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Severe Vitamin D deficiency, sudden sun allergy and chiari symptoms worsened

Posted , 3 users are following.

debbie42908
debbie42908

At my NL appt November 2014 numerous blood tests were taken, so at the follow up, as well as being told my cerebellar ectopia was not a Chiari Malformation, I was told all the blood tests were normal. In summary none of symptoms could be explained, but he wanted to give me Occipital nerve block injections. At the end of May after insisting on an appointment to meet the doctor who was in charge of my care, he restated what he said in his letter. His only suggestion was Botox but even he didn't sound confident that it would help as the previous occipital nerve blocks hadn't. As I was leaving he said he would write to my GP to sum up today's visit and that also I was slightly vit D deficient so would recommend supplement s. I saw my GP who hadn't been told that the November blood tests showed any vit d problem. I said I was going away the following week so prob a bit of sunshine would do the trick. He agreed and although he didn't have the results said the dose recommended by NL was extremely low. Indeed I had a problem getting prescription filled as the strength was very low. The pharmacist said OTC supplements were too strong so ordered it in for me. So I looked forward to my week away. 1 day in the sun and I erupted with tiny blisters and lymps all over the back of my hands chest and throat. I usually use high SPF but cos of vit d issue used factor 15. So I needed full sun block and complete cover up. Iv come home to find a GP letter saying they had the Nov results and my vit d was 20nmol/L (8ngmol/L). On its own this could cause a lot of my neuro symptoms and certainly affect my skul spine brain situation. I am SO let down, Iv a history of Graves, am 55 so perimenopausal and also work in the dark most of the time ( optician) so Vit D is an important thing!!. Before I had this information I asked for 2 and opinion by Liverpool, so have got that appointment on 22nd June. Meanwhile occupational health want to see me , iv been on SSP for 2 months and my life is falling apart. I am hopeful about the Liverpool appointment but getting vit d to a normal level is I expect a priority and another needless delay to the ( now 14 years) Iv been trying to get some help

0 likes, 3 replies

3 Replies

  • DizzyDora
    DizzyDora debbie42908

    Posted

    Hi Debbie, why do they do this, I too fought for years before I got my diagnosis. I just wonder if the rash you had was photosensitivy to the sun.

     Are you on any medication at the moment? That certainly could cause it. Good luck with your Liverpool appointment, I had my decompression done there😄

    • debbie42908
      debbie42908 DizzyDora

      Posted

      Hi Dora thankyou so much for your prompt response, I feel like a complete moaner and bore myself with the growing list of problems. Yes the sun thing, iv always reacted badly & was told I had prickly heat, but it seems it is a photosensitivity as it affects parts not covered up whereas prickly heat is I think swaet gland areas covered with clothes. Anyway I live in Manchester and don't go abroad regularly however I discovered pinz bruit allergy and use SPF 25 if I am in the sun. Its such an infrequent problem that I forget about it. This time though cos of vit d I thought I should let some sun get to me so still used the allergy stuff but SPF 15, the reaction was really quick just having hand out of the car window early morning Greece and it swelled up and developed blisters/ blood blister things. I'm only taking gabapentin 600 3xday but yeabi hadn't thought of that as being responsible. Local pharmacist said it was a sun allergy took antihistamine and spf30 on hands face etc.
  • klzblz
    klzblz debbie42908

    Posted

    I currently know of a patient with numbness and some weakness with a severe vitamin D deficiency and also B12. The fact is, you only need about 5-15 minutes of sunlight per day to process vitamin D. If you eat well and go outside at all, you should be fine with normal absorption and metabolism. If this is the case and your levels are low, you will likely need injections of an activated form to rule out digestion/absorption problems first. If this is a deficiency you haven't had your entire life, then injections should resolve the problem. If you are unable to get injections approved, there are also liquid vitamin forms that you place under your tongue or in your cheek to absorb that work well. Make sure to get a pure form (usually ordered online and more expensive) because cheap generic ones aren't very well released from their binding agents, which means your body cannot absorb them. 

    There are labs that will run a panel for multiple vitamin and mineral deficiencies which cost under $200 USD. It would also be best to be tested for celiac disease or other food sensitivities. Be careful, because if ordered by a run of the mill GP, they will only tell you if your results fall outside their ranges considered normal. The fact is, that people with lab results that fall at the upper or lower ends of these ranges very likely experience symptoms. With the lack of quality medical care and pharmeceutical-based knowledge only, actual physiology of organ systems is grossly unknown by physicians at medical facilities.

    Also, have you had an MRI?

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