At a complete loss :(

Hi everyone,
To give you a little background I started having tingling and numbness in half my face in May/June 2020, I went to the doctor - they said it was nothing, eventually moved from my chin all the way up to my hairline and into my hair. After some other symptoms (double vision, a fall, headaches etc.) I was growing in concern and went to A&E and after a wait had an MRI, this i now know showed 15 lesions on my brain only.
Since this (approx 8 months later) I had more symptoms including speech issues and pins and needles in my spine - i had another MRI done and they found 5 more lesions. Saw neuro and they said they believed it was MS and that they just wanted to do some bloods and a lumber puncture etc to double check anything else. They then found a B12 deficiency and put into a letter how they believed that to be the reason for my symptoms, however after my loading dose I still feel the same, tingling down my spine, speech is an issue again after being better at Easter 2021.
I have an appointment to see an MS nurse in July (been put back from June) and no official diagnosis.

I just feel at such a loss - I don’t know how to feel or what to think really.

Has anyone been through anything like this?

Hope everyone is well!

Oh Ally I’m so sad to hear what you are going through and hope you get answers soon. They don’t usually diagnose after the first episode but after the 2nd one and with new lesions I’m surprised the neurologist hasn’t confirmed the diagnosis and placed you on disease modifying drugs which can slow down the progression. I haven’t been through the same process as I was diagnosed as a child but I’m retired now and have had a really good life even with MS. Please know that if it is MS it can be managed and you will be able to cope with it.

B12 and Vit D deficiency are often seen in MS patients. I think the waiting period for being diagnosed is a horrible time. The waiting is extremely stressful but if it is MS once you get the formal diagnosis it opens the door to treatment and resources. Most people hope it’s not but it’s the not knowing what it is that’s causes such stress.

I hope you get an answer soon and that your symptoms ease. June is not too far away now but if I were you I’d be pushing to see the neurologist again.

I wish I could take away your symptoms but all I can do is let you know I’m thinking of you and sending warm (((Hugs))) M

Hi Ally, I can relate. For the last year I have been suffering from chronic migraines with vision loss and seeing colours/shapes as well as tingling down my left cheek, arm and hand. I also developed headaches that are patchy around different areas of my head that come and go and blurred vision that comes and goes. I have also been really fatigued, memory is awful and can feel light headed or dizzy. I managed to get a referral to a neurologist and since I was concerned the neurologist sent me for an MRI scan of the brain and neck. He was surprised to see demyelination and said it was most likely MS. I am now waiting on a lumbar puncture and feeling a bit in limbo at the moment.
Did your lumbar puncture show anything or was it just the bloods?
My GP checked bloods recently and said all normal.
I have had pain coming and going for a long time over the past few years but the neurologist said that would not be related if it was MS as everyone gets aches and pains!

Hi Sage, thank you so much for your reply. I’m sorry to hear your not feeling great and to hear of your symptoms - at one point i felt like i was loosing my mind so i can completely relate to your memory and headaches.
I haven’t had my lumber puncture yet, my consultant just said she wanted one to be done - just the bloods currently showing my <111 b12.
I’m so sorry it seemed like your neuro had a blasé approach - I hope you find the answers you need soon!

I honestly think the not knowing is so hard! I’m such a positive person and I love to be busy and getting on with whatever is at hand and I just feel like I’m stuck in limbo like you are at the moment. :frowning:

I hope your appointment comes quickly and you can move onto the next steps xx

Thank you so much for your reply.

I honestly feel like a sitting duck just waiting to get worse, I think if i were to be on medication at least i’d feel i was being proactive about it all and doing something!
I think i’ll definitely ring her and see if i can speak or email her with my ever growing list of questions.

Thank you again and i’ll try to stay positive! Great to hear your life is really good having managed it well :slight_smile:

Hi Ally

I think one of the reasons is that B12 deficiency does cause lesions that can’t be easily distinguished from MS lesions, and symptoms can be the same.

Lesions are scarring and are damaged bits of the brain. So if the lesions were caused by B12 deficiency, and the B12 deficiency is corrected, it will stop further lesions. However it won’t automatically repair the existing lesions, so symptoms may remain. The brain often does have the capacity to create new connections that can circumvent the damaged old ones, and reverse symptoms, but that isn’t instant. It can take time. With age it can be more difficult.

As you were B12 deficient, if it is in any way connected with diet or malabsorption then you may have other deficiencies, so it is worth thinking about that too. The NHS only checks a few - eg folate, Vit D, iron, calcium, potassium. I presume they have done those. And also checked for celiacs disease. The rest they don’t bother with.

It would be good if the cause was just B12 deficiency, as it would mean no further progression if the B12 deficiency is kept in check. What was the result of the lumbar puncture? Was it normal?