MS symptoms?

Of course Hypothyroidism is an auto immune disease as is MS. I have often wondered over several years whether my symptoms are also those of MS. They can often be closely linked to thyroid problems too so haven't taken too much notice. If I have got it, then its a taken a while to get worst.

My first symptom which alerted the GP to me being hypothyroid was a visual disturbance where I lost my vision for about half an hour. I have never really had that since but do get flashing lights in my vision field some of the time.

I have had incredible leg pains which I have also associated with hypothyroidism because they seemed to be less painful when I started on T3. But then again, is it just masking the symptoms. I believe all MS sufferers should take thyroid medication because it helps the symptoms. I get stiffness of my lower body sometimes, I am extremely heat sensitive but of course I also put that down to hot flashes.

Some times I go through lapses of symptoms, now is one such period. I always relate it to eating a load of rubbish and stress over Christmas time. Again, is it just that by keeping off gluten etc,which I normally do most of the time, alleviates MS lapses.

My latest symptoms, apart from fatigue are these sudden electric shock time flashes in various parts of my body. This has been a fairly recent occurence. During this also bad time, my legs feel like Im Douglas Bader (has anyone seen that film, a very old one so maybe not). I feel like my legs just don't belong to me.

If these symptoms were continual I would do more investigating but I could be bad one day and then for a few days, nothing. This latest bout of weakness, pain, electric flashes, fatigue and slight dizziness is getting me a bit worried.

Many thanks and Happy New Year to you all.

x

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  • Hi - I do understand about the Douglas Bader legs !! I have legs that I describe as those wooden puppets' legs - that just dangle from my pelvis - and need direction from a puppeteer that does not exist :-) Just me.

    In my case I think my spinal issues have been due to radical gut surgery in my 20's for gut TB - which means I do not have the part of the gut where most of the B12 is metabolised.

    So - Could it be B12 ? An excellent book by Sally Pachlok - by the same name.....

    B12 is involved in the myelin sheath that protects the nerves - and that is what MS is all about - the de-myelination of the nervous system. Please ensure your B12 is around the 1000 mark and do NOT accept normal from your GP when it is just in range.

    I had serious spinal surgery - sadly before I learnt of the effects of LOW B12......

  • Hello Marz

    When you say to make sure that the B12 should be around the 1000 mark, what range is that in please?

    I have had the electricity Sensation's described by the original poster, my B12 was recently tested at 311 ng/L (191-663ng/L) is that OK?

    Many thanks

    Jacqui

  • No it is not OK. Sally Pachlok is from the US and thinks the ranges are not good enough. In Japan for instance the range STARTS at 500 which could be why Alzheimers is lower there ( until the recent nuclear issues ) The ranges there go up to 1300.

    Docs do NOT receive training on vitamins at Medical School. You have to remember that Big Pharma cannot patent a vitamin so we have to be given lots of nasty drugs for all our symptoms instead !

    Any result under 500 can be the cause of neurological conditions - like - where are my car keys ? I have personal experience. I had my Terminal Ileum removed with TB over 40 years ago and was not told I would not be able to absorb B12. I learnt too late - around 2005 - and monitored my levels which only reached around the 300's. In 2007 I had surgery in Germany for so-called stenosis which I now think was/is de-myelination of the spinal cord due to B12 deficiency.

    My legs let me down with weakness - but I am able to practice yoga and teach 2/3 times a week - I started teaching at 65 :-)

    I retired to Crete with my hubby in 2004 - received my Hashimotos diagnosis here in 2005 and have made great progress and now in my 70th year !

    I think the ranges are universal and would certainly think the range you quote should be extended ....

    b12deficiency.info/signs-an...

    Happy to answer questions :-)

  • Thank you for taking the time to reply,

    I recently changed to anew Doctors practice because I was not happy where I was,

    On my first appointment with the new GP I was at first impressed because she was concerned about my electricity shock symptoms especially around my middle and thighs, so she asked for lots of things to be checked by blood test,

    I had a call to go back and see her to be told my vitamin D was low (15 nmol/L) >50 nmol/L

    So I was prescribed supplements when I asked what she thought had caused it to be so low, she just said lack of sunshine.

    She also said everything else was in range ?

    I don't feel so convinced but because I am a new patient with her I don't know what to do next, especially when you think my B12 isn't good enough either ??

    Jacqui

  • You do not have to believe me - the facts are out there and I have given you the link to read. Also your GP should go by the Guidelines and NOT the blood result.

    bcshguidelines.com/document...

    If you read the above link it will confirm what I have said - that symptoms should be considered and not just the blood results - especially when you have tingling and neurological things going on. B12 Deficiency is in fact a neurological condition and if neglected some damage cannot be repaired. As I explained about myself.

    What dose of VitD are you taking ? You need to be on at least 6000 IU's and that should follow loading doses. ViD is not just a vitamin and is a steroidal pre-hormone needed in almost every cell of the body and when low is linked to MS ( post earlier today on here about MS and D ) Low D is also linked to many cancers. I have Crohns so take 10,000IU's daily. It is fat soluble so must be taken with the main meal or good fats. Also take it with VitK2 - which I expect your GP forgot to tell you about....

    Yes the further way from the equator the more illnesses are linked to LOW VitD.....

    thefatemperor.com/blog/2014...

    A brilliant video - but loooooooong !

  • I would like to mention that when my last B12 test was done, by the NHS, the range came back much narrower than in the past, the top of the range was something like 550 and my level was just over and the notes said I was over the limit - there was also a note at the top of the sheet of results stating that the upper limit had been lowered to bring the range in line with the rest of Europe. I wrote a post about this at the time because there is a danger that if patients don't know this, they could be told by a GP that they are over range and stop supplementation which they actually still need to get up to the 1000 level.

  • Thanks for that - it certainly isn't the case here in Crete - where it is still around 800/900 - sorry don't have my results to hand. It is indeed a scandal - all this mal-treatment. I have read on the PAS forum whereby someone with PA has had their B12 injections stopped as they are over range. How can they be so ignorant when with PA, injections are for life....and when you are on treatment the results are skewed.

    It remains a struggle.... and we have to keep raising awareness.

  • Marz like you I have a connection to TB via a neck gland removal when I was a baby, but I dont know which one, I've been wondering more recently if it was a parathyroid since reading more about the thyroid gland, but not convinced whether I can see them or not on it, when I had a thyroid scan early August.

    My last blood test 14/12 says Vit B12 ...............772 pg/ml. (250-1100) ranges. It also shows a previous test in June, I'd missed that one! When result was

    569. So it has been or was low, but for how long I have no idea!

    I'm due back at doctor to collect a prescription for my next blood test due same date January. I haven't been prescribed Vit B12, should I be or buy some.

    As you know possibly, I've a few other conditions also, mainly my low blood platelet count. All ddocs I've seen this year have ruled out latent TB as a connection, I didn't need the Vac when I was a teenager at school - because I was already immune as the pre-vac test proved! My dad had shortly after ww2, again not many years before he died and it is named, as a contributory factor to to the hematemisis, on his death certificate.

    As you can imagine I'm very concerned at the similarities between him and me now. He was like a skeleton when I saw him only a few hours after he died at 6.40 am 1 was the hospital by midday same day. Sorry to get morbid here but it was almost 17 years ago now. I'm basically losing all my muscle and tissue under the skin, veins stand out very well, especially as I had vitiligo last year.

    I'm just trying to keep myself going and eating better is making no difference to continued weight loss. I think the monthly Vit D3 is helping, as did the ARKO Royal for the 1st month, it helped clear out I hope, some or most bad gut bacteria but I don't want it it to take any good bacteria with it also.

    The Arko has definitely helped with my brain though, much clearer of thought with symptoms that could have been Attributable to the BI or liver as a blood carrier, after all the meds I stopped taking Autumn 2014. All those bits and pieces are much improved.

    I'm going to ask the doctor to include on my next blood test, a test for TB, I've got the precise test I need written down and obviously I want a negative test, though isf yes it is treatable, but it would be something I can exclude or not, hopefully getting me nearer the root of all the problems!

  • SAMBS - I really am not sure how to advise you. Your B12 is not as bad as many - but supplementing will not do any harm as it is water soluble and anything you do not need will be excreted.

    As for the TB still being around - again I am not sure that is possible. But of course I appreciate your concerns. I have the opposite problem and I want to lose weight :-(

    Of course having the test will ensure you do not have to worry anymore if it is negative.

    Take good care - rest - and eat all the best food you can afford ! Oh and have a glass of wine now and again !

  • Hi Marz, thanks for your reply, It's just good to have the opportunity to ask someone else where TB is or has been a factor. You are the 1st I've seen mention it at all. As said trying to rule things out rather than in. Docs saying since last summer, no connection when they never tested me, I have all the blood tests here for 2 last years, as I'd forgotten all about the Tb gland, till late last summer, which is why I'd then asked for the thyroid scan, at which my doc was surprised I'd never had one done in Uk.

    I'm sorry you can't lose the weight, I think a year on a weetabix diet was what made it happen for me, I effectively didn't have cooking facilities in 2 rental properties. So I didn't lose weight by deliberate choice it happened and yes I do feel better for that side of things because it took the weight off my knee and hip joints.

    It's only since joining this group, I realised I'd never taken my Levo properly in the mornings and was tea drinking and eating breakfast within minutes of taking it, not leaving long enough before that.

    My weight and inches losses have been faster since since that. I Was 66kg just over a year ago, But down to 58kg on 8/12 so have lost 8 kg overall, although eating more and better during the year. I effectively have 2 meals of some sort a day and a couple of small (French size) glasses of rose wine, less alcohol content - weight is still going down but I have put a couple of inches back on, not liver but stomach area - alcohol?

    I think I like the advice in your last sentence best though - it put a smile on my face :-) oops - just had a pop up message saying my wind will die down in 20 hours - that sounds dodgy!

    ......no not me! The village I live in, it was my weather app :-))

    Well time to have my cuppa now, I'm well over my hour!

  • Sorry should have put. I originally started at 83 kg, the day I left my husband I weighed myself first and that was 3yrs ago this month. Also with the weight loss on Those joints the pain there when walking, went as well.

  • As you have an autoimmune disease, be aware that MS can often turn out to be Hughes Syndrome/APS. The tests are cheap and easy for a GP to do, although best to do them at hospital as the samples are time sensitive if left hanging around for collection.

    If any other members of your family have had strokes or heart attacks young or other autoimmune diseases and or a problem with miscarriage, definitely worth looking into, even just to rule it out:

    hughes-syndrome.org/about-h...

    hughes-syndrome.org/about-h...

    dailymail.co.uk/health/arti...

    hughes-syndrome.org/about-h...

    If you do pass any of the tests come back to me and I will help you further.

    MaryF

  • Have you seen an opthalmologist about the problems with your eyes?

    When you say that you lost your 'vision for about half an hour', how did that present? Did everything go black? Or was it just a disturbance in the middle of your field of vision? And, the flashing lights, where exactly are they? Could be it has nothing to do with your thyroid or MS.

  • The loss of vision was about 8 years ago and I was seen by an opthalmologist at the time so thats all okay. Thank you for your advice though. It was loss of vision through a sparkly gauze. The other lights are definitely related to hormones which will be at the side of eyes at certain times of the month.

  • I get that, too. Get it about once or twice a year :

    healthwise-everythinghealth...

    The flashes at the sides of the eyes are usually due to the retina shrinking and becoming detached.

  • What sort of flashes are those? Bright ones? I've been getting little flashes in my peripheral vision for the past 2 years. They are small and look dark to me, almost like a small animal running by. I keep getting startled by them. They get worse when my b12 is low. My opthalmologist said my retina "looked a little thin" when I pressed him but he said it was normal with age- I'm 31.

  • I Don't know what they're called - or rather, I probably did know, but have forgotten.

    The one's I'm talking about are very bright - as flashes usually are. I've never heard of a dark flash. Are you talking about floaters? They can move about, but flashes Don't move, they just appear and disappear.

  • Not floaters I don't think, just a sudden small dark streak of movement out of the corner of my eye. It's gone very quickly, that's why it startles me!

    It was getting better, but it's come back as have a bunch of other symptoms. Anyway I get my eyes checked this month.

  • Well, I hope you get good news, then! :)

  • Happy New Year No. 1. I presume you are aware that there is more than 1 condition that can cause or be related to autoimmunity. It depends which organ or gland is causing the problem in your body.

    Not every one comes down to the Thyroid, possibly why doctors will still only test TSH, because that blood test IS relative to the Thyroid only.

    hopefully an admin will correct me if I'm wrong, but it's the Free T3 and Free T4 that starts giving the answers to Thyroid "autoimmunity" . Whether hypo or hyper I don't know. It's what going on in your blood that counts relative to the specific test for the specific condition!

    The whole Adrenl

  • Hi Numberone1,

    Just to say I also had electric shocks every few minuets, among other things going on, but all went almost overnight once optimally medicated with Levothyroxine. (now on NDT)

    My B12 was at 379 in the grey area, I now supplement.

  • I have had these symptoms also with other symptoms especially the leg thing and electric shocks around the body ,i'm hypo,hasimoteos and have just been diagnosed with MS as well- get it checked if your concerned .I did have to fight for the brain scan .The worse thing for me is the exhaustion .

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