Forum

Making MS nurse listen

Hi

I am due to see my MS nurse next week and am looking for some help on what to say.

Basically I was diagnosed rrms in Jan, made a good recovery from some really nasty relapses. Started on beta-inteferon and have been relapse free since.

However i find my walking is getting worse, now struggle to do 5 mins before my legs go jelly like and like lead weights. My tremor is getting progessivley worse, my sensory problems flare up all the time, I am in constant pain of one type or another and my concentration and memory are, well poor seems like an understatment…horrendous.

I take Gabbapentin 1800mg a day, have tried pregablin did nothing. I am not overweight, I do yoga twice a week, but even that’s becoming harder than it was just6 weeks ago.

I spoke to her about this about 3 weeks ago and she told me catagoricaly it was the heat - no exceptions. I know she is going to tell me it’s the heat again or an infection or basically fob me off…i geuinely feel things have changed…how do i bring this to her attention without being ‘corrected’ ?

Hi,

Sounds like you are going through the mill. I have RRMS and have had it for 13 years, I have it quite mild. When I relapse I usually go to my GP and so have a good relationship with him so he has a good ear for my concerns, every time I see anyone I am investigated for any other illnesses which may cause these symptoms, it may be use ful to see your GP for advice and general health check. My neurologist has an open surgery on a Tuesday morning for drop in patients with no appointments, I wasn’t aware of this for a long time as hadn’t had many relapses, you should check with your neuro’s secretaryand check what provisions are in place for emergency visits and go to see them. Its a tricky path to tread and as its come upon you quite swiftly it imay be difficult to change from being independent and healthy to feeling comfortable accessing the help available. There are also special courses availabe through your MS nurse in Self Management whereby you learn more about your condition and all the services available to you; it is designed to empower the MS masses!

If you are concerned that your MS is too active and changing you could aske for an enhanced MRI scan which gives your neurolgist a clearer idea of what is happening. There are also treat ments for tremors- from my specialist knowledge gleened from Holby City - Canaboids can help. As the weather is cooling down you may find your symptoms abate. It is a massive factor, but keep expressing your concerns and express that the lack of certainty is increasing your stress levels.

Good luck.

Angela

Your lucky to have a MS Nurse. l have had spms for 31yrs - and have never seen one yet! Over the years l have been prescribed some weird drugs that have supposed to help with symptoms. All of these meds were for other illnesses - not ms.

l found they all had side-effects that were actually worse then the ‘symptom’ that they were supposed to help with. Now l just stick to LDN - vitamin d3/magnesium/vitb12/flaxseed/kelp and apple cider vinegar.D-Mannose to prevent uti’s. l also use Sativex at night to help with legpain/spasticity. Along with doing as much exercise as l can to stretch and strengthen muscles.

Gabapentin did not help me at all. lt left me a very 'foggy ’ brain and very weak heavy legs. Last year, l had a very ill dog - who had bone-cancer. The specialist vet prescribed Gabapentin to help with his nerve pain. l did question it with the vet after my experience - and he did agree that there were considerable adverse side-effects. l tried Bruno on it for two-days - but it just made him floppy and ‘out of it’. So l stopped it - as his cancer was inoperable - and we wanted his last days to be as happy as possible before we had to make the final decision.

lts difficult to get anyone to understand ms - unless they have it themselves. And even then we are all so different. So l just try to keep as healthy as possible and stay off meds that can be making me feel worse.

Hi,

Sounds like you’re going through the mill. I have RRMS and have had for 13 years, I have only just been given an MS nurse to monitor my DMD s which I started only last year. My MS is mild. You could raise your concerns with your MS nurse, take a list of your specific symptoms and give her a copy, express that your concerns are affecting your quality of life alongside your symptoms. When I relapsed I sought help from my GP or A&E as I was unaware of how to access My Neurologist in an emergency, as my symptoms worsened I found out more in this regard and found that my neuro has an opene clinic on Tuesday Mornings, It may be usefull to contact your Neuro’s secretary who will be able to advise you in this regard.

It may be worth asking about having an enhanced MRI scan, which can indicate how active your MS is. There are also courses in ‘Self Management’ which are designed to empower the individual through knowledge and availability of services. I haven’t done this as I was working at the time and had 2 young children and no spare energy, it sounds really good though. YOur MS seems to have come on at speed and must have left you reeling and anxious. I had 10 years before I was considered suitable for treatment and so lots of time to think things through.

For fatigue I take Modafinil, its quite tricky to get hold of because its very costly to you prescriber and it works for some but not for others and you have to manage your use as it can become less effective over time, but regains its potency if you lay off it for a while.

As for trmmors I only have night time ones before iI get to sleep, but from my specialist knowledge (Holby City) Canaboids can be effective.

I have wittered somewhat - I am new to this and have done this reply 2 times so far. Hope this gets to you and is of some use.

Best Regards

Angela

The heat can cause problems for most MS users. But I am the opposite. Cold weather destroys my body. Just let your nurse lead the conversation first. Have you been prescribed for DMD’s? If so he/she will talk all about those in this meeting. If you have any questions about MS just ask them even though they might not seem important. Like for example. What do I do if having a relapse? Or eye trouble, Do I call you. You will form a bond quickly. They are a information point. If they cannot answer it then, they will find out for you. BE

I’m not sure this MS nurse sounds very good at her job. You shouldn’t have to be persuading her that things are changing for you - she should be listening to YOU. There are three MS nurses attached to my neuro. One of them is reasonably helpful, one OK and one useless. Sounds to me like you’re seeing a useless one and should try to see a neuro.

Thanks everyone for your help. The relapse clinic would be really helpful but are only done at sister hospital if mine and not available to me because of the consultant I’m under. It’s a bit of a mess to be honest! My GP tries and is eager to help, but doesn’t know how. I will try my hardest to get her to listen next week and if I can’t get through to her then I will ask to see my neuro. It’s not that she is useless just think she has been doing the job longer than I’ve been alive and perhaps thinks she seen it all! But as we all know no two people with MS will ever be the same. Thanks for taking the time. Ps) Angela- bless you for writing your reply twice :slight_smile: