Do I need to see specialist?

[Hamayeshguy]

My symptoms to some extent improved by taking methylcobalamin pills now I started hydroxocobalamin and stopped cyanocobalamin injectionbut I have too many neurological symptoms like severe muscle weakness in feet, stomach shoulders and back also I have numbness in my hands and back and upper back up to skull. Double vision, blurry vision but I feel my symptoms stopped worsening. My symptoms was getting worsened in the last seven months despite of cyanocobalamin jab. Last summer I didn't have these symptoms just very tired, I was recovering from megalobalestic aneamia then I tried to exercise because I had dizziness, but my symptoms exponentially developed because cyano jab didn't work then I started to take high doses of methylcobalamin and also started to take iron pills and switched to a better b complex but kept my cyano injection. hopefully my symptoms stopped to develop further but now I have many severe symptoms. Now I'm so irritable but better than before. My eyesight blurriness improved but not double vision. My dizziness improved and now barely have dizziness. A freind of mine suggested me to find another GP and get referral for auto immune disease specialist, but I think its not necessary since I didn't have good experience with them. I just diagnosed with low b12 in 2014 but didn't have symptom in that time and gradually my symptoms started to show up. I don't know what to do. My GP supposed to get me referral for rheumatologist but probably he didn't do that. I have no idea why but I think even rheumatologist can't help. What should I do please help me

[Nackapan]

Methylcobalamin can in some cause irritability ,bad mood. Regular injections if cyanocobalamin or Hydroxocobalamin takes time yo give improvements

Best to stick to one regime snd wait and record.

Take any referrals you can.

Neurologist

Rheumatologist ect

They will and can at least rule out things

Some get a diagnosis

Some treated for symptoms with no diagnosis known.

I was told over 3 yesrs ago by a neurologist

' no quick fix

Keep going and keep b12 levels up.

[MoKayD]

Methylcobalamin caused extreme anxiety, irritability, depression, and insomnia when I tried it. I tried it a second time and had the same reactions. Try stopping the methyl and see if you feel better.

[Hamayeshguy in reply to MoKayD]

I can't stop it because it helped me a lot but this anxiety is also very bad. My GP prescribed me Escitalopram but I found it has interaction with NSAIDs that I take a lot. The reason that I can't stop methylcobalamine is due it's very good effect on my muscles. I felt Im dyeing before that but it helped me to stand on my feet. I have no other choice.

[MoKayD]

Going off Methyl for two days isn't going to hurt you. It only took 48 hours to rid my body of the methyl. All forms of B12 work.

[Hamayeshguy in reply to MoKayD]

I can't stop it before taking that I couldn't walk I had severe muscle weakness severe pain and numbness I didn't know why I have too much muscle involvement but it's so severe. Methylcobalamine helped so fast but its jittermess is so serous. I want to taper it gradually and replace it with more injection. It helped me to raise my injection tolerance too. I don't know how it helped but it helped a lot

[MoKayD]

OK

[Hidden]

Life is really giving you a kicking. Having read your posts and the replies I think Nakapan has the rights of it suggesting you need referral to a specialist but the problem is which one.

All I can do is relate what I have gleaned as just another sufferer from B12 deficiency as I am not medically qualified or trained.

After several years of debilitating and irritating peripheral neuropathy I was eventually referred to a Neurologist. At the time I was self injecting 1mg in 1ml hydroxocobalamin bolus every week which was keeping the peripheral neuropathy at bay. She wasn’t prepared to underwrite that as she couldn’t see any links by which my report of symptoms of burning and nerve tingling etc starting to be going away after about 30 minutes could be happening. Despite being annoyed at being accused of lying I was pleased to be tested to prove there is neuropathy and it matches exactly what I had reported.

She did agree that the pain and discomfort needed treatment and suggested Amitryptoline, which unfortunately resulted in bright pink flush right up to my elbows. I only took one of those.

I find I start with tingles and burning in feet early evening so I take two codeine, then when it come back later another two. Usually that does the trick but may require two more in the early hours for being able to sleep.

Now I am not needing the self injection for at least two weeks but when I cannot sit still, get on fire, tinnitus going mad, hands stinging and so on I add another couple of codeine around two am. (The guidance for b12 deficiency says to treat the symptoms not the numbers).

Mild diabetes type two, Atrial Fibrillation, and hypertension all must to some extent add their own effects, but are treated separately.

You have found you can get some relief from oral cobalamin tablets as well as from injections. For most of us who suffer from the problems of b12 deficiency injections is our only viable route, we are not able to absorb the vitamin through digestion.

My wife has problems from Restless Legs Syndrome which gave very similar symptoms to what I was experiencing but has has been relieved with low dose dopamine tablets. She was also tested for her ferritin levels which were found low so had that restored. The Restless Legs Syndrome is a thing of the past, provided she has her daily Pramipexole pill. Her b12 is normal.

Diabetes type two can be a cause of peripheral neuropathy. In my case I reporting symptoms long before even b12 deficiency was diagnosed so whilst there may be some effects from the diabetes it isn’t the whole of that story.

It is so easy to blame b12 deficiency for a whole host of symptoms without looking for the real causes. There were many things happening which I was only too happy to hang in the B12 diff peg until I realised there was probably a much more likely one - the day I was born, it is now over 77 years ago. Life itself is a debilitating condition which eventually beats all treatments.

Your Escitalopram is of course for depression and it is hardly any wonder you are feeling depressed.

When there are several things going on it is never easy to get clear diagnosis or advice. You may find you will be going to see many different specialists before the right solution is found.

(I had a speech problem some years ago which stopped me working. I was treated for asthma for seven years until a gastroenterologist found the real cause and a surgeon cured it immediately with a Nissen Fundoplication, which probably caused my b12 deficiency five years later.)

Keep searching, there is a solution for you, probably there from an unexpected source. Best of luck, don’t despair.

[Hamayeshguy in reply to Hidden]

I have seen by neurologist and done electric conductivity test. He said my situation vis general and not related to nerves. I have seen gastroenterologist too. I have not taken Escitalopram yet because of interaction with pain killers the reason I have too much muscle involvement is due to high physical activity during b12 deficiency. And I have no idea how methylcobalamine does work but it helped my muscles pretty fast. Methylcobalamine gives jittermess but it helped me and I can't stop it right away and I have to just taper it off and increase my injection frequency

[Hidden]

It will be fascinating to read of your progress.

[Hamayeshguy in reply to Hidden]

All of my bloodwork result is in normal range