Are worsening symptoms after injection could be sign of severe b12 deficiency?

[Shajarin]

Hi all, before the question itself I would introduce my case as I'm new here. I suffer from severe tiredness, muscle/joint pain and muscle weakness as well as many other neurological symptoms. It all started one and a half years ago after blood donation. I had severe tiredness for almost a year and then the other symptoms appeared gradually. My condition is getting worse and worse.

I have been checked by many doctors and had many lab tests and MRIs. All came back clear except LYMP abs a bit low (1.37). They don't really know what I have thought one reumatologist suspects it may be CFS/ME. I'm about to see my GP this week and ask her to run PA tests for me. My last b12 blood test results (on March) were 191pmol/L (200-900) and my Endocrinologist assumes that my symptoms could be explained by the b12 deficiency (I also have sub-clinical Hashimuto for years) but she does not sure about that.

In the meantime I used sublingual b12 tabs for a week without any effect and I got the first cyanocoblamin 1000mcg injection today afternoon. Now at night I feel horrible, anxious, weaker and about to faint, my muscles are weaker and painful.

I have noticed in previous posts here that many patients feel worse after the first injection but does this mean that the b12 deficiency truly explains my neurological symptoms? or not necessarily?

MS is probably not the case as my head MRI came back normal neither MG as Acetylcholine receptors were negative. Could be other frightening Neuro-illnesses though (ALS?).. CFS/ME doesn't seem to be as I hadn't any virus or flu before it all started. So once again I would like to understand whether the adverse effect of my b12 treatment implies that the symptoms are caused by the deficiency of the vitamin. I would also welcome any general suggestion to explain my symptoms.

[EllieMayNot]

Many experience an exacerbation of symptoms once they start injections and as healing begins. For me it was kind of a one step forward two steps back kind of experience in the beginning. While I no longer feel like I am moving backward, I do still experience bad days even though I feel like I am moving forward more than backward at this point in time (I've been injecting for about 5 months now). Everyone is different and with neuro symptoms I have to think that the type and extent of the damage will determine how quickly and fully someone recovers.

Hope you have more good days than bad and that healing begins quickly for you!

[YogiGreg in reply to EllieMayNot]

Ditto EllieMayNot , exactly the same for me. At 7 months now since starting injections and very much improved, though still have bad days which are becoming less and less, though my bad days now are better than what a bad day was 2 months ago. Agree that it will be a different journey for everyone.

[Shajarin in reply to YogiGreg]

thank you both for your comments, hope that the problem is indeed b12 deficiency and the recovery would happen soon..

[clivealive Forum Support]

Hi Shajarin

As others have said it is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery. Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

If you have Hashimoto's disease this may increase the risk of your developing a vitamin B12 deficiency.

If you can get to see a doctor please also ask him/her to check your Folate level as this and B12 help your iron to make red blood cells and to function properly.

I am not a medically trained person but I've had Pernicious Anaemia (just one of many causes of B12 deficiency) for more than 47 years.

I wish you well.

[Shajarin in reply to clivealive]

Thanks for your suggestion, I will ask my doc for Folate as well.

[Nackapan in reply to Shajarin]

Also ferritin levels if not already done.

[Auntyp62]

Yes I got worse before improving and I think it’s quite common. My husband was recently diagnosed and he felt fine till his 3rd loading dose then felt awful just as you describe. When we looked on his blood test results we noticed his folate was also low but doctor had not mentioned this. He now takes a b complex which contains the folate and the improvement is massive. Unfortunately doctors give the high dose of b12 but as b12 and folate work together if you don’t have enough folate you just get other symptoms. Good luck

[Shajarin in reply to Auntyp62]

Yea, I would ask to test my folate level