Suffuring and losing hope to recover

[Abdou_ever]

Hi, am new to this forum, I was suffuring from anxiety and panic attacks since 2009 and my health going down till this April 2017 got checked for b12 ! I got low b12 saturated bounding capacity ( Transccobalamine) and high homocysteine! I started injections once a week methylb12 and I switched to hydroxicobalamine every other day 10 times than every week! I felt amazing first days of treatment then my symptoms got even worse! Extremely fatigue and ever slowly moving ! Am woried if it's ALS or MS or other than b12 defecient! Any possible help is very welcome! Sorry for my English coz I am also having some cognitive problems! Thanks u

[patez]

Hi.

Sorry to hear about your problems.

I am not an expert and cannot give medical advice, but I can tell you that I have been told that symptoms can get worse before they get better. They did in my case, and it can be a roller coaster ride I'm afraid.

I have to SI because B12 injections are not available from the doc or hospitals in the country I work in! I started daily SI over 9 months ago (doc here diagnosed me with severe B12 deficiency after my right hand and fingers started tingling and going numb), and I felt on top of the world, until January 2017. I underwent an awful lot of stress (Mother died, and then I had to have an operation) and I went downhill rapidly. After 3 months of daily SI again I felt some improvement but I then stopped SI completely for 1 month in April 2017 (I was away on holiday and did not take any B12 with me, silly me!), but started SI again once every 3 days, for 1 month. I just had a serious relapse 3 days ago and ended up in emergency in hospital. I had severe chest pains, back pain, dizziness, cramps in the foot, extreme tiredness and fatigue, and diarrhoea. The doc did not know why I was so sick and did not do any tests apart from an ECG to rule out a heart attack. From my experience with B12 deficiency symptoms, I knew what it probably was, after a heart attack had been ruled out. I have started daily SI again, and I am slowly improving after only 3 days of daily SI.

To answer your question about the symptoms getting worse after the initial start of treatment, I did have the same problem when I 1st started, and the very kind and knowledgeable people on here advised me that is was common for symptoms to get worse before they get better, and relapses can occur also. It can take a very long time before recovery, and it can be a real roller coaster ride.

Other people may be able to advise or contradict me on this next bit, but you say that you switched from Methyl to Hyroxo, and that is when the symptoms came back with a vengeance? Maybe the Hydroxo does not suit you?

I have had great support and guidance on here and I hope that the more experienced people on here can give you further advice.

Best wishes for a speedy recovery.

Patez

[clivealive Forum Support]

Hi Abdou_ever

Have you had your Folate level checked?

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

As patez says it is not uncommon for some neurological symptoms to appear to get worse before they get better as the B12 starts repairing the damage done to your nervous system. Whereas some symptoms may "disappear" quickly others may not and a lot will depend on the severity and longevity of your B12 deficiency.

I am not a medically trained person but I've had P.A. for over 45 years.