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Saw the neuro today

So today after an 8 month wait I finally got my second visit to see the neurologist to get the follow up from him after he had had a chance to check my old records that go back over the 40 years I’ve been having neurological symptoms, and looking at my one and only MRI scan that was done 15 months ago. The neurologist is a really nice guy. I liked him the first time I saw him - really straightfoward, no God complex, human without being patronising or too ‘nice’. Treated me like an intelligent adult. Sadly he is retiring soon.

He can’t give a diagnosis. He thinks he probably never will be able to reach a diagnosis. Said it may be ‘Ziona’ disease. Apparently in 10-15% of neurological patients they can’t give a name to the syndrome that is affecting them, even though there is no doubt it is neurological, because it doesn’t nicely tick boxes of the common syndromes they do know and have described and have names for. So I’m currently Syndrome Without A Name SWAN (which is different from medically unexplained syndrome MUS). He says they just don’t know enough about the CNS and that the equipment they have (scanners, emgs etc.) only gives a tiny glimpse into the workings of the CNS. I do have dystonia, that is definite, and was diagnosed 10 years ago but we don’t know if it is secondary to my other issues or just coincidental.

I’ve found this latest 8 month wait the hardest of the lot, I have to say. Anxiety and depression really started to set in. It is 3 years from the start of this most recent episode, over 40 years from the original start. Covid has made me much more isolated from friends etc which hasn’t helped. He has ordered another brain MRI so we can ascertain the speed or otherwise of changes. He’s also ordering a full spinal scan. I’ve only had a cervical spine scan.

Before I went I had decided that I can’t take the delays any longer - long waits between doing very little. I had wanted to throw in the towel and walk away after this visit. Yet at the same time I did want another MRI scan just to see what the rate of atrophy was, so I can get an idea of how quickly things might be changing, and did want a full spinal scan. That is what he decided too, without me even having to ask. I just hope that this latest wait for scan and results isn’t measured in too many months or years.

As I had been effectively left to treat myself over these 3 years I’ve done a fair bit of searching of medical papers on what sort of supplements and herbs might be helpful for any neurological condition, and figured out that there is a great overlap regardless of condition, so decided on some that were probably worth trying. He knows the things I am doing and said keep on with them. They know about these supplements but are not allowed to tell patients about them.

So the waiting game goes on, but I’ve decided a stop point. After this next MRI that is it.

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Hi Ziola,

Glad you got to see the neurologist today and even better your comfortable/trust him.

You’ve had your neuro issues much longer than myself but I’ve been in a state of limbo for the last three months, so I can imagine how you feel - definitely relate to the anxiety & depression part, thankfully over it for now though, feeling better.

The neuro seems to provide you the best info he can and is being real with you. Interesting you say they don’t know much about your condition because of tech / scanners etc, and I’d never really thought about there being undiscovered viruses - it’s a good point.

What supplements do you take? I’m new to supplement game myself but vitamin D has been great for me so far , I swear by it.

Anyway, I’m just blabbering on now but just wanted to reply to you - you replied to me a few weeks ago and it really helped / contributed to getting me out of bad spot mentally.

This forum is a real help.

Take it easy and keep us updated