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Can you beat this?

Hi everyone,

Hope today is being kind to you all, and thought I must share this with you, as

well as asking a question.

Having been diagnosed in the 80’s Wednesday this week was the FIRST time

I seen an MS nurse! Granted in the 80’s there were none, but no one had ever

thought to refer me (not even myself) until 2 weeks ago my gp said he wanted

me referred because of my tremor.

The MS nurse was lovely, spent a hour with him, and he wants me to take

propanalol, so my question is, does anyone take this and if so, how do you find

it?

Have a lovely day everyone, hopefully going out later for a birthday dinner.

Pam x

Hello Pam, it’s odd that you have not seen a nurse until recently. I seem to have been passed by too. Apart from amantadine, I’ve had no drugs recommended at all There seems to be some inconsistency. I wonder what would happen if I were to approach my GP with a whole list of symptoms I have previously thought untreatable? Needless to say that everyone’s MS is different and I’m not complaining about being on a minimal amount of pills, but now you’ve got me thinking. As for the propranalol, it seems to be more for blood pressure and angina, from what I’ve just looked up. It would be up to the individual to weigh up benefits and side effects really. Sorry I can’t give you a more concrete answer but I am quite interested to hear about the variouis remedial treatments around. Best wishes, Steve.

Hi Steve,

I would definitely have a word with your gp about medication to help with symptoms. Its cos my gp has been so good to me about medication for sympton control, that I have never enquired about a ms nurse, but this time he said medication for a tremor with ms needed a consultation with someone in neurology.

I take amitriptyline for nerve pain and baclofen for spasms and stiffness, both prescribed by gp.

The ms nurse said that they use proponalol for tremor, but same as all medication, does not work for everyone, so we shall see.

Take care and have and have a lovely weekend.

Pam x

Propranalol is a beta blocker, used to treat heart and blood pressure problems that’s true, but it’s also given for other reasons like anxiety, migraines and tremors. I took a similar drug, same group for many years for migraines. You may feel a bit light headed at first, especially if you stand up quickly as your blood pressure may fall a bit so be careful but otherwise I was okay on it. You must tell your dentist or any other medic you see that you’re taking it though as it can interact with other drugs. You’ll probably be on a low dose so shouldn’t have any problems.

Take care

Cath xx

Hi Cath

Thanks for that, I also take warfarin so I need to be careful I think.

Pam x

This thread made me chuckle just a little, just because my husband often jokes that he’s stuck in the 80’s (and I think he’s actually quite proud of that!)

But seriously, it does make you realise that there’s probably lots of people that have fallen through that gap, depending on how MS has progressed for them and when they were diagnoesed. I would imagine those people have been pretty much at the mercy of how helpful their GP is! And lets face it, MS is hard enough to handle anyway, thank you NHS for the MS nurses, good to have people there that specialise in the difficulties we can face.

I’m lucky because my surgery has been so supportive - when my MS nurse did contact me, we agreed she would send me contact details in the mail as there was no urgency to make an appointment. I’ve made one call and she was great.

I’m glad you have a nurse now anyhow :slight_smile:

Sonia x

Hi Sonia

I think we would be surprised to find out that quite n lot don’t have contact with the ms nurse, good job that I had a brilliant gp.

Having said that, I am pleased to now have the backup that the nurse gives you.

Pam x

My gp is hopeless, luckily my Neuro is fantastic. 2 1/2 years I’ve struggled in limbo land, I asked for referral to someone close to my home when I got my dx and at my first visit I got to meet him, be introduced to his nurse and a week later the OT arrived at my house and within a further week I had all the equipment she suggested, life is so much better.

It does make a huge difference who you get referred to. What gets me more is that I was dx with a spinal cord injury during this time, I had surgery but no other help, now I’ve got MS even though I’ve got the same dis / abilities, I get all the help I could wish for. I’m still me but with a new label.

Take care everyone, rant over, thanks for putting up with me.

Cath xx

It is such a shame isn’t it? Great that MS nurses are there but shocking that GP’s can be brilliant and helpful or horrible and awkard to deal with.

Admittedly, I can’t say much either way about my surgery before diagnosis other than doctor A. was lovely and doctor B. was a nightmare, talked down to me and gave me horrible medication. But since diagnosis, well, I only had to speak to Dr B. on the phone but she was actually really nice and even looked up contra-indications of a med I was worried about taking.

Dr C. who I’ve known for many years was so sweet when I saw him that I nearly cried, although it was a non-standard surgery moment… I’d just had accupuncture and he was holding my walking stick, dabbing blood spots off my face with a tissue whilst telling me I needed to get a man-bag (as I was struggling to get my handbag over my shoulder) lol and telling me how well I was coping. He also changed my amitriptyline dose and gave me the number for CAB adviser that was in the surgery once a week, perfect gentleman really.

Cath, rant away love, I think we all get frustrated and it’s difficult not to imagine what it’d be like if things were different!

Sonia x

Hi Cath,

You are right, I think it is just the luck of the draw as to what treatment and help we get.

Take care

Pam x

Hi sonia,

Yes, it is a shame, we have one gp in our practice who, in my opinion, if he ever had any bedside manner, then it has upped and left, but my gp has been fantastic, lu ky for me.

Its good for all of us that we have this site and people to listen who truly understand.

Take care

Pam x

The first GP who I saw with symptoms was so lovely. He really listened and referred me to an ME specialist… who then referred me for a brain MRI and so I was on my way to MS dx.

But without that first GP it could have taken much longer. The day I had my LP he phoned me in the evening to see if I was all right.

The day I was going for the results he asked me to phone him and let him know. I phoned and said yes, it’s MS and he was very kind and sympathetic.

Unfortunately I moved out of his area and I still miss him even though my current GP is good.

I’ve never yet met a sympathetic neuro… but I have seen a couple of very good registrars over the years.

Pat x

I think all of us with helpful gps should consider ourselves lucky, as you do hear of some awful ones.

Drizzly rain here, luckily I had recorded some things for a rainy day.

Pam x

When I was diagnosed I lived in Spain…I had the most fantastic GP, an English man…what I wouldn’t give to have him now. I have an awful GP now. My last one, in Worcestershire, was lovely, a very feisty lady who was disabled herself and quite happy to really battle with her other partners if she considered it was the right thing. Sadly the practice I’m with now seem to care little for their patients…it’s just a business. However, I do have a really ,really, great neuro and MS nurse…can’t have it all, can we?! Take care everyone, Nina x

We should all be grateful really, I lived in South Africa for many years and you have to pay for health insurance, but each specialty has a pay threshold and you pay any extra in. There’s no disability / unemployment benefit that’s long term and any short term benefit is so low it’s worthless. You pay for everything.

The state run hospitals are really bad, no test facilities, care standards, food or linen. I’ve seen and read about real horror stories. I’ve even seen ambulances brought in on tow trucks with no equipment at all in them.

At least here we do get looked after, I’m so grateful now that I came back to live here, I came over for a future for me and my daughter, never imagining something like this would happen, and am really happy here. We’re so lucky and that’s what I remind myself about after a visit to my gp.

Take care

Cath xx

So true Cath. I lived in the States for about 9 years. For the first few years I had a job that didn’t give you health insurance, so all the medical care I could get was through charities.

And I was in San Francisco which has some very good medical charities. In rural areas people without health insurance just do without medical care.

Interesting fact: The USA has the highest new-born infant mortality rate in the whole western world. So many women, most of them very young, give birth without any health professional present… simply because they can’t afford one.

Yes we are lucky!

Let’s hope this government never gets its way to move towards the American healthcare system!

Pat x

Hi

I have had MS for 20 years now, I’m a para from the waist down (got me own set of wheels), for the last 18 years have had a great GP who phones me every week for updates and to see if there is anything else she can help me with and I also have a great MS O/T and nurse who have supplied me with every bit of equipment they could think of to make life as easy as possible, anything new equipment wise my O/T rings and comes to see me to talk about it.

I have also had the same Nuro for 16 years as well and all he see’s is people with MS, once your in with him your in for good.

I have found treatment varies greatly depending where you live, I’m one of the lucky one’s with a great team supporting me including my cares without I could not do half the things I do each day their brill.

I’m not going to rattle on about myself any longer I hope the above may just help someone get the help they need, but remember this if you don’t ask how will you know you won’t get. I found the best way is to get yourself an MS O/T and nurse in most area’s you can refer, if not keep on at your GP.

I wish you all well and keep fighting don’t give up and let MS beat you down

Devil