OT: what's up

[Justiina]

Haven't posted for a while as B1+B6+B12 injection gave my life back ..at least for a while. Injection still works very well, I have gained two kilos despite being physically very active, blood pressure increased a bit and I sleep so good!

Thyroid wise things settled at least for a while by just adding some iodine ,which I now can tolerate far better. All seemed good.

But then sh*t hit the fan and I got optic neuritis, had total loss of vision of my right eye, was half blind for three weeks. And that was a journey, was forbid to drive or to do anything physically hard. Eye movement was painful for 8 weeks and was not able to be on computer at all. As it was second ON I am now facing loads of tests to rule out loads of illnesses. Need MRI to rule out MS, tumours, cancer etc. Doc said the fatigue indeed could be MS.

Fortunately my vision fully recovered, there is no sign of damage which often happen during ON. No sign of either one of attacks, same eye.

Oh well at least I will get my thyroid tested again without asking

I hope most of you who remember me are well and have found a good doctor taking care of proper treatment!

It has required very good humour to stumble through loss of vision as I have literally been a walking disaster!

[LuckyKat]

Hi Justiina, so sorry to hear about your problems - especially when things had been looking good. The loss of vision must have been frightening!

Here's hoping that you find all the answers you need quickly,

Best wishes, Katy

[Justiina in reply to LuckyKat]

Thanks true, it is frightening as there is nothing to do about it, you just wait and hope vision bounce back fast.

[Marymary7]

Sorry you have been unwell. I don't know your story. I just wanted to say that untreated Pernicious Anemia can lead to Subacute Combined Degeneration of the spinal cord which can be mistaken for MS . It's perhaps worth having a google.

Good luck.

[Justiina in reply to Marymary7]

Thanks! I actually read about it just recently when I googled optic neuritis. Over here in Finland they need a sample to diagnose PA , so you need endoscopy which they have not suggested even though my B12 was low and homocysteine high . Let alone any type of antibody testing.

I am still recovering and need weekly injection to feel well so it could indeed be the B12 (injections started may 2018), as it can take a long time to heal.

[Marymary7 in reply to Justiina]

I have heard of people who have to self inject once or twice a day. Sometimes a different form of b12 injection works better. If you have cyno then maybe hydroxycobalamine or Methylcobalamin would work better.

The Health unlocked Pernicious Anemia site is excellent.

[Justiina in reply to Marymary7]

Yeah I am on cyano as it's combo shot with B1 and B6 , can't have it with hydroxy or have B1 and B6 separately. So far it has worked just perfect but will see after tests if that need to be changed. B1 and B6 goes for mild mitochondria issue on cellular level, need B1 to convert carbs to energy.

[Tnhundley]

You might need injections more often.

[nightingale-56]

Hi Justiina so sorry to hear of your eye problems and glad to hear that it is back to normal now. I wish you well in your other tests and hope you do not have any other problems.

[Justiina in reply to nightingale-56]

Thanks nightingale-56 , you are always so supportive!

[nightingale-56 in reply to Justiina]

Caring is what makes the World go round Justiina . Happy, Healthy New Year. xx

[Polly91]

You poor thing Justina. What a tough time. I truly hope things continue to improve.

[Justiina in reply to Polly91]

Thanks