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Some good news - Vitamin D

Hi everyone, I have some good news. Saw another neurologist today and he said my exam is totally fine. He said he can’t find anything alarming and while he believes my symptoms are real, he definitely doesn’t think it’s anything sinister. He has no idea why I was told PPMS.

Then my GP called, I have a SEVERE vitamin D deficiency. My level was 6!!! He said this could be causing the weakness and dizziness.

I’ve still been offered an MRI for reassurance but I don’t think I need it

To be completely honest, Worried, we have been trying to tell you that your symptoms didn’t sound like MS the whole time. And as for being told it was PPMS, I think you may have heard the words, but you talked yourself into believing it was that because your symptoms didn’t completely remit.

Don’t get me wrong, I’m very pleased for you that it’s a vitamin deficiency not MS.

But, next time you get something wrong with you, try believing the doctors who tell you that it’s not whatever you’ve talked yourself into. Obviously this time it was MND or MS, then PPMS.

And thank you for letting us know.

Sue

Oh no the first neuro definitely did say those words. I’ve also seen a lot of people describing the same thing as me so I assumed the worst. I hope the vitamins make a difference

If you go back and read what you put on the first thread you started: https://community.mssociety.org.uk/forums/new-diagnosis-and-diagnosis/worried-all-time-not-diagnosed you said that all the doctors you’d seen told you it didn’t look like MS and that you shouldn’t worry. Obviously someone should have tested your vitamin levels at the time, but you were told (as you said) that it did not appear to be MS.

I’m not trying to make a big deal out of this, or to belittle your very real fear. You clearly had something wrong with you, but that something was not MS. And you ignored all the doctors who told you that. You’ve been so stressed over the last weeks/months. I’m suggesting that if you get a health worry in the future that you get less worried; try to let the doctors diagnose you, rather than making them prove that you don’t have something much worse. Oh and have a look at the last posts on your thread: https://community.mssociety.org.uk/forums/new-diagnosis-and-diagnosis/symptoms-rrms That might be of some interest too.

All the best.

Sue

my GPs didn’t think it was MS but one neurologist did. I am still having the same symptoms despite the fact that I’ve been told not to worry, I can’t even write properly! I’m just hoping that it’s all down to vitamin D

I hope so too. I think a severe vitamin D deficiency can manifest as neurological symptoms. So with luck the supplements will sort you out.

Sue

Thanks sue! I hope they do