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Doctors don't know what's wrong, your thoughts

Posted , 8 users are following.

Bonnie123456
Bonnie123456

I'm a 30 year old female. For over a year now I have experienced cramps all over, in places I didn't even know we're possible to cramp. Weakness in my legs a heaviness so it's difficult to walk. At times my left leg and left arm tingle and feel 'numb' I twitch a little in various places but not a lot a couple of times a week maybe. And at Times fatigue, lasting a few days, difficult to even hold my head up.

I've had mri, nct, spinal tap and various blood tests. All came back negative apart from low on vit d.

Doctors and neuro have no idea, I've had lots of different guesses ms, thyroid etc but because of results they've been discounted.

At the moment I'm still experiencing cramps all over my body at times incredibly painful; especially in my forearm it can stop me from driving. One side of my neck cramped up the other week which hurt a lot, I went to the doctors, he could feel it was cramped, he just suggested massage & suggested I google to try and find an answer and to go back and see him and tell him what tests I want!! Now doing his job!!

I'm stumped for a cause & how to resolve these cramps!

Any thoughts? Google is a demon and all answers point to mnd. My neuro sent me away after ms negative and said possible stress and if it continues to go back after a year but I'm not stressed. so I'd prefer others personal input based on similar experiences....

Any thoughts, advice appreciated. Thank you

0 likes, 18 replies

18 Replies

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  • ptolemy
    ptolemy Bonnie123456

    Posted

    Some of it sounds like vit D deficiency what was your reading?
    • Bonnie123456
      Bonnie123456 ptolemy

      Posted

      Thank you for commenting.

      Although my vit d was low, doctor doesn't think it is low enough to cause the problem.

      I've been on vit d tablets for the last 4 months now and I'm still having cramps.

    • ptolemy
      ptolemy Bonnie123456

      Posted

      Do you know what your vit D reading is, I always ask for a printout?
    • ptolemy
      ptolemy Bonnie123456

      Posted

      My vit D was 26 and told it should be 50. Although others have said it should be 70. I started taking vit D supplements about a year or so ago and am now 72. I try and sit out in the sun as much as possible too. 
    • dee50000
      dee50000 ptolemy

      Posted

      Living in overcast upstate New York, my vitamin D level was8 until it finally went up to 12 after taking 50,000 IU a week. Yes, should be about 50 I have read. I also have a very low level of B6, 2 (should be 60).

      But doctors don't connect this with my eye-brain symptoms of after-images, jumping retinal slip, and migraines, all which cause me to feel off-balance when I move my head. At all. Even If I'm laying in bed, my pulse is enough to cause my head to move enough so I have these symptoms. Sounds crzy, but my neurologist understood and validating it. 

      Good luck. I have they can at least raise your vitamin levels. It may help.

    • Terry6872737
      Terry6872737 dee50000

      Posted

      Try a liquid vitamin D supplement made by "Pure".  You can get it from Amazon.  It runs around $25 but, it increased my levels significantly.  Liquid form absorbs into the body much better than the tablet form.  I took tablets for over 4 years and my level only went from 28 to 31.  I took the liquid form, 7 drops of the Pure brand each day, and over a period of 6 months my level went from 31 to 52.  I now take 4 drops each day to try to maintain my current level.  20 is on the low range of normal and 50 is on the high level of normal from what I have read. I have also seen others recommend a level of 25 to 80 for healthy adults.

       

    • dee50000
      dee50000 Terry6872737

      Posted

      Thanks. The capsules are liquid, but at this point, I'll try anything. There are recent medical articles out there that show low D causes  a lot of problems. 
    • Terry6872737
      Terry6872737 dee50000

      Posted

      The difference is that the capsule goes into the digestive system, the stomach, and is then treated like anything else that we intake.  85% of a vitamin taken orally in tablet form, even liquid jell, leaves the body through the digestive system.  In liquid form your body will absorb almost 95%.  It, the Pure brand, doesn't have a bad taste either.
    • dee50000
      dee50000 Terry6872737

      Posted

      Thanks Terry, is that the brand name, "Pure"? Is it available without a prescription, and how do you know how much to take, and not too much? I am assuming you can get it at a nutrition shop in the US? 
    • Terry6872737
      Terry6872737 dee50000

      Posted

      Pure is the name brand. I know that Amazon has it online.  No prescription needed. Not sure what other places carry it.  It tells you the dosage on the label.  I took 7 drops each day for 6 months to increase my levels.  Recommendation is 1 to 7 drops each day. Each drop is 1000iu. 
  • lynne69494
    lynne69494 Bonnie123456

    Posted

    hi Have you checked out fibromyalgia, cfs, most of your symptoms are simular, and neither would show on standard tests.  Vit d being low often goes along with it, as can cramps, which l get, used to be mostly in my legs, calf lst then thigh, now get cramps spasms in my hands and feet. tingling pins and needles also common, though the  fatigue is more permanent, but can vary.  Worth looking up, l can relate to the gps d.i.y approach, but at least yours is telling you to let him know what tests you want, that is good, many dont, or wont do more than standard tests, but if fibro you,d need a rheumatogist to diagnose, maybe a possability.  good luck
  • Winnie143
    Winnie143 Bonnie123456

    Posted

    Hi Bonnie,

    Well you have had the tests so do not know what to say, sorry but as I do not walk very far I get cramps in feet and I move my feet in circles and try and do little excercises but often, have you tried Vit D yet ?

    Wish you well and never give up  xx Promise ? I smile a lot but guess you don't feel like that nowdays xx  Be Well and never say never xx

     

  • Winnie143
    Winnie143 Bonnie123456

    Posted

    Check on foods with the vitamins in like oily fish etc.

    Never give up.    Docs said I wouldn't walk again but approx 60 to 100 yards and dignity back !!  

    Good luck

    Win xxx xxx (Again) lol

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