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Good neuro visit!

I usually get less than 10 minutes a year and leave feeling like an idiot who wasted the neuro’s time. Went in this morning with a different attitude. Listed 5 symptoms that have got worse. Told him I wouldn’t waste his time with the million small stuff but could we talk about the 5 on my list. He listened!!! Decided that he gets paid a lot of money to see people like me, so went in with a different attitude… not a quivering peasant intimidated by the ‘big man’… but as intelligent woman with MS who deserves decent treatment. Was in there about 20 minutes (maybe a bit more). Wants me to see ENT specialist about the tinnitus (and seemed annoyed that an audiologist had dismissed me with ‘nothing we can do’). Because I came off Gabapentin because of problems with it, he wants me to try it’s ‘sister’ drug… the one beginning with P. Can’t remember name. Wants me to go back in 6 months instead of year. Came out feeling so much better than usual… like for once I had been listened to and taken seriously. Then I thought 'blimey… he seemed really concerned and want to see me in 6 months. I MUST BE ILL :lol: Came home and had new fridge-freezer delivered. Knackered and in bed now BUT hey, it’s been a good day. Pat x

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Hi Pat Crikey, you’re lucky, I haven’t seen neuro in years :lol: I get to see MS nurse every year though and I have to say she is great and generally able to deal with any probs I might have i.e contacting gp for any any new meds or referals to other people for all the usual ms things. I’ve had tinnitus for a long time as well and my gp sent me to ENT but apart from telling me my hearing was excellent (which I already knew as I keep telling my husband! ) they just said no treatment for tinnitus. So basically get used to it. Mine is not too bad fortunately so I ignore it as much as poss. I hope you havebetter results with any treatment you’re offered. Good luck Carolyn :smiley:

Glad to hear the bold approach worked well for your neuro visit. I was with a bunch of MSers on Tuesday and they all disliked Gabapentin intensely, because of nasty side effects. However, they seemed to be doing better on the kinder Pregabapentin, so hopefully it will be the same for you.

whammel wrote:

Glad to hear the bold approach worked well for your neuro visit. I was with a bunch of MSers on Tuesday and they all disliked Gabapentin intensely, because of nasty side effects. However, they seemed to be doing better on the kinder Pregabapentin, so hopefully it will be the same for you.

AH Pregabapentin!!! Thanks Whammel :smiley: Pat x

queendoodle wrote:

Hi Pat Crikey, you’re lucky, I haven’t seen neuro in years :lol: I get to see MS nurse every year though and I have to say she is great and generally able to deal with any probs I might have i.e contacting gp for any any new meds or referals to other people for all the usual ms things. I’ve had tinnitus for a long time as well and my gp sent me to ENT but apart from telling me my hearing was excellent (which I already knew as I keep telling my husband! ) they just said no treatment for tinnitus. So basically get used to it. Mine is not too bad fortunately so I ignore it as much as poss. I hope you havebetter results with any treatment you’re offered. Good luck Carolyn :smiley:

Hi Carolyn, I was dx in 08 so perhaps still monitoring me? Not sure why some people get so see neuro regularly and others don’t. Maybe it’s down to the neuro or hospital. Problem of course with our PPMS is there’s basically nothing they can do. Pain relief. Symptom relief. That’s it. I’m sure you’re right about the tinnitus… nothing they can do. But I did read on RNID (royal national institute for the deaf) that you should always have it checked out by ENT just to be sure there’s nothing they can so… ie a condition causing it that can be cured. Mine is very loud and disturbing so I’m kinda hoping they’ll offer me one of those ‘habituation’ courses which help you to learn to live with it. On other hand, can I commit to attending a course when I never know if I’ll make it out of bed on any given day??? :roll: Anyway, worth a try I guess… Hope you’re doing well, Pat x

You have to keep it simple for these ‘big wigs’. Pregabalin (Lyrica) was/is better for me, its because so many things are affected by MS we are a lot of trouble BUT that’s what they get paid for. I think they feel guilty that they have so little to offer us (especially PPMSers). Have we said on this new setup MS sucks? And if not why not? Take care everyone don’t let the gorilla/beast get you down, I didn’t even swore but feel free to think any you like! M

I must be really lucky, but then again I set down my ground rules at the first meeting. The first one I got was rude to say the least so I asked and got another one. My next one I told him to be straight with me and tell me the truth… We get on like a house on fire I get an hour sometimes an hour and a half (if next patient does not show). He’s brilliant. He did not laugh at me when I told him I take folic acid in heaps (apparently folic acid very good for the brain that’s why when you are pregnant you get it) nor when I told him honey makes a difference (honey has many healing properties too). We both agree that if you can do without steroids all the better and if you can do without most drugs it’s better less side effects. I’m PPMS diagnosed 2008 and only take gabapentin anti-dep. The rest I get from mother nature and she has a vast cupboard of cures. We get most drugs from plants anyway so why not use them neat. Glad you had a good visit you just have to set some ground rules. MM

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