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Not yet diagnosed

Hello I’ve been lurking and reading posts for a little while now and this seems like a great place to get advice if you don’t mind me asking. I started with trigeminal neuralgia last year and the long and short is that I’ve had an MRI and a lumbar puncture and am waiting for the results of the LP. I have an appointment with my neurologist next month. My MRI states that I have multiple hyperintensities, excessive for my age (40) and I’m paraphrasing but there is mention of juxtacortical, periventricular lesions and they are inflammation and have features of demyelination (I think that is the wording but it is similar if not exact). I’ve done lots of googling and what I’m hoping for opinions on is if my LP is positive for the proteins or bands they are looking for, is this enough to diagnose me or are they likely to want to do an MRI with contrast, a spinal MRI and a evoked potential test? I’ve looked at the McDonald criteria 2017 and can’t work it out. I have lots of MS symptoms but haven’t told my neurologist about any of them as I’ve only seen him once about the TN and he thought I had TMJD and that he wouldn’t need to see me again. Then he called me with MRI results and told me I had areas of inflammation and that I needed a LP. I guess I’m worried he won’t want to diagnose me at this point which means I won’t be able to get treatment until I have another relapse, which could take years. It’s awful not knowing and I’m sure you understand that I don’t want to have MS but if I’ve got it I need to know. Thanks to anyone who has read this

Hello Betsykitten

Of course you want to know but looking at Dr Google is not very helpful, he can scare the pants off you, but I think that was how you found this site. you say that you have had migraines, my neurologist said that demyelinating disease could be from your migraines. That was what he told me. Also only a neurologist can diagnose MS. You also say that you haven’t said anything to the neurologist about your symptoms, the same thing happened to me I didn’t know why I was even there?

What I would do is start a symptom diary keep all of your doctor or tests letters, don’t look for symptoms.

He will ask you to have a lot of tests some you already have had, the lumber puncture is one test that could help them find if you have MS. It’s not too bad just make sure you lay down for an hour plus drink a lot of cola, and if possible have two days of bed rest then hopefully you won’t get the headache that can happen.

I would try not to look up the different kinds of MS that there is, you will upset yourself. If you want to know about MS ask questions on here, look at the NHS website.

My appointment with the neurologist was fine I don’t have the bands in my lumber puncture, it’s clear, so I don’t have MS but I do have double vision still and is getting worse plus I have weaker reactions on my left side plus the shakes on my left too. The neurologist is seeing me next year (I have the appointment already.)

I hope you feel better soon and you get your worries answered. Kay

Hi Kay Thanks for your reply. I didn’t mention migraines, maybe you were thinking of someone else’s post? I’ve read that a negative LP doesn’t necessarily mean you don’t have MS, so maybe you need to question your diagnosis a bit more? I’ve had the LP a month ago and did actually suffer with the headache for over a week despite drinking caffeine and laying flat. It’s a nasty thing! I wonder if anyone else has any views? Thanks

Oh I’m sorry to hear you got the headache, I know they can last a while.

My neurologist did tell me about the lumber puncture and that I could still have MS but he doesn’t think that I have but when I told him about my shaking he did a few physical tests and that was why he told me about my weak left side. I think he is being careful and gave me an appointment for next year.

I still have shakes and pain in my left hip and I haven’t had a contrast MRI or full spine MRI. I went to my GP about my hip and I went and had a xray they were thinking that it was arthritis, my mum was, but when I saw the doctor he said that it was normal. So why the pain, again it is on my left side. He has given me naproxen twice a day but he has not done any more tests.

He did ask me about the neurologists and when I told him that it could be my tablets he just looked at me saying nothing when I asked about it he said that the neurologist he being thorough.

I still have double vision the neurologist thinks it will get better.

This is about you not me.

You are right that not knowing is a pain, on here they call it limboland. The neurologist may take some time to give you an answer if you have read a few threads you can see how long it can take. That doesn’t mean that yours will take time they just have to get as much information as possible to give you a proper explanation of what you have even if it isn’t MS it could be something else , the problem is that there is so many other things it could be.

Do you have another autoimmune disease as sometimes if you have one you may get another, diabetes 1, lupus, coeliac and under or over active thyroid, there’re but a few, I have two of them underactive thyroid and coeliac disease, so I am on medication and a strict diet of gluten free food. (Which is no joke)

Anyway all the best

Kay

Hello

You’re right about positive and negative LPs. You could have a negative LP and still have MS, but it’s less likely.

As for whether your neurologist is likely to diagnose MS on the basis of your MRI plus a positive LP, it’s possible, but it all depends on exactly what was shown up on the MRI.

I think that the experts can tell the age of lesions on the brain from MRI. If I’m right, then that could show dissemination in time. It sounds like the lesions are in distinctly different places in your brain, so that would show dissemination in place. That is basically all that’s needed for a diagnosis.

There are other variables that are detailed in the McDonald Criteria, other combinations of lesions and positive LP could also demonstrate MS.

It’s a horrible time, waiting for a repeat appointment for results of tests. Half of you wants to be diagnosed with MS, and the other half doesn’t, is afraid of the diagnosis.

We do understand both the fear of diagnosis, and wanting it to be an answer to symptoms. And preferably a variant of MS that will get you some drugs to avoid relapses and the damage they can do.

I do hope your appointment with the neurologist is soon and you get the answer you need then.

Sue

Thank you Sue. Yes I just have to try and not crack up in the meantime!

Hi I have had a few symptoms of ms recently I had bloods done nothing showed up went to gp today and now being revered. I had another fall yesterday that 4 in 2 weeks I have pins and needles and I’m scared