Last reply 1 month ago
First consultant appointment advice

I was diagnosed in October. Ive seen the ms nurse twice but I haven’t met my ms consultant yet. My first appointment with him is this Wednesday. Is there anything I should ask. Any recommendations for the appointment? The nurse said he will want to talk about treatment options.

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jane_watts
1 month ago

@rae87
Hello.
Try have a symptom list & when you experienced these if you can.
Try not let him rush & fuss you.
Mine doesn’t he’s great in that respect.
Yes now you’re diagnosed treatment will be discussed. He may recommend certain treatment he feels will best suit you & your life style.
You may be given time to make a decision over a cpl of days but ,that’s not carved in stone.
Best of luck let us know how it went for you 💜


grandma
1 month ago

Hi @rae87 totally with Jane, you haven’t got much time but make a list. You will not remember when you’re in the consultation, be clear, concise, don’t let him rush you, good luck, and don’t forget your ms nurse is always there for a chat and with ms there’s no such thing as a silly question and they always us!🤞😜😍


rae87
1 month ago

I’ve got a symptom list which thankfully is rather small. After the appointment I was diagnosed at I had so many questions I wish I’d asked. Thanks for your help


stumbler
1 month ago

Hi @rae87 and welcome.

So, you’re diagnosed but haven’t met your Consultant? How did you receive the diagnosis?

If your MS Nurse is correct, you may want to swot up on the present range of Disease Modifying Therapies (DMTs). Then, you can take an active part in any discussion on treatments, confidently stating any requirements you have to fit the treatment into your life style.

Here’s an introduction to the DMTs :-

https://support.mstrust.org.uk/file/store-pdfs/Disease-modifying-drugs-WEB.pdf

A more comprehensive booklet :-

https://support.mstrust.org.uk/file/DMD-Book-Final-WEB.pdf

And a decision aid, which you may find useful :-

https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid


rae87
1 month ago

I was diagnosed by a general neurologist. I lost feeling in the left side of my body and was sent for an MRI scan. I was given my diagnosis and then told I’d be seen by another consultant who specialises in ms. The appointment when I got my results is such a blur. I was given 2 booklets and sent on my way. I’ve been waiting months for this appointment, hopefully I’ll finally get some answers


dominics
1 month ago

@rae87 There are a ton of high-quality resources out there to enable you to educate yourself about the therapies and the current thinking of the leaders in the field about how best to treat a newly diagnosed patient.

There is no such thing as a stupid question.

Doctors are just people that have gone to school for far longer than most of us. They also have hopes, feats and aspirations. Don’t feel inferior. Ask questions, they like an engaged and interested patient far more than a wallflower.

Unless you have a background and experience in clinical trials and data with regards to contextualising risks ALL the data sheets for all the drugs make them sound like they’ll either give you some ghastly illness far worse than MS, or you’ll just drop dead with one sniff. The current treatments are some of the best yet, and a huge leap in efficacy from the older drugs.

Reverse a question and phrase them along the lines of, “Is there any reason why I shouldn’t/I couldn’t/you wouldn’t…” etc.

Good luck.

Best,

Dominic


rae87
1 month ago

I honestly feel like the consultation today was the biggest waste of time and petrol. He barely looked up from his computer screen to answer my questions. Gave vague answers to everything. I have more questions coming out than I did going in. Another scan has been requested, due to the size of a lesion? I feel as informed now as I did 4 months ago when I was handed a booklet and sent on my way. The only real care I’ve had is from the ms nurses, who actually treat me like a person. I’m so angry and frustrated. I’ve waited all this time to be told nothing. My nurse said we would discuss symptoms in depth and have an examination. That I could ask questions about treatment. 🙁


mlgilber1
1 month ago

I’m sorry it didn’t go that well. It took a little bit of time before I found a MS specialist that really took his time with me. Many people I know that go to the same place I do only see their neurologist once a year and only for 15 mins. Mine always spends at least 45 mins with me and so far I’ve seen him 3 times this year as well as the MS nurse a few times. Hopefully the appointment with the nurse is much better.


rae87
1 month ago

I made the mistake of googling nmo. He said the lesion on my spine was long and he would test my blood for nmo, now I’m freaking out massively.


dominics
1 month ago

@rae87 Sounds like you are in good and thorough hands. You can’t change it, unfortunately so conserve the energy you spend freaking out.

Part of being a medic is to eliminate possibilities. This sort of thing, “I am going to check that it is not ‘X'” is something you’ll hear a lot. If it were ‘X’ then as a medic it is likely to influence the treatment.

Another way to look at it is that it is great they are so well trained that they don’t steam in on the first thing they see.

If you have got NMO then, like a lot of the neuro stuff, it may affect you very lightly. It is important to know but don’t assume everything is the same for everyone. It is different for all of us.

Chin -up. It is all scary shitfight stuff at the moment, that is normal. You are being treated in a free healthcare system that has some of the highest levels of expertise in the world.

Best,

Dominic


sewing-chick
1 month ago

@rae, I would repeat what Dominic just said “You are being treated in a free healthcare system that has some of the highest levels of expertise in the world.” But it doesn’t sound like your guy has much expertise to me. A specialist that takes months to see you, barely looks up from his screen when he sees you and doesn’t discuss treatment options with you? He’s rubbish. You have an option to go to your GP and ask for a second opinion, ask on here for recommendations of good MS neurologists within travelling distance of you and go and see one of them. Remember “time matters in MS” so you want to get on an effective treatment as soon as possible.
If you need convincing look here http://www.msbrainhealth.org/perch/resources/brain-health-time-matters-in-multiple-sclerosis-policy-report.pdf


rae87
1 month ago

I feel like I’ve been thrown back into limbo. I can’t take much more of this. My anxiety going into overdrive. I feel so scared. I don’t know why these tests weren’t done months ago. I feel so hopeless again.


stumbler
1 month ago

@rae87 , I can understand your feelings. But this Neuro, whilst not having a good “bedside manner”, is ensuring that you are properly treated.

Get in contact with your MS Nurse and discuss these events with them.


mlgilber1
1 month ago

I also was tested for NMO because one of my lesions on my spine was really big and steroids don’t help me during relapses so now they do plasmapheresis. Luckily I don’t have it and it is super rare so don’t freak out. It’s just like MS, but causes longer lesions and it’s not super uncommon to get a bigger one if you have MS.


rae87
1 month ago

The moment I read that a third of people die within 5 years the room started spinning out. I have a 10 year old little girl that needs me. This wait for results is going to kill me. How long did your blood test results take?


stumbler
1 month ago

@rae87 , be wary of googling randomly. You have to be sure of the source of your information.

There’s this from the NHS :-

http://www.nmouk.nhs.uk/wp-content/uploads/2016/12/NMO-A-Guide_Lo-Res-2.pdf

It suggests that NMO itself is a rare condition. And a severe case of NMO is also rare amongst the cases of rare.

So, I don’t know where you got your figures…………


mlgilber1
1 month ago

I had two tests done. The first one was done at the hospital and wasn’t very reliable my neurologist told me. It took about a month. Then, I had a specialty blood test done and it took a little over a month. Try not to stress. Stress is super bad for MS and NMO. Like @stumbler said it’s very rare. It’s the relapses that can lead to permanent disability and complications causing death in NMO and still it’s rare, but that’s why it’s important not to stress.


mlgilber1
1 month ago

Did they tell you how big the lesion was? Mine was a little over three times the size of a typical MS lesion, but my MS specialist said that people with NMO typically have lesions even much bigger than that. There isn’t treatment really available for patients with NMO, but they’re usually given the plasmapheresis instead of steroids because most don’t respond well to steroids. I never responded well, but loved the plasmapheresis. I had a relapse that left me unable to move or feel my left leg and during the first treatment I could start to move it again and I’ve gained full control. I believe some people with NMO are being treated with Rituxan to help prevent relapses which is why my doctor put me on Ocrevus because both are extremely similar.


rae87
1 month ago

@mlgilber1 he said over 3 vertebrae in my neck. I just wish I’d never looked into it. I’d finally made peace with being told I have ms. Now I feel scared. I wish I could be brave. Google’s my worst enemy. It took me a month to be able to eat, sleep or stop crying after they said ms. I feel like I’m right there again, drowning in a million and one what ifs.


rae87
1 month ago

Had a phone call with my ms nurse. Feeling a bit better. Didn’t sleep at all last night. I have interviews to do at work today, hopefully I can hold it together long enough. Thank you everyone for your support. I’m so scared of falling back into the dark place again.


stumbler
1 month ago

@rae87 , be strong.

We are all floating around in this sea of MS. We can all hold onto one another to stop anyone floating away and drowning.

Stick with us and we’ll save you from the dark place.

And, I’m talking as a 60+ teenager, who has had MS for over 30 years. Admittedly, life now isn’t easy, but I haven’t had the benefit of all the treatments which are now available.

Life goes on and I’m still smiling. And, you can smile too………


rae87
1 month ago

@stumbler thank you. I just feel like I was finally at peace with my diagnosis. Now it could be potentially something else. After I was diagnosed I had a terrible reaction to steroid withdrawal and I wasn’t able to function for almost a month. I lost so much weight that my gp was contemplating admitting me to hospital. I ended up with pneumonia. I felt so hopeless that I contemplated several times ending it all. But I have a daughter and an amazing husband.
I’d got to grips with things recently and I was feeling positive. Now it’s all up in the air again. I never thought I’d be praying for them to say that it’s ms. My mental health has taken a proper kicking recently. I ended up crying at work again. I need a good slap I think. Sorry for rambling


stumbler
1 month ago

@rae87 , it seems everything is saying MS, with a very slim possibility of NMO. The Neuro just wants to discount that, so they can concentrate on the MS.

This is all a lot to get your head round, so feeling overwhelmed is not unusual. Just rest assured that life does still go on.

So, enjoy your amazing husband and daughter and try and get homelife back to somewhere near normal. You do need to eat healthily, to keep yourself strong.

You don’t need a slap, you need a reassuring hug. And feel free to keep rambling, it helps to let it out.


rae87
1 month ago

@stumbler I wish I could rewind to before the appointment when I felt like I could do this. I feel so wobbly today. When I get anxious I tend to implode. I feel sometimes my family would be better off without me. Especially when I’m a sobbing mess. My daughter is 10 and she’s seen me crying way too often.


mlgilber1
1 month ago

@rae87 I’m so sorry you’re going thru this. I know it’s nerve racking. I remember I was in the hospital hoping it was just MS which is crazy because it’s bad enough. It’s good they’re looking into though so if you can properly treat it whether it’s MS or NMO. Steroids have a horrible effect on me which is why they did plasmapheresis during a relapse and they use it in patients with NMO so maybe that’s an option next relapse. There were no horrible side effects. I’ll keep you in my thoughts and prayers.


stumbler
1 month ago

@rae87 , don’t we all wish we could turn back time for a variety of reasons. But, we have to live with our mistakes and life’s other misfortunes. It’s what defines us and our character.

You’re presently putting too much pressure on yourself. Your anxiety and stress levels will be aggravating your MS symptoms, so you do need to try and chill out. There are things in life, which we can’t change, so there’s not much point worrying about them.

You can rest assured that your family would not feel better off without you. They’d probably be insulted to think that you felt that way.

MS or no MS, life is full of ups and downs. Yes, MS will involve a rollercoaster of ups and downs. We have to try and keep the downs to a minimum and ensure that we enjoy the ups. I admit, the ups and downs won’t stop. We have every right to feel sorry for ourselves from time to time. Just try and keep those “pity days” to yourself – have a duvet day or something. The pick yourself up, dust yourself down and carry on.

It’s not exactly how we had things planned, but we can still achieve those things we wanted.

Have a family hug on the settee tonight. It’ll make you, and the family, feel better.


melmel1
1 month ago

@rae87 Keep strong I know what your going through I was told I had ms in October waited months to see the ms specialist thinking we would talk about stages and what medications for him to say he wants another MRI scan a visual evoked eye test and a lumber puncture which is all scheduled to be done in one day at end of Feb , the waiting is frustrating, keep strong you have your husband and daughter to give you strength xxx


rae87
1 month ago

I got home from work, ate a little, sat down to watch a movie and fell asleep. I’m feeling more positive this morning. Still super tired though. Lack of sleep does awful things to me. This page has helped me so much. When I was first diagnosed I looked on here and I got freaked out. I’m glad I came back and checked it out properly


stumbler
1 month ago

@rae87 , I’m so pleased that you’re feeling more positive.

Onwards and upwards, eh! 😊

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