Anxiously waiting a diagnosis and my MRI and Lumber Puncture results

This is my first post. I am feeling in limbo so much right now and am feeling very anxious. Across 2020 I had a huge increase in migraines and general headaches which caused me to go to my GP several times. In June 2020, I woke up one morning and everything was spinning and I had really bad vertigo for two weeks and was sick. In July 2020, three fingers on my left hand went numb and felt different. Around the same time, my face was spasming and felt a bit numb in patches. In September 2020 both of my feet went numb and it felt like they had been dipped in snow. This then went by October. At the time I had started running and thought maybe both feel had a trapped nerve or something.

in October I decided to get a private MRI scan of my Brain as my GP would not refer me to get tests. The MRI came back that I had 4 periventricular white matter lesions and it recommended that I was referred to neurology. My GP referred me finally but non urgently and delayed the referral. Therefore I decided to go private for a initial consultation with a neurologist. He said the MRI indicated inflammation on the brain and it was likely to be a autoimmune disease- this was when MS was first mentioned. I then was slotted into the NHS after a urgent referral was put through instead. The neurologist said that he felt it looked mild and was caught early at the time, but needed further tests to be sure and determine what is wrong.

In December 2020, I was diagnosed with optic Neuritis after my vision went blurred in my left eye with some discomfort. I had some steroids and this has since cleared. I then had a lumber puncture and mri of my spine on the 16th of December. I am waiting for these results still. I have a appointment with neurology on Monday next week to find out finally what is wrong.

I am really worried that they are going to tell me nothing is wrong and I will the feel like I’ve gone crazy and feel invalidated. I know this is irrational and probably won’t be the case after what the neurologists have already said to me. I feel so run down and tired all the time. I keep having weak arms and legs and funny pains or sensations. I don’t know if I’m being hyper vigilant and imagining it. Because the first neurologist said it seemed mild also, it has made me worried that I’m almost a fraud and it’s all not real.

I wish none of this had happened in the first place and I know I am lucky for it to be mild if that is the case. However, now it has happened, I really want a diagnosis and treatment so I can move forward with my life and come out of limbo land and feel validated.

do you think I would qualify for DMD? I just want to know what they found in my spine mri and in the lumber puncture. Did anyone else have to wait 6 weeks for their results?

Hi most people on this site have had to wait years for a diagnosis, i have had ms for 20 plus years, but was only diagnosed last year. If you get answers next week and put on medication you are lucky ( or not if you are diagnosed with ms!) hope you get some answers, take care

Thank you for your reply. That puts things into perspective and sounds like I am lucky in comparison to many people who have waited a long time. Hopefully I’ll find out soon. Thank you!

I am glad that you have managed to make progress towards finding out what ails, despite a GP who sounds pretty useless to me. You are now as well placed as you can be to get that expert opinion from your neurologist, underpinned by clinical and lab information. And if it does look like MS, you are primed to ask the right questions. You can do no more for now.

Good luck.

Alison

p.s. I had to wait weeks and weeks for the LP result, even in normal times. At least I already knew what was the matter by then; the LP was just to make the dx super-secure. It must be harder to wait when you really don’t know what the answer will be. Hang on in there!

Hi Alison,

thank you so much for your message, I really appreciate it. I think the days and weeks just seem so long waiting. But I guess I should count myself lucky really as it sounds like so many people wait a very long time to get a diagnosis.

Best wishes,

E

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