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New neuro

Hi everyone

Hope today is a good one for you all.

Had a busy old day today, shattered now but happy. I seen the ms nurse a month ago and she said I am going to get you to see the neuro, and had my appointment today. The last one I seen was yonks ago, and he was very patronising and off hand, so I wasn’t looking forward to today.

Well what a surprise, this neuro today could not have been nicer, put me so at ease, just shows how different they can be, and all my bad memories have blown out the window.

He has said that statins are proving to be good for progressive ms, and as my cholesterol is too high, he has put me on them. Anyone heard about simvastin helping? He also wants to introduce gabapentin alongside the amitriptyline I already take, but wants me to add one thing at a time. He also said he is going to write to my Rheumy as he feels the Hydroxychloroquine isn’t working good enough with the swelling, suggesting she introduces Methotextrate as well Asap. Bit worried about so many extra tablets, but I did feel trust in him, so will give them a whirl and see.

After the hospital we went into Gloucester and managed to get some more Christmas presents for our grandchildren, so all in all, a good day, but got to rest now with a cuppa.

Pam X

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Good to hear some happy news, having good support is such an essential when trying to manage this miserable disease!

Sonia x

Sounds like a good neuro you have there Pam it makes such a difference doen’t it?

I only had one that i really liked and he retired,he was ‘old school’ and had such a nice manner.The one i am supposed to see now is ok but not half as good.

I am doing my xmas shopping online like i normally do but cant get motivated to do it,i keep putting it off lol.

J x

Hi Pam,

So pleased you were happy with the new neuro!

My GP wanted me to try high dose Simverstatin …I was on it for several months but finally went back to my low dose for cholesterol…I was taking 80mg a day and the cholesterol dose was only 20 …it made my legs hurt dreadfully and I certainly didn’t feel it was slowing down progression but maybe I didn’t stay on it for long enough? It could also be like biotin which helps some people but not others.

Hope you aren’t suffering too much after your busy day yesterday?

Love,

Nina xx

Hi Sonia

I agree good news gives a boost, which we all need now and again.

Pam x

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Hi Mrs J

Yes, a good neuro really helps, the last one was so patronising and had no ‘bedside manner’ at all.

I do some things on line, it was because we were already at the hospital, and the weather was ok, we thought lets ‘go for it’. It was lovely to be out in the fresh air, lovely coffee and a pasty, and a bit of a nosey round the shops, I loved it, and the feeling of being shattered was so worth it.

Pam x

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Hi Nina

It was Dr. Martin I seen at Gloucester, perfect gentleman, put me so at ease, he was lovely.

I will give these Simverstatin a go, he did mention to keep a close eye on muscle pain especially in legs, but time will tell. I did ask about Sativex again, but still a no with that, unless you can fund it yourself, and that I am afraid is out the question.

Hope you are doing ok and it’s good news after your treatment. Pat posted to say biotin is working well for her and the neuro said try the Simverstatin for 3 months, otherwise that could be next, so we shall see.

Pam x

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I think Dr Martin is wonderful…as you say the perfect gentleman!

My tumour has shrunk considerably from the treatment and tomorrow I go to Cheltenham for a pet scan which hopefully will show that what is left of the tumour is possibly just scar tissue…I’m praying for that because if it’s just tumour left it may mean that they operate to take it out and I could really do without more time in hospital.!

Hope you are as ok as possible?

Take care,

Love, Nina xx

Hi Nina

I have everything crossed for tomorrow and truly hope it’s good news for you, let us know how you get on please.

Dr. Martin is going to change the pain medication as its not working so good, but other than that doing okish, thanks.

Pam x

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Dr Martin always seems to sort things out…I remember when I was feeling permanently nauseous, my GP at the time and also also a consultant at Hereford hospital said it couldn’t possible anything to do with MS but I didn’t agree so off I went to see the lovely Dr Martin and without hesitation he said they were wrong and that I had a lesion on the part of my brain that caused vomiting…he prescribed a tablet called Domperidone and hey presto it was sorted…I have total faith in him!

I hope he lets you try Biotin…I had to stop taking it whilst I was having chemo and Radio Therapy but it had already started to improve my walking beyond belief…and for Pat it’s been like a miracle! During the seven months of cancer treatment my walking became really bad again so I know for sure it was the biotin…the unfortunate thing is it can take up to nine months to work but it is well worth the wait!

My cognitive problems are quite severe but again Dr Martin arranged for me to have a tablet that is normally only used for altzheimers and once again it made such a difference!

Last time I went I saw a different guy…total waste of time! I said to my husband I’m not going again unless they can guarantee it will be Dr Martin!

Thinking of you and really hoping that the new pain meds’ help you.

Love Nina xx

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I so agree Nina, within a very short time I felt relaxed and felt trust in him, and he did say if I try the Simverstatin for 3 months and it worked ok, then he would talk to me about biotin as well.

Horrible weather here today, hey ho.

Pam x