Last reply 5 days ago
MS nurse…….. Help needed

Would love some help and advice, especially from anyone living in Staffordshire, about their MS nurse services.
My wife got officially diagnosed with, and I quote, very active RRMS a month ago and during the diagnosis with the consultant there was an MS nurse present who said she would be seeing my wife in a couple of weeks for her initial assessment for treatment. That was a month ago and we’ve heard nothing. No letter, phone call, email, nothing. We’ve tried calling and emailing but no response and now I feel my wife’s condition is getting worse. In the last 24 hours her speech has worsened and her face has dropped on one side (the same symptoms as the first relapse that started all this)
We feel completely let down by the NHS at a point where we need them the most, especially as this is all new to us. It’s almost like they gone “here’s what’s wrong with you now **** off”
My only thought is that we go to PALS for advice but in the short term would love some soothing voices while I lie wide awake at 3:30am.

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jamoranto
6 days ago

I don’t know what to say Kevin. Your voice is heard by money people here.
I just don’t know what to say to you. I don’t understand your question.
Go to your Dr and get professional advise.
Best Jorge


kevin1786
6 days ago

I guess I just wanted to hear other people’s experiences but thanks anyway.


highlander
6 days ago

@kevin1786
Hi your pretty much on the money with using PALS…. that’s pretty much what I had to do…

Pester pester pester, that’s all I can say. Become a nuisance. If you have a direct number for the MS nurse then block up the answer machine with messages. If not, then the neurology department at the hospital. It can be sooooo frustrating, but don’t give up. This is a recent rollercoaster that’s been forced on you, and yes you will find that it can be like swimming upstream, and it can feel like you are being totally forgotten about. But the good news is, there ARE treatments out there. That do work. So be persistent and get your wife onto the “machine” that will ultimately get her the right treatment.


itsmewithms
6 days ago

This is a global forum so I can only compare to the treatment I have received in the US. Whenever I call the MS nurse that my Neuro has and report a symptom that has lasted over 24 hours he relays that back to my Dr. He then contacts me back for next steps.

For example- I left the message yesterday that the vision in my left eye is blurry. It seems like there are blind spots but I will need a visual field test (I have had several through the years so am getting to know when I need one) to determine how bad it is. My right eye is the dominant eye so I can still see fine to drive, read, etc. I think if something fast approaches me from the left I won’t be able to manage it well without turning my head.

I wasn’t too worried about this but called and reported it as I am told to. Since it involves vision my Dr takes it very seriously and wants me to have an MRI of the brain ASAP with extra focus on the optic nerve. It is now scheduled for Monday morning.

I was surprised he wanted me in so fast as I had gait and balance issues that developed in June and the MRI had no active lesions so he would not prescribe the Prednisone/steroid course. He (and a second opinion at our leading medical facility in the US) feels I am moving into SPMS and moved me from Rebif to Ocrevus. I had the second part of the first dose infused yesterday.

It is important to receive the steriod treatment to shut down the inflammation to feel better sooner. There may still be debate if it limits the amount of damage the lesion will cause versus just shut down the activity. At that point I really don’t care…I just want to be able to see again- now! or walk again – now! and that is what the prednisone did for me…I can see in others posts that it didn’t work well for them so apparently it isn’t a cure all-

Others have reported that they received steroids and they didn’t help so we asked how much they were receiving and it was a small fraction of what I received and given in tablet form. It could be that the dose they received was so low it was only a nuisance and not a cure. I had an IV placed by a nurse and then 5 balls of prednisone that would be hooked to the Iv (one per day) that I would handle at home. I just had to sit quietly for an hour, flush the line and hook it up. After the 5 days of the IV prednisone I would pull out the IV (it just slips out) and place a bandaid. Then there as a tail off pack of pills for the next 5 days.

Looks like this:
https://infuserveamerica.com/104/elastomeric-pumps/

From the article on steroid treatment some of the doses are listed for comparison:
The most common MS flare treatment is 1 gram of intravenous (IV) methylprednisolone (Solu-Medrol) daily for 3 to 5 days. It’s a liquid steroid that’s slowly dripped into your vein through a thin tube. Your IV treatment is also called an infusion.

I would only be given this if there was an active flare seen on an MRI…so that was always the first step to kick it off. I remember having at least 3 attacks that were treated this way over the years…maybe 4. They worked very well for me. I’d really push on any contact lines you have with her Dr for resolution. I’m not sure what DMT she is on but they usually have nurse lines available 24×7 to check in with and they may also help apply pressure. I think they are very motivated to keep her on their drug so want it to work and for her to be well. Use every avenue you got…It sounds like you are a good advocate 😉 push on


stumbler
6 days ago

@kevin1786 , another vote for PALS. My local team are quick and efficient.


kevin1786
5 days ago

Thanks all. It is very frustrating as we’ve had to complain to pals along every step of the way so I guess they’ll be receiving another call from us. I might be on first name terms soon.


shelleb
5 days ago

[email protected]
I’m also uk and was diagnosed may this year with highly active ms after loosing sight in one eye. I have to say initial treatment was great but have just been left to it since. Ms nurses I think are just too pulled out and my own gp doesn’t understand ms. I would head A&E if you wife hasn’t had anything yet I would have thought steroid treatment at least. A&e can liaise with your consultant.
Hope you get news soon x


vixen
5 days ago

Hi @kevin1786, it’s great that you’re here for your wife. MS can be a terribly isolating experience for folks and their partners. It’s tough that we have to learn to become our own advocates with MS, so your wife is lucky you are helping her with that.

If it were me, I would go back to A and E, on the grounds that these are the same symptoms as a stroke. As we know, it’s likely not this, but the delay by the hospital in monitoring your wife- or clearly explaining how she needs to monitor herself – could have been what has contributed to this dip. Anyone on this site will tell you of the impact stress has on us, and it’s vital we are shown how to manage this until things settle down.

People use this site from all over the world and yes, we are very fortunate that we don’t pay for our MS treatment and services in the U.K. but the service is often shoddy, and patients effectively left abandoned and dangling, especially after diagnosis.

You have lots of support on this site. So keep tuned in. And keep fighting, this is your new mission! X

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