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Neurologists

Hi everyone hope you are doing good.

can someone tell me if they think it is a must to see a neurologists?

I have had a really bad time with my neurologist and I haven’t seen him for over two years and I have not seen a ms nurse for over four years. I’m not on any treatment, I’m just on medication for pain, vertigo, and other symptoms.

Im not on any kind of treatment because I keep being told that because I secondary progressive ms there is no treatment available.

I would be grateful for any advice.

thankyou

sam.

Hi Sam,

I personally think this is a matter of personal choice, and that you do not “have” to see anyone about anything, unless you wish to.

I am still officially RRMS, but like you, only on symptom relief, not DMDs.

I have often wondered whether it’s pointless to keep going, as I tend to get very stressed about the appointments, even though my neuro is nice.

I do not think it would make a whole lot of difference to my life if I stopped going, as we usually just chew the fat about a few things, before deciding to leave everything exactly as it is! So really, I only go to keep on the books in case (1) anything changed drastically on my side - even though he cannot fix it, he could refer me to appropriate support services, like pain management, or occupational therapy, or whatever, and (2) in case anything changed dramatically in the world of treatment, and he was suddenly able to offer a much lower risk, more effective treatment than anything hitherto on offer, and that would be good even for someone who hasn’t had a confirmed relapse in years! (Yes, I know - I’m still RRMS, yet apparently not relapsing, so drugs to prevent them wouldn’t be much use in my case!)

So I do feel, really, that most of the reason I go is just “playing the game”, in case I might ever want anything from them, but not because I’m really finding it of personal benefit.

So what about you? What do you want? I can’t tell, from your post, whether you’re upset about not having an appointment in two years, and feel you’re missing out, or were finding them pointless and a nuisance anyway, especially if you didn’t get on that well with him.

No, I don’t think it’s a “must” to be routinely monitored, especially if you have a progressive type, and not much can be done. Your GP should be able to cope with symptom relief. Your neuro presumably can’t think it’s a “must”, either, if he hasn’t called you in two years - or did he, and it fell through for some reason?

Are you asking whether you should push to see him? My answer would be: “Only if it’s bothering you.”

Tina

x

Sam,

In addition to the advice given by Anitra, all I would suggest is that you re-establish a relationship with your MS nurse, even if only to say hello and make him/her aware that you are still there. In four years your previous MS nurse may have moved on and you may have dropped under the radar of the Neurology Nursing service in your area.

I am not particularly worried about seeing my neurologist as I have PPMS, but I would feel disconnected from the health mothership if I did not keep in touch with my MS nurse. She is very helpful and has come up with many useful suggestions. When I had my PIP reviewed recently, she wrote a supporting letter. She also suggested some medication for neuropathic pain which has made quite a difference.

I appreciate that it is a personal matter and I can only report what has worked for me.

Best wishes

Alun

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Hi Sam

I am SPMS, diagnosed nearly 10 years ago, and my neuro discharged me as there is nothing he could do.

I would echo what Alun has said, my MS nurse is a lifeline. My GP is helpful and supportive but lacks the familiarity with MS and its vagaries that my nurse has.

However Tina has also got a point, do what’s best for you. We all have to manage this in the way that suits us best.

Good Luck

Anne

Hi Alun,

Hope you don’t mind me gate crashing on your conversation but what did your MS nurse suggest for neuropathic pain? It’s one of my little challenges at the moment.

Thanks

Anne

Anne,

My MS nurse suggested Gabapentin. I have a specific area of pain down my right leg and it had become a constant irritant. I take between 300 and 400 mgs three times a day and it has worked for me. My GP prescribes me 300 and 100 mg tablets and he lets me self-medicate within certain boundaries. Dosage increases should be stepped up in small amounts. I believe the highest recommended daily dose is 3600 mgs so I am not taking a huge amount at the moment. If I find I regularly need a higher dose then I will speak again to my GP.

It is not a perfect remedy, sometimes it negates the constant pain and at other times it reduces it to a dull ache.

I did think it was muscular-skeletal pain at first, but it did not respond at all to conventional painkillers.

I hope this helps you.

Regards,

Alun

Is it possible to get to an m.s. nurse without seeing a neuro?

You could do worse than take look at low dose naltrexone and see if you think it might help.

http://www.ms-uk.org/files/choices_ldn.pdf

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Thank you for your reply Alun.

I have tried Nortriptyline and am now on Pregabalin. I knew about Gabapentin, I believe it is the predecessor to Pregabalin.

I was wondering if there was a new kid on the block.

Kind regards

Anne

You could ask your GP if they know of an MS nurse. Locally to me there’s a community neurology unit. They have a wide variety of specialists, not just for MS but all neurological problems (stroke, Parkinson’s etc). There’s physios, occupational therapists, an MS nurse and there was a bowel & bladder nurse but not at present. If there was a unit like this, that would be a contact point. Otherwise, I first heard about my MS nurse from the neurology nurses at the hospital. So I should think there’s a way of getting in touch with a nurse without having to see a neurologist.

Sue

I appreciate your sincerity in recommending LDN, Derek.

However, I remain an LDN sceptic.

Anne.

At the top of this MS Society webpage there is a ‘Near me’ tab, you can do a search of MS nurses and MS neurologists in your area.

Nothing wrong in that Anne and it’s fair to say it doesn’t work for everyone, but I have been doing well on ldn since 2004 and it’s not like there are any alternatives for progressive types. Worth checking out, that’s all.

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Thanks for this Lenney, I didn’t know it existed.

Anne

One thing you need to watch out for when using the “Near Me” feature is that it is not always up to date.

As an example, the key neurologist listed for the hospital I attend retired in 2009!

One way to find MS neuros, is to look at the “local” private hospitals,and if you can identify an MS specialist, do a search on his/her name. That will usually pull up the NHS hospital that they work at. It seems to work for other specialities as well.

Geoff

Neuropathic pain - Gabapentin 3.6g daily (2x600mg x3times a day). It takes the edge off most of the pain. I still get mild burning sensations in my arms and legs.

I find when i have seen mine i feel worse lol. You just get the same dialogue, nothing they can do, so i just trust my GP now as she is brilliant, and will support me in any meds i need. MS nurse is miles away from me so pointless. My nurse at surgery knows me really well, and also is good and supports me with my urinary issues.

I think like others have said its up to you really. I know people who were diagnosed 20 years ago even more, and never seen one since or had recent tests and they are getting on fine.