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Second Neuro Visit

I’ve just had my second neuro visit. I saw my MRI scan which is clear - he was careful to point out the ‘hotspots’ and there are no lesions. However, for my possible Optic Neuritis he is sending me to another hospital for Visual Evoked Potentials. He wasn’t keen to label me with either FND or CFS and is looking to treat my symptoms as a whole, putting it down to a ‘software’ problem (rather than a hardware one i.e. something physically broken).

So that leaves me firmly in limboland once more but with possible medication (Duloxetine) and another test. Progress, I hope. Still, I feel firmly guided away from the idea of MS. He explained why a stronger scan or an LP wouldn’t help at this stage (it made sense when he told me but I’ve forgotten the details).My reflex and balance tests were ‘OK’. So…maybe I have to let the idea of MS go, even though a little doubt remains. I’ll do the best I can to focus on improving my health. My CFS rehab course is good, so I’ll put my energies there.

wel done you!

that is a good attitude to be concentrating on improving your health.

enjoy the CFS rehab course

carole x

Glad it went well, Reiki, and you feel that some progress has been made.

Glad, too, that the CFS course is proving to be a positive experience.

I’m sure your positive and proactive approach will help.

Take care xx

Glad it went well missus.

Keep smiling and that positive head. :slight_smile:

mick

I’m very emotional today. The trouble is that if the doctors are right, that makes my intuitions wrong. Don’t get me wrong, I certainly don’t want MS but I do need to know Why, but the neuro seemed keen to steer me away from that attitude and focus on helping deal with the symptoms. I’m very uncertain about the medication after having looked it up, too.

I understand exactly how you feel, Reiki.

Why can’t doctors understand that having answers for why your body is not working properly for you and making you feel so weird and poorly goes such a long way towards feeling better about everything and having a better attitude towards it all?

Treating individual symptoms is ok, so long as they are still working hard on your behalf to try and figure out exactly what is causing these symptoms.

I am lucky in that I may have found some causes of one of my most debilitating symptoms, and now have a supportive team of experts willing to help me re-gain as much quality of life as possible. This has already re-ignited the light at the end of a very long tunnel, and I am feeling cautiously optimistic about some possible improvement in the future.

Had I listened to my Neuro and GP, however, I would now be looking at an infinitely long, dark tunnel with absolutely no light anywhere along it.

I still have a very long way to go to gain any noticeable improvement, and I still have a number of other avenues to pursue, but at least I have some form of hope now.

Never, ever give up, Reiki. You have a right to answers about what is going on with your health right now, so please don’t let anyone fob you off and tell you to stop looking.

Do you have any other medical professionals who would be willing to fight your corner? I was very lucky to have a brilliant physio who, although I am no longer seeing her, has stayed in touch and was the one who pressured my GP into a referral to London. He definitely would not have done that without her persistence. She has also done reports for me for benefits etc, as she knows my situation better than anyone else.

Stay strong, Reiki (which I know you are) and remember - you know your body better than anyone else, and you know when things aren’t right.

Also, if you’re not happy about the medication they are suggesting, go and discuss it with your GP. After all, it is YOUR body and if you’re not happy, then don’t take them.

Lots of hugs and strength, PD xxxxxxxxxxxxxx

I agree with everything purpledot has said. I know you’re a strong lass. Keep your chin up, question everything and keep fighting til you get the definite answer that we all need in the end. Keep coming on here for all the support you need from us and keep smiling :slight_smile:

mick

Oh, bless you both! I’ll keep looking for answers. In the meantime, I’m aiming to do more relaxation and I treated myself to some new clothes :slight_smile: