Beginning to worry

New diagnosis and before diagnosis
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Oh dear … long first post! Sorry :sweat_smile:

My GP referred me for a neurology appointment in April, my appointment came back for just before Christmas - so still a little wait yet. I’ve been a bit clueless all year to be honest and just beginning to worry myself about things now.

When my doctor referred me, it was because I’d spoken to him about some numbness I’d been experiencing for the past 6 months or so across the left side of my face. Feels a bit like the sensation after being to the dentist having had injections, only all over the one side, even in my eyelid, ear, neck, nose, and cheek. At first it would be there for about half an hour or so, but then I noticed it would last longer, sometimes hours, and now a year on it’s really there almost all day to varying degrees.

I know it sounds weird that I wasn’t all that concerned but I had thought at first the numbness was perhaps something to do with migraines, as I’ve had these for 34 years. My migraines have become more frequent and severe the past 5 years (I’m 45). And thought perhaps it was a new symptom, maybe a different sort of aura. I’ve often had a slight numbness/tingling in the face from the severe head pain. Although this new numbness has been completely different and present without any head pain or other migraine symptoms.

I take preventative medication for migraine and had a review appointment with my GP this week. I mentioned that my facial numbness was really there most days now and that I can sometimes feel it on my right cheek too. It makes my left eyelid feel heavy although it doesn’t appear any different. I asked if it was perhaps a migraine symptom or was it to do with trapped nerves from a bad back or something like that, and my GP said that he wished that he could refer me directly for an MRI but that we have to wait and go down the consultant route, and had I heard of MS.

I don’t think I really took in very much on the phone after that point. My doctor is very lovely and I’m sure he explained things on the phone perfectly, I just don’t think I quite took in what he said after he spoke about the coatings of the nerves and wirings. I have of course had a good look at the information on this website to get an understanding, but I’m just wondering if there is anything I should try and do whilst I wait for the appointment as it’s still a number of weeks away? I’m beginning to worry and feel a bit anxious.

I’m glad my GP didn’t mention MS back in April when he’d originally referred me, as 8 weeks feels long enough. And even then, I don’t know how long the wait will be for an MRI or even if the consultant will refer me for any tests. What experience do people usually have with these sort of waiting times once you see a consultant on the NHS or is this impossible to say?

I’ve previously seen the neurologist regarding numbness in my left leg that began about 3 years ago. At that point I was referred by my GP because of this and my migraine attacks which had become much worse. The numbness in my leg is constant, although the sensation varies from a creeping feeling, to feeling like a tight band and is typically from the knee to the ankle. The consultant said that it is sciatica (I do occasionally have a stiff lower back), although my lower leg numbness is present 24/7.

Other symptoms that I’m now a bit concerned about is that I frequently find it very difficult to find the right words, or I get lost in the middle of a sentence in a meeting at work and forget where I was going with the point I was making (very embarrassing in a zoom meeting full of strangers). A few times lately I’ve felt as though my head has risen up out of my body (almost like a vertigo, dizziness) even though I’m sat still. I feel like I have to pace myself and not do too much in a day, and if I don’t I’m shattered or I’ll end up with a migraine. Some days I have a frequent urge to pee (although I really don’t need to go). I put a lot of this down to migraines (or stages of migraine) which I get very frequently, but now I’m worried that these and in fact the migraines themselves might be symptoms of something else.

Also, maybe my leg numbness might not be sciatica. I wasn’t given any scan, etc. by the consultant previously other than a check of my reflexes and a check to see if my limb showed any particular sign of weakness by pulling and pushing against his hand. I’m a bit worried about being fobbed off and being told that I’m imagining things.

I think I’m actually starting to feel a bit scared which is sound silly when I think about it as I’m a grown woman of 45 with a husband, two kids, two dogs, one cat and a full-time job … so I’m probably capable of dealing with whatever is happening / going to happen. But any advice or wise words from people who’ve been there and have got the t-shirt would be very much appreciated :slight_smile:

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Sounds like you’re talking yourself into an MS diagnosis but that could be because it may be MS…

Dealing with NHS can often be about he/she who shouts loudest. We don’t do diagnoses on here but you should be demanding an urgent head & full spine MRI with those symptoms, to propel you into the system ASAP. ASAP may still mean months.

I was misdiagnosed for a decade - my leg numbness & back pain was thought to be spinal stenosis so it never occurred to me it was MS and I laboured under the misapprehension that I had an operable condition… On it’s own, it would be easy to explain away the leg/back stuff but if you’re having cognitive issues and migraines AS WELL, GP needs to wake up to possibilities. Do it NOW and demand. If they fob you off, use the N-word. Negligence. They cannot possibly ignore your formal request if subsequently turns out to be the correct diagnosis.

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Diagnosing neurological things can involve a careful taking of history and an expert joining up of dots. It does sound as though your GP is joining some dots and has a hunch, although hunches, based on howsoever much experience, aren’t always right, as you GP would be the first to say, I’m sure, and of course what you need are scans and other tests and a hospital specialist opinion. It can be a long road to finding out what ails. When I had my first problems, work’s health insurance covered the initial neurologist appt and MRI and I then got transferred to his NHS list for the rest. If I had paid for it myself, it would have been worth every penny. If that is an option for you, it is worth considering.

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Thanks for your reply! My consultant appointment with the NHS is in just over 8 weeks. I’ve looked up their details and they are general neurology rather that an MS specialist. Should I be trying to look for a specialist MS consultant? I have a little of savings for an emergency but not much, this feels like that sort of situation though where I don’t want to be messing around and I could pay for an initial consultation and get things underway. Worried now that I’ve sat around waiting since April just thinking it might be a new migraine symptom - I still hope that’s what this all is to be honest as although I hate my migraine I’ve lived with them for 34 years and can mostly cope with them. Thanks again for your advice.

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Thanks for your advice it’s really appreciated, I’m pretty hopeless at putting myself at the front of the queue in anything really and tend to just put up with stuff - hence not even mentioning the face numbness for 6 months to my GP in the first place and only as part of an appointment about migraine medication. I’ve just been linking everything to migraines which are pretty complex up to this point. It’s just come as a bit of a shock that I should perhaps be considering it could be something else like MS. I’m sorry to hear that your diagnosis took 10 years - clearly it’s a very complicated condition and situation you’ve gone through. Thanks agai :slightly_smiling_face:

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Your hospital’s website should tell you who the local MS specialist is and a bit of googling will reveal whether and where s/he sees people privately. But you don’t know that it is an MS specialist you need, of course. May I suggest you seek advice from your GP on how to proceed and whether it makes sense to try to speed things up? They understand the local scene and they know you.

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As Alison says, find out who the MS specialists are within the Neurology team. Normal procedure for a GP is to fire the consult request up to Neuro and let them decide / distribute the case. By default, they are likely to put you in front of a general Neuro to make the MS diagnosis and only then get a consult with the soecialist who will write the detailed report. Each appointment could take 3 months, so being prescriptive, you could goad/ challenge your GP to make a more detailed report and perhaps direct it to the MS Specialist if he/she has confidence/ experience in the field. Likewise. challenge the GP to order the MRI, though there is evidence to suggest that in some Trusts, Neurology control/ block access to MRI use except if instigated by them directly. Ask your GP what happens in your area.

As regards going private, I asked my MS Nurses (I’m pushing for more investigation currently) and they said it may not save any time as being private, they don’t have full access to the results and all roads lead back to their team for actual treatment / meds. I don’t actually know if I was being fobbed off again or if this is a genuine procedural issue.

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mine was he is ace been with me since 2006 and got me diagnsoed. the 2 so called experts in MS told me i had ME and the other one said FND. cost me money too for that.

I think it is fine for general neurology to start with, lets face it you dont know its MS. 8 weeks is nothing to wait. BUT years ago it was like 8 months, so i paid for first consultation. If you can afford it I would see if this neurologist does a private clinic and do it that way, the best money i ever spent.

besides waiting for a specialsit MS neuro would be even longer, as like the MS nurse they are rarer then hens teeth lol. x

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Yes, I’m sure these 8 weeks will fly past! Its always Friday again before I know it :sweat_smile:It’s been 6 months since my gp referred me so far, and I wasn’t worried about the wait when I thought I was dealing with a new migraine symptom as I thought we’d just be taking a look at what other meds we could try that might suit better. I’m just having a bit of a stress about it and need to relax and just wait and see :relieved: thanks for your advice :+1:

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Hello

I don’t necessarily agree that you need an MS specialist at this point. As Alison and CC have said, you have no idea what’s been causing your symptoms. Your GP spoke to you on the phone this week (was it originally a phone or a face 2 face appointment?), without even having a GP do a physical examination, there’s really no telling what’s wrong.

Also, as has also been said, 8 weeks these days is a pretty short wait. To restart the process and ask for an MS referral could take much longer. And possibly be the wrong type of ‘ologist anyway.

As has also been mentioned, you could go private for an initial consultation. But the problem with doing that isn’t the cost of the neurologists appointment, it’s the huge cost of the tests. A basic head MRI, without contrast or any part of your spine, will cost several hundred pounds. Other tests, more hundreds.

Yes, you could see a neurologist privately and then (hopefully) get transferred to their NHS list. That is sometimes a brilliant way of speeding things up. But until you’ve seen the general neurologist, you don’t really know what is the right specialism.

What I think might be the best route is to plan on seeing the neurologist to whom you’ve already be referred at the December appointment. Take with you some notes of what symptoms have happened to you and when. This should include any symptoms that have improved or entirely vanished, including rough dates.

Once the neurologist has considered your history and (again hopefully) conducted a physical exam, s/he should have some idea what they/you should be looking at. They may well refer you for tests, like MRI and maybe lumbar puncture. You could also ask them whether you should be referred to a specialist neurologist. If so, ask for a name. That’s the point at which you’ll have an idea of the waiting list and may need some strategies of how to speed things up.

Best of luck with it. I hope it’s not MS, but regardless of the ultimate diagnosis, I do hope it doesn’t take a long time to get some answers.

Sue

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Thanks Sue :slightly_smiling_face: all of my regular gp appointments have been face to face except for this latest one. My daughter has covid so I didn’t want to risk anything and changed my go appointment to a telephone catch up to review my medication for migraine, as I’m trying out a different type of tablet since the last ones stopped being effective. The wait for the consultant so far has been 6 months so far, and it’s now just 8 weeks to go - but it’s only at this point that my gp has mentioned MS. I’d just assumed that the referral was like my last neurologist referral 3 years ago which was migraine related (& also about my numb leg).

I definitely don’t want to start a whole waiting process all over again. I think you’re right that I just need to sit tight and see the general consultant. I’m a bit worried that the numbness in my face has become worse and I’ve had it for over 12 months - it could be anything I suppose??? Thanks for your advice. I should probably stop worrying as it can’t help :sweat_smile:

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