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Diagnosis advice please

Hi Everyone,

This is my first post, I’ve found the forum helpful when doing some research and was hoping some of you may be able to advise me further. I apologise in advance for my lengthily post.

At the end of December 2016 I experienced a severe case of optic neuritis, I lost all vision in my left eye which slowly recovered over a three month period. Because of this I was sent for an MRI and referral to neurology, in March 2017 after seeing the neurological consultant I was diagnosed with CIS, my MRI showed two lesions at that time. I was sent for a further MRI in July 2017. After the second MRI I received a copy of the letter that had been sent to my doctor and neurologist, the letter states that there are new periventricular lesions present and asks the neurologist to see me again to discuss treatment options. On further reading I noticed the letter had also been sent to the MS specialist nurse. I waited for my appointment to come, but heard nothing, so I called to ask and was told I would receive it via post, eventually it came for December 2017, but on the day the hospital cancelled and sent me a new appointment for April 2018. As this is such a long time to wait I am now paying to see the same consultant privately next week.

In October I visited my doctor due to extreme fatigue and terrible migraines - blood tests showed I has a very low b12 and I was given injections every other day for two weeks for this and will repeat them every 12 weeks. They haven’t made a difference to either my tiredness or my migraines. I had bloods done in January and again in March, neither time did they show low b12.

What would be your opinions on a likely diagnosis? Thanks for reading x

Hi Gill,

You have been through the mill, haven’t you? Unfortunately it’s very common to be in limbo for a year or more before getting a clear diagnosis of neurological symptoms.

It’s a good idea to go private as, I believe, you can always be referred back to the NHS system afterwards.

However, it would be highly irresponsible for me or anyone else to give opinions on your diagnosis except qualified neurologists. And I don’t think they come here.

What I will say is, that you have come to a very good place to air your concerns and share your experiences. There are a lot of people here who will understand what you mean and will have gone through the same things as you are.

You can ask for support, empathy and understanding. We’ve got it all.

Best wishes,

Anthony

Hello Gill

As Anthony said, we aren’t able to predict your diagnosis. Clearly as you have recognised, an MS diagnosis is possible even likely. But counting chickens before the neurologist has announced how many you have is a bit premature.

At least you are likely to find out very soon.

Let us know what happens, we’ll be able to help once you either have a diagnosis, or are told that a diagnosis is not appropriate at this time.

Sue

Hello, Thanks both for your replies, I think I was having a bit of a wobble last night when I posted my first message! I’m feeling much brighter today, I think it helped just writing it out! My appointment is next Wednesday so I will see what happens then and I’ll update when I know more. Thanks again, Gill x

Hello, I can only comment on the b12 issue as am still in the testing for Ms myself. B12 deficiency is very complicated so I would advise you look into that further, there is a b12 deficiency charity group in the north east of England who also have a website. Injections should be every other day until symptoms improve then drop down to bi monthly or tri monthly depending on the situation. I have them now bi monthly and take it daily orally. Levels shouldnt actually be retested once on injections as the treatment will almost always give a high reading in the blood.

I saw the neurologist on Wednesday, confirmed diagnosis of MS. He’s now referring me back through the NHS for an appointment with the MS nurse to further discuss treatment options. He also confirmed by b12 deficiency and said this is due to me having pernicious anemia as my body is unable to absorb b12. Lots for me to look into but at least I know what im dealing with now x

Hello Gill

I’m glad you at last have answers. And to have Pernicious Anaemia diagnosed as well will help I hope as you can get regular injections of B12. I don’t know anything about it, but I assume that will ultimately help with your fatigue.

I hope at this point you’re feeling a sense of relief about the diagnoses. Many people do after a period of time in a state of limbo, but later other feelings take the place of the relief. From anger and depression to grief even about the life that has now altered.

This forum is an excellent place to find information and support. I hope you’ll continue to come here for help when you need it.

You will find that there are many factsheets on this website about the various aspects of MS and the MS Trust also has many fabulous factsheets on its website and/or available to order in hard copy.

Sue