I hate you pain!

I have been diagnosed by 2 neurologists with migraine with aura. I have been getting strange feelings in my body ever since October. They include weakness and discomfort on the right side of my body. My pinky finger and toe always feel numb and i have this strange weak feeling up my arm and leg (kind of like growing pains) I wake up with sore muscles every day. I can't seem to concentrate. I have lost my appetite. But this headache now is the worst. It is on the back of my head and the whole front of my face all the way down to my neck feels numb. My cheeks and ears feel like they are burning. Is this normal? Does anyone experience this?

I am still not convinced this is all due to migraines. I mean why on earth does my toe feel numb??? My mri of head and neck us clean. I've done countless blood tests and all is fine. I'm doing a nerve exam this Thursday.

Am i crazy? I feel like either my head is gonna explode from this headache or im gonna choke to death cuz of this numbness and heavyness in my throat!!!


7 Replies

  • To rule it out get tested for Hughes Syndrome/APS, get your GP to run tests: hughes-syndrome.org/about-h...

    Best to get them do in a hospital so they do not hang about as they are a bit sensitive. Also get your Thyroid checked out as it can cause real problems with the Thyroid if you have this condition. Both are easily treatable. MaryF

  • Have you had your B12 and folate levels tested - B12 deficiency can cause neurological symptoms like those you mention as well as headaches. Unfortunately there isn't a good/clear cut test and lots of people are told their results are normal when actually they are in the grey area where significant numbers of people have strong clinical indicators. It also doesn't help that many GPs still perpetuate some 'myths' - its a disease of old ladies and it's anaemia - neither of which is true.

    A full list of symptoms can be found here


    If you haven't had B12 tested then ask your doctor to do so. If you have then please ask for your results - anything under 450 really needs further investigation - eg MMA (a waste product that builds up if B12 isn't being used properly. NICE protocol - assuming you are in UK - is to treat on basis of symptoms not on basis of test results.

    There is a PAS forum on health unlocked where you can find support and ask questions if this looks like a possibility.

    It's important that you try to do as much as you can to get a diagnosis rather than trying to supplement for yourself - particularly as a B12 deficiency generally occurs because something goes wrong with the delicate mechanisms by which most of our B12 is absorbed - so not something that can really be sorted by swallowing tablets - though it can help a bit as 1% of B12 is absorbed outside the normal process.

  • Totally agree with the above. I suffered from migraine all my life, got worse at some stage in my life. After GP tried to remedy this and was making things even worse with medication, I asked to be referred to neurologist. MRIScan was fine, found out that I had no feeling under my left foot up to my knee and when I mentioned that I had short spell of dizziness.etc ,the neurogist found out that my B12 was in the' grey ' area 225 where neurological symptoms can develope and this had happened with me. I was quickly put on B12 injections, first starting with 3 a week, then fortnightly and now stable with 1 a month. This has helped me enormously, feeling back in foot and leg, dizziness gone and headache back under control. Still suffer with migraine on odd days, but the pain is reduced and can cope with 1 N. extra 684mg and 2 paraceatamols to get me through the day. Find out what your triggers are, mine citrus fruits and a combination of irregular habits. Migraine is caused by an imbalance of all that goes on in your body, so as a sufferer you have to take control and try to keep the correct balance or you suffer the consequences for at least 12/24 hours. Success with it. It's certainly worth it.

  • Really glad that you managed to get treatment - just a bit curious as to what form of B12 you are getting - hydroxo or ???

    Most people in UK really struggle to get their doctors to listen to anything more than 3 months for maintenance shots of hydroxocobalamin (even when they have neuro symptoms).

  • Hydroxocobalamin I believe I get and not the cyanocobalamin which is the least acceptable one. I think myself that the methylcobalamin is the preferred one and works better with patients that show neurological problems, like in my case.

    My GP is used to administer B12 injections to his patients once in the three month as is the NHS guideline.

    I was advised to have the injection once a month by a neurologist( Polish/trained in Sweden) and when my GP suggested to put me back on his preferred once in 3 month, I asked to be referred back to her and ask if that was ok by her. Why send me to a specialist to ask for treatment and then ignore that advise and do as you please.

    I was not referred back and stayed on the monthly ones up till now. Be diplomatic and stand your ground, GP have a difficult job to do, especially now that there is an even tighter budget then before.

    Like I mentioned before I have benefitted from these injections and believe more people could do if GPs were better informed. A lot less costs then all these medications I had over the years just to manage the headache never mind reducing the frequencies and severity of them which is the case now.

  • Sounds like you have been really lucky with the neurologist.

    People seem to vary quite a lot in what form of B12 suits them - generally people with neuro problems find methyl deals with symptoms better but not always the case.

    I use a mixture of hydroxo (anxiety, depression and generally being a grumpy so and so without ... and think it's probably the hydroxo that does most for balance ...) and methyl (neurological - left foot mainly - no feeling and lots of pain without) - use a nasal spray for most of it as I seem to need a lot more than the NICE guidelines - think I'm on 2 months but only really go back to the GP to keep it on my record.

  • Sounds a lot like fibromyalgia to me! Good luck with any further tests. Patti

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