When nerve damage should be considered permanent?

[Hamayeshguy]

I'm so worried with my extensive muscle weakness. After megaloblastic aneamia I started to take sublingual and slow release and injected 4 times cyanocobalamin.. for seven months I was on that but my symptoms developed and then I started t inject cyanocobalamin but give or six times a months then again my symptoms developed band I was in worst pain and weakness. I couldn't even stand on my feet or even sleep . I felt I'm doing. Then started to take mega dose skiw release B12 and active b complex and iron. Then switched to hydroxocobalamin injection first two time a week and then every other day. I had improvement but still too much weakness in my muscles and pain also burning feeling in muscles. I have so bad tinnitus and blurry eyesight. Along with double vision l. Look like all of my muscles can't contract and if I experience stress then feel severe pain. Before megaloblastic aneamia I had so stressful life and trying to fix my stress by doing too much physical activity. My GO didn't have any information regarding B12 deficiency or pernicious aneamia and I couldn't get proper test but before testvI did full blood counting band MCV RDW all if them where normal. Folate was normal and iron was in range. But I had injection before test. Before megaloblastic aneamia I had umbilical hernia I think too much physical activity and low B12 was the cause of extreme weakness in my stomach muscle which ended in umbilical hernia. On 2014 another GP was told me I have B12 deficiency and I need monthly injection but other doctors vrefused to give my injection after 4 times injection. In that time first I developed some symptoms on walking and I couldn't walk on stairs and then my eyes started to double vision a little bit and then gastrointestinal problem developed. But in 2020 September I experienced megaloblastic aneamia which was heart palpitation, shortness of breath and dizziness along with sine other symptoms. Like fatigue and other things. Then these symptoms after one month or two months by taking B12 pills and four times injection improved but my stomach was in bad nuscke pain still I feel my stomach is tormented. My eyes are blurry and double triple vision which Iknow it's also muscle related. Still Waiting don't know what us exactly is the cause because I didn't have any other choice except taking B12. I have seen many specialist but no one find any health issue in tests. Neurologist after nerve conductivity test said it's genaeral. Optimalogist said it's not glaucoma. Gastrointestinal said I need endoscopy but hopefully my gastrointestinal symptoms completely abated. I'm going to see reumatolgust but my GP said It could be reumathoid arthritis. By injection bjiw lits if my symptoms improved like severe numbness in hands which was so bad and I couldn't sleep. Now I sleep well after almost a month every other day injection of hydroxocobalamin. My eyes improved. But my main concern is when symptoms should be considered permanent. Since my symptoms started 2015 and developed so fast because if my high physical activity. What is the chance if healing completely? Now inl inject every other day for almost a month but I have inject fir ten months before that but not routinely. I used to inject cyanocobalamin. And now for five months I take high dose of B12 pills slow release along with active b complex. My weakness alittle bit improved and I don't know when should be considered permanent. I hope it's not going to be permanent but it worrie me alot. Please share your idea regarding permanent damage window.

[Nackapan]

I have been told all different 'windows' of time for recovery from specialists from 2 weeks!! To 1 yesr. The 3rd neurologist saw said delayed treatment can give more damage. He said said most healing done in a year .

I'm glad he was wrong on that .

He also said keep b12 levels high snd keep going as they do not know.

Try and stay positive.

I've no explanation or reason either.

I keep a diary.

It's quite a scary read going back 😳

I'm still on a rollercoaster.

I think I'm getting somewhere then am ill agsin.

I've noticed symptoms alter.

Where there is change I feel there is hope.

Try and not overthink everything.

Its only given me frustration.

Try and just be.

If that makes sense.

Try and find distraction.

The mind is very strong.

I believe time is a great healer

Try and keep some hope.

Take care

[Sleepybunny]

Hi,

I think people vary so much that the window for permanent damage would be different for everyone.

I had had symptoms including neurological ones for over 15 years by the time treatment started (I had to treat myself).

I am still seeing some improvement in symptoms after almost 10 years of treatment although rate of improvement is very slow now.

I suspect I have some mild permanent nerve damage in peripheral nerves. I have not regained full muscle strength although I am much stronger and have a lot more stamina then when my symptoms were at their worst.

Sometimes the rate of improvement can be very slow and gradual. It may be worth keeping a symptoms diary as day to day it's hard to notice improvement but if you compare this year with last year or previous years it may be easier to see improvement.

I need far more B12 than the NHS in UK recommends for b12 deficiency.

If you've only been getting B12 injections for 10 months regularly then I think there is hope for more improvement.

I'm not medically trained.

[wedgewood in reply to Sleepybunny]

Great that you are not medically trained where Pernicious Anaemia/B12 deficiency is concerned , We all have our experiences with the medically trained in that connection . ……………You are a huge help on this forum . Please don’t get medically trained . It would be terrible for us !

[Hidden in reply to wedgewood]

"Please don't get medically trained. It would be terrible for us ! "

Probably an understatement !

[LauraJane2]

I think it can be a long road to recovery. I’d say my improvements happened over 2 years and I was then sort of back to normal. I say sort of as I can still have some symptoms return occasionally when I get low (e.g. just before a jab, after illness or if I do a lot of physical activity). I probably do have some permanent damage (e.g. the brain fog is still always there to some extent) but it’s not as bad as it was so I’ve just got used to it and it doesn’t really bother me anymore.

[Hamayeshguy in reply to LauraJane2]

My bad symptoms started ten months ago but I was on injection and now fir almost a month I inject every other day hydroxocobalamin. I'm just wondering what happened and caused that much symptoms to show. I had symptoms since 2916 almost but it wasn't that much bad. In 2929 September I experienced megaloblastic aneamia but I couldn't get proper test just in 2014 my GP was told me my b12 is so low and I need monthly injection. Doctors ignored my jab and my symptoms gradually showed up. No I feel my muscles lost all of their strength and I'm bsi sad because I need to travel and join my family bbytbI don't know how can I do so. I need help it's a long flight two 7 hours but I stay between in my brothers place and after two days going to have second flight. I'm just crying. I missed my family alot