all a bit odd!
I’ll talk to the GP and see what he thinks first of all. Usually a 2 week wait to get an appointment with my GP, it seems like this process will never end - this whole thing is making me realise that London is not a great place to grow old!
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Hi Yazzo. I have literally just updated my post, I too am 33 and have similar symptoms as you do. I’m sat here a I type with a number tingling left cheek and blurred vision in my left eye and a while left numb side. He diagnosed me with migraine aura and spondylosis. I’ve booked a call from the Doc as my letter doesn’t say anything about seeing him again. I’ve retype the letter in my post xx