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Okay so I am confused. Help! Advice needed.

Hello

Okay so results are in and no evidence of de mylenation on my mri.
I have all the signs of ms but no evidence.
I am now being pushed to a clinic to do with neuropathy possibly and optic neuritis as my eye pupil is large in one eye and small in other. Even though no visual issues and had eye test and all good

What on earth do I do. Omg I am so stressed out with this whole thing.

I don’t know what to do. This is just a nightmare.

Help!!!

Oh Suzy, I am sorry. Sometimes not getting an MS diagnosis is worse than getting it.

It’s difficult to know what to say. Has there been any mention of Functional Neurological Disorder (FND)? That can manifest with very similar symptoms to MS. Perhaps you’ll find it mentioned at the neuropathy clinic? Meanwhile have a look at: What Is FND - FND Hope International

The problem is that there are other diagnoses that very much resemble MS. I do hope that eventually you’ll get a definitive diagnosis. Maybe even some treatment?

Sue

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Hi Suzy
Might be worth pushing for a Lumbar Puncture (LP) aka Spinal Tap. A bit old-school compared to fancy MRI’s but will detect changes in your spinal fluid which will be indicative of MS.

With RR being the most common form of MS, they look for inflammation but if you have Progressive MS, inflammation is harder to catch.

Despite having what is evidently Progressive MS since 2016, my diagnosis was only confirmed in Feb 2021, so the Doc lacked history and put me on a “wait & see” treatment plan (i.e. f-all) with a 12-month follow up whilst I continued to deteriorate. I kicked up a major fuss and threatened them with the N-word. No not THAT N-word, the other one. Negligence. They ignore my symptoms at their peril. Upon which, they called a case-conference and now I’ve had another MRI, a LP next week and other stuff as well.

It may not be native to your personality but if you don’t think you’re getting the right treatment, tests or diagnosis, cause a stink! Do some scientific research too to toss back at them.

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Thanks sue. It’s a living nightmare honestly. I have had heart checks asthmas tests bloods everything and this was my last hope they would find an explaination for this nonsense that’s happening to me. Randomly go half deaf snd hearing clinic dismissed me. I just want to sit n cry. Had enough

Thank you. Could be worth a chat. I just seem to get worse snd at what point do they listen

I think Graeme is on the right track - LP is a good idea. Plus maybe more MRI scans, full spine plus contrast (if not done before).

Sue

I had quite an unpleasant exchange with my MS Nurse and she threw out every objection she could think of, why they weren’t doing this and hadn’t done that etc. Because I’ve done lots of research & reading, I was able to counter her arguments one by one. I’m sure she meant well but was very “procedure driven”. So eventually I said “I would like to state for the record that I am formally requesting X, Y and Z. If one of these things throws up an answer that so far you have missed, that would make you and the team Negligent”. At that point she backed down and referred the matter to the MS Consultant who then ordered a full case review. Effectively the MS Consultants in our Trust have been using the MS Nurses as Gatekeepers to keep the patients off their backs. I take no pleasure in “winning” the argument - I have one body, this one, and one life and won’t be fobbed off!

I deplore their attitude and hope you have a more can-do mentality at the Trust you are assigned to.

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Thanks all. I really need to fight this. My life is falling apart in front of me and every single doc is just saying it’s the brain. Now they done brain and it’s not supposedly. Read up on ppms snd makes sense I suppose. But why are they not picking up on this