So worried its als

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I have previously posted on the anxiety forum, but i dont see what help thats giving as i dont think this is anxiety anymore.

I have been to the doctors and a neurologist about a health fear i had which had gone by the time i had my appointment woth the neuro, but my symptoms now point towards mnd. I have a dent in my left calf which im pretty sure was never there before, twitching which range from fine to intense in my left leg and toes (however these are also in other parts of my body but i feel them the most in my left leg) and a constant ache/cramp like feeling in the same leg..i did have a weird feeling in my arm but now that has gone die to not thinking about it. But my leg symptoms will not go away whatever i do. This really worries me as i am only 16. The neurologist checked me over (for a brain tumour) but also did strength and reflexes and it was fine which another doctors has done when i had a trip to emergency care due to panicking. She has sent me for an mri for the 23rd jan to "reassure" me that nothing is wrong.

I am positive i have a neurological problem, anyone advise or help me?

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16 Replies

  • Posted

    Hi Emily,

    Firstly, Amyotrophic Lateral Sclerosis would come under a Consultant Neurologist, I hope you don't not have Motor neurone disease and is a rare neurological condition, but one that that causes the degeneration of the muscles and both of these disorders are Neurological Disorders. aches and cramps sounds like muscular disorders which does point to MND, and being so young I would not wish this upon you at all.

    Do this, go back to your Doctors and state that you want a second opinion on what is wrong with you. Even after you get the results back from the 23rd January. It is better to be safe than sorry, and misdiagnosing disorders does go on a lot. I know from experience that second opinions are worth their wait in gold. Firstly, I was diagnosed with an infection that went on for 6 weeks, until I had enough and asked for a second opinion from the hospital. It was a good job I did, they had been giving me anti-biotics for cancer!!! Within 3 days iI was in Hospital having it removed.

    Never rely on just on GP or Doctor, they are not specialists. If you don't get anywhere let me know and I will put you in contact with a well known Consultant Neurologíst so you can ask direct questions via email, or ny checking his website which is a wealth of content.

    Regards,

    Les.

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  • Posted

    Also ask for a vitamin b12 test to rule out pernicious anaemia/b12 deficiency
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    • Posted

      Hi Heather  can I ask how are you getting on with your B12  levels.  Four months ago I developed constant pins and needles in my toes on my left foot which has spread to underneath of foot and I get fluttering feeling up left calf. Its been constant but worse in past 3 weeks. When I wear flat shoes I get horrible prickling in arch of left foot and have to wear tight lace up shoes - am guessing muscles struggling as heels easier to walk in and I have a vague feeling or having to lift my left foot more when I walk. Had MRI of back thorax no pinched nerve  brain scan  all bloodwork and next week am having MRIs and brain scan re-done and a check on spinal fluids. No Neuropathy or MS. I am Vegan (although take supplements and fortified foods pretty regularly)  and was looking at my blood results done back in September showing B12 at 282. Also thyroid at very low end. Have read hypo thyroid can lead to low B12.  Am due to have B12 injection tomorrow which I hope I dont react to (seem to have allergic reaction to a number of drugs - blurred vision dizzyness etc). Taken a couple of B12 supplements ug and got a few red spots and slight itchy throat (which I am going to ignore in the circumstances) No one has mentioned B12 deficiency as I am in range.  I am 46 and to date hoping problem hormone related but dont think so the numbness (without losing sensitivity) and pins and needles are too strong and constant.  No pain generally although have had a few sharp pin feeling pins in top of toes but only half a dozen times or so. Really worried Ive done some irreversible damage.     Anything you can add would be very gratefully received.  Am feeling very stressed symptoms arent helping.  Had a very difficult year two family bereavements and more and brain MRI - neurologist said MRI showed probably AV fistula in artery - after 6 weeks of sheer terror and a cerebral angiagram turned out artery was normal just slightly larger than average but no problem but whilst good news the numb toes persist!!  

      Tracey

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    • Posted

      Hi Tracey a b12 level of 282 is on the low side. Do you know what your folate level was? A low folate can cause falsely high b12 serum level. Your symptoms are typical of mine. Do you also have balance issues. Eg standing with your feet together and arms relaxed by your side. Close your eyes, do you sway about? I can't do this as I sway about. I suffer bouts of tinnitus too. Fatigue can be debilitating. Yes, hypothyroidism can be linked to low b12 too.
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    • Posted

      Once receiving b12 injections it is impossible to know accurate levels as the injections cause a false high b12 serum result. Inactive b12 fills up in the blood from injections. Unfortunately the b12 serum test measures both active and inactive b12. The b12 then uses your folate to become active and enter your cells. It is very important to have a good folate level for the injections to work efficiently. I have a monthly injection as my symptoms worsen after 3 weeks. I also take a daily b complex to help my other b vitamins.
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    • Posted

      Hi Heather  thank you so much for responding to my message; I really do appreciate it.  Ive felt so isolated and rather down over the past 4 months whilst a myriad of neurological tests and scans have been carried out which have showed up nothing and it transpires it could be that the cause has been deficient B12 levels.  Unfortunately as the normal range is said to be 150-883   with mine at 282 (in September) I appeared to be ok so far as my GP was concerned. Its probably dropped further since then. It seems crazy that other Countries have a lowest acceptable level of 500 and the UK 150!  Looking backing I am surprised no one asked if I was vegan and I didnt make the connection as I eat a generally good wholefood diet albeit lacking in B12.  I have over the years taken a multi vit with B12 but Seven Seas stopped making the Vegetarian version so I got lax and havent taken any for a number of months. I am now eating eggs and dairy which is strange after ten years of being vegan but I have to get well.  I am going to try and get nurse to give me a B12 blood test tomorrow morning before the B12 injection so that I know what my current readings are. Back in September when I got out of bed the toes on my left foot were tingly - its now alot worse.  Over the past 4 weeks the muscle issue in my foot appeared and of the last few days I feel dizzy and my eye sight isnt right and Ive felt exhausted in the morning (just not like me)  Infact Ive felt abit 'unreal' the past week.  When I close my eyes I do sway abit.  Im so sorry you are experiencing similar symptoms - I cant believe I didnt make the connection sooner.  I was only as I recently asked for a copy of my blood result test that I started scanning the numbers and looking stuff up on the net.   My folate level is 12 out of a range of 3.1 - 20.5 so that would seem ok.  I am just keeping my fingers crossed I dont react to the injection and Im not sure where I would go next if this did occur.  I seem so sensitive to the chemicals and carriers in certain drugs.  I have started taking Vit B Complex (50 ug) once a day and I thought my odd feelings were down to the tablets but Im now wondering if the deficiency!!  I bought today Solgar methylcobalamin 1000 mcg and might take one today to see if i react - I understand its the cobalt that people can react to and its doesnt appear to be any way to avoid this (let me know if you know of any please) Can I ask how long you have been having the injections?  I am assuming your B12 levels are increasing on the injections.  I am also wondering if it matters whether the B12 injections given a false reading as its the B12 thats in your body that matters although I can understand that you wouldnt know when to stop the injections - perhaps I am being stupid and not understanding the point. I have also realised that my low thyroid reading of 0.56 means I am hyper and not hypo - am going to have to research things to find out what I need to do in such regard as the Thyroid function test range there is 0.35 - 4.94.  sorry for long rambling message but so much to say!!    many thanks and best wishes Tracey
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    • Posted

      Hi Tracey. Any form of b12 supplements can cause a falsely increased b12 serum result. You may find that the injections may intensify symptoms and this is normal. This is your nerves wakening up and healing. It is good you are taking a b complex too as this will help your other b vitamins. I would suggest you take some more folic acid to help your injections. Just 400mcg per day will help. It will take time for your healing to complete as it can take years for the damage to be done. You are on the path to recovery. You may need b12 injections for life. Not all vegans have a b12 deficiency just due to diet. It takes up to 4 months for an accurate b12 serum result after stopping b12 supplements.
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    • Posted

      you can ask heather be very lucky to get , all they have ever done on me is the very basic tests that always come back ok .

      i have fibro ,  iv noticed that i am extremly tired just recently normal with fibro .

      but as far as i concerned slow hair growth on the legs and under arms is not

      ,iv shaved both about twelve weeks ago and i have a bout 2days growth. i showed my accupunturist this and even she said god i get that much after a couple of days . but no joy with doctors said it was my age and hormone change ,stupid me thought it got worse at menopause .if anything. i give up with doctors.rolleyes

      mad

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    • Posted

      I really do appreciate your replies Heather - many thanks.   In particular its good to hear that if my symptoms worse after a B12 injection not to panic - I have heard that nerve re-grow (if damaged) at the rate of a fingernail so not to expect too much, too soon.  I just wish Id made the connection earlier.  I guess we have our NORMAL RANGE to thank for that.  I certainly will take the folic acid you have suggested and have the additional thyroid tests done particularly as I am at the very low edge of the acceptable range.  thanks again Heather - youve made such a difference to my day!!!
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  • Posted

    Low potassium levels can cause all sorts of twitching and cramping. Maybe ask if they could check your vitamin levels as well. An MRI should be reassuring and I hope all is well with you.
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  • Posted

    Just to add on i also suffer from health anxiety and have been told this by a doctor
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  • Posted

    this is a tough question because you have no given diognoses .

    i would try accupunture till you find out whats wrong .

    the mind is a very powerful thing you can think your self ill 

    you really can . .i hope the mri rules out anything bad .

    you are proberly suffering from servere anixety

    people can come out in rashes and blisters and a lot worse 

    with just anixety . so fingers crossed thats all it is .

    i say all i know from suffering with it myself its not easy to live with 

    i use accupuntre and relaxation cd works well .cool hang cool hun

     

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  • Posted

    How are you feeling Emily??? How did your MRI come out?

    I also have health anxiety but ive had so many different symptoms since last year in aug. Like muscle pain? One sided headaches, vibration in legs and twitches everywhere which started in Nov as i got so stressed.....ive also had a brain mri that came out fine but now im working woth my gp to see whaT i have. Ive also

    Stopped contraception in aug and i get my periods so late it can be two months without a period.

    I hope your feeling better xxx

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    • Posted

      Hi, im still feeling crap. My mri came out woth an enlarged pituitary gland which ive had more appointments for. Ive completly forgotten about als as it was a pretty stupid fear as it is pretty impossible for me to get which i wish id of realised instead of wasting 2 months on this fear.

      Obviously my fear has moved on to adrenal cancer due to symptoms of that and an enlarged gland.

      Just a viscious cycle that im always in which sucks. Also the mri was reassuring as its actually come back with something sad

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    • Posted

      Aww im sorry to hear that. Im still here struggling with muscle pain grrr whci is everywhere and muscle twitches which are less now but the muscle pain is so annoying as i finished uni ladt year and started a new job and is so hard to cope...i wonder if it will get worse in time or better?! ☺️

      How r u doing these days??? X

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