can anyone give me a diagnose of head pressure, pins and needles all over mainly right side, burning tongue syndrome and left thigh cold sen

can anyone give me a diagnose of head pressure, pins and needles all over mainly right side, burning tongue syndrome and left thigh cold sensation,

Those symptoms occurred after waking up at night with right side pins and needles and short term head and tongue squeezing, I did an MRI and MRA 4 days later and showed no bleed or stroke or clot or stenosis or anyerism

and did CTA a month later and was normal, as well as blood tests and CRP, ESR, ANA, ANCA, TSH, B12 ...everything is normal and negative.

Yet i am in a bad shape and always fatigued in bed and with all those scary symptoms

been on different medicines with no help, and the neurologist do not know what to do and can not diagnose

12 Replies

  • You can have some of these problems with a slow thyroid - it is insidious and can creep up on you, especially when you have other diseases already. Mary F x

  • Sorry to hear you are suffering so much. Has anyone checked for silent migraines? A lot of these symptoms fit. They can mimic a stroke. I get the head pressure which is not nice, I was told part of my vascular migraines.

  • I get pins and needles, nettle rash pain is it vestibular migraine

  • Yes , nothing no migraines

    I think i had a mini stroke or bleeding or small clot but the doctors do not agree on that, they say it would have showed on images

    I have burning tongue syndrom since that day, and burning mouth syndrome latest research say that it is a brain function thing and damage, thats why i suspect i had a stroke or bleeding

  • Much as we all want to help it would be irresponsible to offer a solid diagnosis based on what you have described.

    All of these symptoms are things with many of us have experienced, either singularly or in combination.

    But equally each of these might indicate something more serious or entirely out of our experience.

    Dont panic, and dont try to second guess the situation. Chances are it is all part of the fun of Lupus, but as we all have out own version of it, other peoples experiences is not always a good guide to your own.

    Let us know how you get on.

  • assuming it is , how do you solve it, what medicines are you one

    Do you take anything natural like natural herbs or vitamins , any suggestions

  • the only thing to suggest is go to you,r doctor or the consultant you see i had something sounding similar a few months ago soonest tackled soonest mended so doc or consultant or a&e hope alls well

  • I have recently been diagnosed with lupus and APS. I have exactly the same symptoms as you but am also having seizures. I have abnormalities on the brain MRI which are consistent with APS my consultant said. She has put me on mycophenolate and is reducing the steroids as the mycophenolate goes up as I have been on 40mg steroids for about 2 months due to a really bad joint flare All my bloods are positive - raised CPR, raised ESR,ANA, R, IGM,LA, and also Ro positive. Maybe it might be worth mentioning testing you for APS as symptoms sound consistent with this. Because of APS I unfortunately have to be on lifelomg warfarin but if caught early and no abnormalities on MRI just 75mg of aspirin thins the blood enough to solve any clotting problems. Good luck and I hoe you get sorted x

  • Neurologist are not helpful here and do not know what to do, i am just getting worst, i was reading the book of norton approach and it says to take some enzyme called serrapeptaze , i do not know about that, and omega 3 and stuff like that...

    Well my cta ct scans mra are clear, but my mri showed small while matter lesions maybe 2 of them only that are non specific , and can be caused by anything small and not major or by birth, i had 2 mris in a 5 months period and no changes and i will have one again in some months, but maybe it might be caused by APS or Lupus Vasculitis, God knows...

    I think if they give me steroid i will be better but they are not giving me anything , they gave me elavil that caused me more side effects and stopped it, and I did ana, anca, crp , esr, tsh all came normal and negative

    I am taking herbal stuff now like small dose of trumeric, alpha lipoic acid 100 mg daily low dose and vitamin c , multi vitamins thats it but nothing is helping and i am suffering and worst

    I can walk and move motor skills are good but i am always tired and i have stabbing pains in my leg muscles, throat and continuous tongue burning and tingiling, and head pressure, of course pins and needles more on the right side than the left

    I have no clue what to do, i just want steroid and things will be better,

    does anyone knows any herb that act like steroid or helpful

  • I was in hospital for 3 weeks and they did all tests which came back positive. Then they gave up on me as they didnt know what to do with me. Lupus UK have a list of specialists who are in hospitals around the UK. Because I wasnt getting anywhere with my rheumy I asked my GP to refer me to Freeman hospital at Newcastle. Because my symptoms were severe I got an urgent appointment within the week. It is almost a 4 hour drive from Cumbria but it was well worth it. I dont know where you are but it may be worth a referral. You need the APS test because this is what is causing my problems and they said it may also be vascular. Because you have white matter lesions this is consistent with APS.Dr Bridget Griffiths at Freeman has been fantastic and put me straight onto mycophenolate. My seizures are improving and shes hoping Ill be back to near normal (whatever that means) in a couple of months.The future looks brighter now (not too bright as I am light sensitive haha!!),whereas before it was fairly bleak. It sounds like youre panicking a bit and need to chill.Stress really is a BIG factor in exacerbating your symptoms and worrying will just make you more ill. P.S, Steroids did not work atall for me so youre probably best to not have them, they just wreck your body and the new thinking is steering away from high doses of steroids and onto the new biologic drugs which is good news for all lupies and APS sufferers (as long as the government will fund them) Unfortunately NICE are not so nice when they can put a price on peoples quality of life. Take care and I hope you feel better soon x

  • I have a lot of neuro symptoms...had them for years. Ask to be tested for pernicious anaemia or vitamin B12 deficiency as this can cause a lot of things like dizziness, pins and needles and also the sore tongue, sore's easily treated by vitamin B12 injections....I have this, but I also occasionally get the slightly swollen and pins and needles feelings in my head....which scares me and normally comes along with feeling unwell in general....I've put it down to either a form of migraine or angioedema (another condition I get) which can be brought on by allergies or food sensitivities....I think if you get this it causes a drop in blood pressure. Not nice :( Take care, I know how you're feeling right now, it is scary!

  • Steroids are useful if you've got inflammation, otherwise they won't help. If your symptoms are caused by nerve aggravation due to fibromyalgia, for example, steroids will not help. Which is why it is important to get the right diagnosis. I understand that your doctors are no help but you need to persevere - go back and say that regardless of the diagnosis or the lack of it, you still want to be treated until the symptoms disappear, so can they suggest a treatment, for example a trial steroid course do 2-3 weeks to see whether it improves the situation ( in which case that will indicate inflammation).

    Meanwhile I would take some vit d3 - I'm having similar symptoms to yours and I'm in the process of having the scans to check for CNS lupus or MS. But the neurologist suggested I take vit D3 in the meantime because research has shown that it can improve neuro symptoms.

    Good luck and don't give up - pester everyone until you get an answer, I am doing the same. Who can fight for us if not ourselves?

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