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[Nackapan]

Posted earlier today. Does that mean no one has crashed like this post loading doses of B12?? Had one trip downstairs . Body like lead then managed to get back up and no choice but to lay down again as felt so heavy and skep in exactly same spot for work hours?? All very worrying. Seemingly getting more exhausted not revived?

[Gambit62 Administrator]

Nackapan, many members of this forum have jobs. Others have other health conditions which can also impact on how much time they are able to spend on this forum.

Admin are all volunteers and trying to juggle a number of commitments.

A lot of members respond to posts from reading through daily summaries so it can be the next day before people are aware of and respond to posts.

I think I had more problems with tiredness etc immediately after loading doses but it was a long time ago and difficult to remember in detail.

Many people do find that they are quite tired for a day or so after a B12 shot - even when they are on maintenance does so I wouldn't say it was an unusual situation to be in.

It can take many months for improvements to start - I didn't really notice anything until after over 6 months after loading shots - when I had my 3rd maintenance shot.

[Nackapan in reply to Gambit62]

I actually would rather no replies. Very upset now as well as extremely poorly. I've tried my best to support others in my awake moments. I wish I was at work and able to leave the house. If you have actually been there ,I don't understand why you would be so angry with me wanting a response.

This isn't tiredness I can barely weight bear.

[Annnon58 in reply to Nackapan]

You sound extremely unwell , I think you should see your GP ASAP , good luck .

[Nackapan in reply to Annnon58]

Yes I think I will again. Last telephone consult as couldn't get there 1 week ago.

Thanks

[Nackapan in reply to Annnon58]

Finally got telephone consult. Doctor was concerned with severity of latest symptoms. He has prescribed Amytriptyline incase needed if not sleeping through the night. Low dose . Haven't used it yet but strangely good to have if I want to knock myself out. Im very resistent to taking drugs to try. The semi dark existence and symptoms ever changing is very challenging. He did explain how nerves are long in the cerrobellum dealing with balance ect. They do rejuvenate but very slowly. So I'm trying to stay calm eat and drink and if I can't move try and go with it. Hoping this repair can happen. Have got a referral to a neurologist but glad there is a wait as couldn't get there.

Hope you doing okay.

[Foggyme Administrator in reply to Nackapan]

Just a comment Nackapan . Have to say that I don't see any 'anger' in the response left for you by Gambit62 .

You did complain that you had not received a response to an earlier post and the reply simply outlined the reasons why responses are sometimes not as swift as we all would like. Fora like these do not operate via the same immediate response timelines often found on social media platforms and many would be reassured by this type of explanation since it reassures posters that they are not being ignored.

Furthermore, the reply did answer your question about the potential for crashing post B12 injections.

In addition to Gambit's comments...

Suggest you consult your GP if you continue to feel so unwell...if macrocytic anaemia was present on dignosis and before the B12 injections, you may well have low potassium levels (potassium drops quickly in the red cell repair process at the beginning of treatment with B12 injections if macrocytosis is present). Your GP can check this for you, if concerned.

Might also be worth checking folate, ferritin, and vitamin D levels if not already done. Those with B12 deficiency often suffer with Low or deficient levels in these, which can make you feel very weak and unwell...much like the symptoms of B12 deficiency.

Hope you begin to feel better soon.

[Gambit62 Administrator in reply to Foggyme]

Thanks Foggyme - can only reiterate what you have said - there was no anger in the reply and I'm sorry that Nackapan took it that way - merely an explanation as to why it can take a while for replies to start on a post

[Miss-guineapig]

Hi Nackapan, keep positive, it does take a while as Gambit said. I was genuinely at my worst during and the few months after loading doses, you'll get there. It's a very complex disorder and we all suffer different things at different times. Hang in here, this is a fantastic group, but I know it's hard during struggle times. Hope you get on ok at Dr's xx

[Nackapan in reply to Miss-guineapig]

Thank you

[pgw1000]

Hi Nackapan, sorry you are feeling so unwell. I'm a good few weeks on from my loading doses. I can tell you that I thought I'd made a mistake by having them. I felt twice as bad for a week or so after. I was sleeping for around 14 hours a day and was extremely tired when I was up. Although I was a little worried, I looked at it like it was my body healing and needed the sleep to do so. I'm still far from being well, but I have noticed some real improvement. I no longer have the night sweats that plagued me for years. The breathlessness is improved and I feel more in control of my anxiety issues. I guess what I'm trying to say is hang in there and try not to worry, but definitely speak with your doctor, even if it's just to put your mind at rest. Good luck and I hope you see improvement soon. Take care

[Nackapan in reply to pgw1000]

Thank you. IMrs glad you have seen some improvements.

Can't get hold of a doctor today.

I'm having those awful sweats too. Headaches back today . Roller coaster.

Does give me some hope of improvement as I do get scared at times cocooned in my room.

Thank you

[pgw1000]

You'll get there. For me anxiety is a very real part of the illness, but as I said, a few weeks down the line and I'm in better control of it. I had nights sweats for years, but they literally vanished soon after the loading doses. Everyone is different, and will heal at different rates and in different ways. I bet you'll feel much better soon. But speak to your gp when you can, I'm sure he/she will help reassure you.

[Nackapan]

Thank you .You take care too

[Cherylclaire Forum Support]

One of the signals that I'm not doing so well is in the way I react to others. Anxiety, mood swings, irritability, being argumentative, not understanding or misinterpreting conversations, not being able to comprehend or remember plots in TV series, not being able to concentrate enough to read a book etc. At my worst, I have had arguments with GPs, consultants, nurses, chemists, librarians etc......

I do remember how frightening it all is too, and lonely. Take very good care. Trust that the people on here understand these feelings. They have all been varying degrees of you.

Keep posting. It can get a lot better than this.

[Nackapan]

Do hope you are alot better now.

Yes I'm right in the struggle. All day in bed again yesterday with nausea and a headache. Then up in the night with new symptoms. The usual sweat but with tremors and a very dry mouth. My arms were affected for the first time. Able to eat a bit today but very off balance just getting from bed to bathroom. I contacted theDoctor and was promised a call back. It's not happened . I also have been unable to read a book or watch TV. Some of it is my vision too poor at times and light sensitivity and noise sensitivity sets my body off again with horrible symptoms.

I can relate to what you say about mood swings and anxiety. I had that many weeks ago. Too weak now.

So I will hang onto your words "it can get alot better than this"

Thank you