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Confused and struggling

Confused and need advice please

Hi all, I’m fairy new to this site so please bear with me. After a few years of ms type symptoms my neurologist has said he thinks a new set of eyes from a different neurologist is needed has this happened to any of you??? I’m in a bit of a state as I’m not at work atm and I really don’t know what to do. I’ve around 20 legions but spinal was clear 18 months ago. Should I request another spinal or not. Has anyone out there been diagnosed with a normal spinal tap. I’m so very emotional and exhausted. Any advice is greatly received. Thanks in advance

Hi

I’ve just looked back at your last thread and it sounded at that point that you were struggling with your current neurologist.

So actually, a different neuro might be exactly what you need.

It’s possible that your current neuro is uncertain because you have tested negative for Oligoclonal bands. And I don’t think you can test negative for O bands then have another LP with a positive result. But it’s possible that new methods o testing the CSF could throw up differing results. (I don’t know this, I’m just hypothesising.)

And maybe the current neurologist has someone specific in mind to refer you to. Perhaps an MS or an ADEM specialist? Or someone who is more experienced with complex diagnoses?

I’ve seen any number of neurologists over my 20ish years with MS, but not for initial diagnosis. But then my diagnosis was more straightforward: initially told it wasn’t MS (although that wasn’t exactly true), and then following more relapses, that it definitely was - using precisely the same evidence as the initial negative message. (The ‘risk sharing scheme’ had just been introduced so a diagnosis was more valuable - finally DMDs were available!)

So where do you go from here? Is your current neurologist referring you to another? Or do you have to go back to your GP for a new referral?

Whichever it is, I can only think that it would benefit you to see someone different.

Sue

Thanks so much Sue. He did recommend a neurologist whom my go wrote to. Unfortunately the neurologist replied that he thought I should stay with my current neurologist. My GP has written twice to my neurologist as I have been having lots of spasms and twitching. I will see my GP on the 6th July so hopefully he will have had an answer. If not I think I might go privately and give a new neurologist to look over my case. I can’t really afford to do this but I feel I’ve no choice. Thanks so much Sue

If you do end up seeing a private neurologist, try to do some research beforehand. Find a neuro who has both a private and an NHS practice. That way, you can be referred back to that neurologists NHS practice.

An initial appointment with a neuro shouldn’t cost more than about £300 (hopefully less). So it might be worth doing. But when you phone for an initial appointment, make sure you ask what the cost will be up front.

Talk it over with your GP at least you have a good relationship with your GP.

Sue