Thank you so much o really appreciate it, you’ve been great and so positive which has really kept me going. Will let you know how it goes.
Sarah x
Hi Sarah
I’m sure you are there for all of us sugar, we all in similar situations and I know I feel supported knowing I can have chats with the likes of you who really know what it is like when not feeling on top form.
Sending you lots of kind thoughts
Take care and stay strong
Babymurph
Hi to all you newly diagnosed: Lynnette, Babymurph, N and Sarah (plus all the others who are In the same position),
It is a truly horrible position to be in, having just been diagnosed with MS and coming across questions and problems including:
- Why the hell did this happen to me?
To that one, obviously there is no answer. It’s a sod, and no two ways about it being diagnosed with MS stinks. But you are in the right place and (clearly) with plenty of company.
- Relapses and remissions! How exactly is this thing supposed to work? Will a relapse completely resolve or will there be residual damage? How long will it take? Is this a relapse or am I imagining it?
Basically MS will do what it likes when it likes. Essentially a relapse has a new symptom or one which has returned more than a month since the last time. A relapse will include a new or a repeated symptom and last for at least 24 hours. Relapses come in so many forms that it’s impossible to list them. In terms of whether something is a relapse or not, the best person to ask is your MS nurse. It’s not likely that you are imagining things.
- I don’t have an MS nurse! How do I get one? I have a month to wait (or more) before my neurologists appointment, why, and how can I speed it up?
Phone your neurologists secretary and be sweet and nice, whilst also quite determined. (This is a skill you are going to have to learn. Secretaries are gatekeepers. Be grateful and thankful to them whilst being fairly demanding about what information you need.) Ask the secretary for advice on how to get some help from an MS nurse or why there’s a delay in seeing the neurologist to take the next step. If all else fails, ask your GP for help.
- What kind of MS do I have? And why is it important?
Most people are diagnosed with relapsing remitting MS. About 85% (I think) of people with MS are diagnosed with RR at least initially. This is where you have defined relapses and get complete or partial remission from those symptoms. Later on sometimes, it’s determined that your variant of MS is progressive from the outset, i.e. is Primary Progressive. This is where you don’t have relapses, but your disease pattern is gradual progressive from the outset. There’s no such thing as better or worse MS. It’s just that there are lots of disease modifying drugs available for the relapsing kind of MS, but much less in the way of treatments for PP (at the present time, hopefully there will be more in the future). Other people of course start out as relapsing remitting but redefined as secondary progressive later on. This could mean that you stop having relapses at all, or continue to relapse but are in a more progressive phase of the disease.
- What about Disease Modifying Drugs?
People have their own views about this. I urge you to find out what you need to know and make your own decision, helped of course by your family, partner (if you have one), MS nurse and neurologist. A DMD is designed to reduce the number of relapses that you have and reduce the severity of the relapses. There are many DMDs available these days. Have a look at: MS Decisions aid | MS Trust
This will give you some idea of what’s available. But which you choose (or even if you choose to have none), it’s a personal decision and will depend on your lifestyle, what relapses you’ve had already, what is available in your area, and of course, the preference of your neurologist and MS nurse will have some impact.
What you should know is that DMDs do not promise to cure MS or the symptoms, they are supposed to prevent relapses.
- So what about other drugs to help with symptoms or steroids?
Again, there are a wide variety of drugs to help with symptoms, from drugs for neuropathic pain to (sadly not many) drugs to help fatigue, and drugs to help with bladder problems. The MS Trust is an excellent place to look for information about symptoms and treatments. See https://www.mstrust.org.uk/
Steroids are helpful when taken in the early days of a relapse, but they are only intended to shorten the course of the relapse, not to cure it and they come with their own side effects.
- What about physio and other help?
If you’re lucky, your MS nurse will be able to point you in the direction of other specialists, from physiotherapy to bladder and bowel nurses. If you are fortunate to have a local multi disciplinary neurology team, you might find that one referral does the lot. If you have neither, then try your GP.
- Lastly, and quite importantly, there is the question of now I’ve been diagnosed with MS, will I inevitably end up badly disabled and / or in a wheelchair?
No. That is the short answer and more than likely, you will have effective DMDs which limit relapses and their damage. You should also have physiotherapy or you’ll keep up whatever exercise plan you have already (and if you don’t have one, it’s a very good idea to start one).
My story has been repeated on this site many times. I’ve had MS for 20 years and when it started there were no DMDs available. I’ve also been unlucky and once DMDs became available, I’ve had bad drug reactions to three of them (and to have so many reactions that makes continuing impossible is rare), so I’ve spent most of my 20 years without DMDs. And I have had a couple of humdinger relapses. This means I am quite badly disabled and am a wheelchair user. This is not an inevitable future for someone diagnosed today. Another thing in your favour is of course the internet and access to forums like this one and Shiftms.
I hope all of this is useful information, as I said at the start, you are all in difficult places. MS is such a contrary monster that it treats everyone as a special case, so you’re not likely to find anyone else with exactly the same set of symptoms as you. But you are never far away from someone who will try to help on this site, the Everyday Living site is full of people who will help with whatever problem you have.
Sue
3 Likes
Hi Sarah. I am sorry to hear about your relapse and totally relate in the not knowing when or what to expect from it etc. My leg relapse happened a good few months ago in that I thought I had a trapped nerve, tightness, pins and needles and numb to touch. It went but I get intermittent sensations of heavy legs and pins and needles when I walk which does scare me that the damage to sheath is there.
I was told by my neuro my ms nurse would be in touch to talk more in depth regarding dmd’s before lumbar appt. When he wrote the different meds down he briefly ran through each one but all I could think was surely it should be him deciding as he’s the professional? Now however I know why they do it. Each one of us is different and will look at the side effects etc with different views and so the final choice to ward this off and fight a little is our choice.
I have found this site my saviour in that talking to people and getting opinions, stories is helpful.
Babymurph, you sound a lot more positive and great to hear your gp was understanding and supportive. Don’t think I will be able to get in to see mine before Wednesday as I’m at work and already having a few days off for hospital appts and will need to tell boss tomorrow I will be off next Wednesday for lumbar puncture. Glad you’re picking up again : )
Sue, thank you ever so much for the information and sharing part of your experience. It really does help and you sound like a strong woman which I aim to be again once I have sorted my head out. Feeling more positive to what I was last month.
X
I had an ENT appointment today. This was the original reason I had an MRI, surgery 3 years ago for tonsils out and coblation on a lingual tonsil at base of tongue that keeps growing. It’s grown again hence why I was back and where a part of brain had shown on MRI of neck resulting in alarm bells and full brain MRI, referral to neurology and things adding up and where I am today with diagnosis of rrms.
Anyway when consultant put camera through nose and checked base of tongue he said I had pooling as well which is associated with swallowing and this was a characteristic of ms too? Not really heard of this one so will be talking to neuro next week to understand. He has said he will do a coblation on this but said there is a risk general anaesthetics can bring on a relapse? And so if I don’t want it that’s fine and to cancel. Something else putting the ball in my court : /
x
Hi Lynette
I can proper relate to the heavy legs, it’s the one thing that totally scares me and I seem to have frequently as well as stiff legs all the time and struggle to walk which seems to have gotten worse!!! I’ve only phone MS nurse off my own back with number my doctor gave me and she says I’ll get properly referred after my neuro app! I’m guessing maybe if I had been diagnosed by NHS I might’ve been referred already!! Finding all this so frustrating. I’m off work and just scared the longer I’ve been waiting the more damage is being done!! Fingers crossed for a week on Friday for me.
Sarah
Thanks for info regarding meds, I will read up and go with a fair idea what I want!
Sarah
Hi Sarah, I hope you are feeling better today?
I am exactly the same in that I feel the longer I’m without meds the more the disease is manifesting at full force. I know the meds won’t get rid of it but I will feel better knowing I’m fighting it as best I can.
Have you been told what meds they feel may benefit you? My neuro wrote 2 tablets (Tecfidera and Aubigio), Lemtrada which is infusion and a few different Beta Interferons (Avonex, Plegridy) and 2 I can’t figure out his writing but think one is Copaxone.
Heres a link to description of DMD’s with great info on them for statistics, side effects, dose etc I hope this helps you a bit. I hope it works.
I also started taking Vitamin D3 the other month which I got from Holland and Barrett.
Lynette x
Hi Lynette
i phoned MS nurse, she basically told me that stress doesn’t help, well I am totally stressed! Told her I was struggling and confused. She said the neurologist will discuss the meds with me and then i will get referred to her to discuss further and order them. The neuro who diagnosed me just said there was 2 to try, if one doesn’t work then will try me on other one! So none the wiser but I’ve got that booklet so going go prepared! Just hope not long til I get MS nurse app and get started!!! She seems to think I’ll feel better after next Friday seeing him!
I take vitamin d and also magnesium and vitamin b12. The nurse mentioned vit d today and said get plenty fresh air in daylight. As I’ve said before it’s my heavy legs getting worse that’s bothering me, am going to ask neurologist if he can prescribe something to ease it off a bit!!!
Thanks for your reply, hang on in there that’s all we can do.
Sarah x
Hi Sarah
I have heard too that stress can trigger but think it’s so hard to avoid it in the beginning when we are floating between tears, talk of meds and not a clear understanding of what happens next.
I have still heard nothing from my ms nurse after my neurologist said she would discuss meds too if I wanted before next appointment. Can’t see that happening since it’s next Wednesday : / but I have found this site and ms trust site precious in speaking to people and the leaflets of information they provide. Would be so much easier if our neurologists could say “this is the medication you’re going on” but now understand why they give us the choice too as every one of us is different.
I am really sorry to hear you are still having problems and hope you pick up soon. It really is so much to get your head around and try to understand but I’m finding each day that passes I’m slowly getting positive again to a degree. It’s a bit like a rollercoaster and then it hits that I actually have rrms line a bolt out the blue.
Stay strong and hope you too get more answers next week x
Hi everyone
The leg I had the trapped nerve sensation relapse with a few months back has been playing up today. It’s been tingly and that horrible tight sensation before you get a cramp but been like that all day. Assuming it’s stress related because of love tomorrow?
Still new to all this with sensations etc or if it could possibly be a relapse? It has not been 100% since relapse, probably 95% better as since I will get pins and needles if I walk a bit
Lynette
Hi Lynette
Will be thinking about you and your apt tomorrow sending you lots of kind thoughts your way, you must let me know how you get on, I know you will be great but would love to hear from you at some point afterwards.
I wish I had the knowledge to help you with your symptoms today, all I have is if you can keep your chin up stay strong you will do great, (I know easier said than done) but you a tough cookie, and a very positive one which will help you through this episode.
I too have made a little progress thanks to my GP, I have an apt to see MS Neurologist tomorrow, keeping my fingers crossed there will be some medication out there for me with having 2 auto immune diseases (other disease so rare no meds out there to help me) so staying positive they can at least help MS.
Stay Strong Lynette will wait to hear from you
Take Care Sugar
Babymurph
Lynette
Think it’s the not knowing that’s the hardest! I’m really struggling with the heavy stiff legs, if I could just be able to walk properly I’d be more positive! Roll on Friday for my appointment and hope he gives me something to help!!! I’m like you, is it a relapse or not?!
Sarah x
Lynette
Good luck tomorrow x
Hi Sarah
Will be also thinking of you for your apt on Friday, please let me know how you get on, like Lynette I know you will do great and fingers crossed you get something to help with your walking, its so frustrating and upsetting when your symptoms affect everything you wish to do,
You will get there Sarah sugar you a fantastically strong person, and hopefully you will have better understanding of what’s happening to you after your appointment, I feel we all have a lot to learn about condition and how it affects us but I’m so confident we will get there together.
Sending you lots of kind thoughts
Take care
Babymurph
Thank you, here’s hoping, will let you know xx
Hi Babymurph and Sarah
Thank you so much for your kind words, it means a lot.
Babymurph that’s great you got an appointment tomorrow and hope you get some answers. Please let me know how you get on? It’s some journey we are all on and trying to find our answers at this early stage and how this works.
Sarah, it’s the not knowing what is and isn’t ms related or relapse etc I’m really sorry to hear it’s affecting your walking, I hope that you get guidance and a bit more information Friday when you have your appointment, let us know how you get on?
You both sound like strong people and I really think the support on this site and sharing experiences doesn’t make us feel so alone.
Lynette x
Hi Babymurph
How did you get on at appt?
That is the lumbar puncture out the way thank goodness : ) No headache although bit of a sore back but will get there
x
Hi Babymurph and Lynette
Feeling a bit more positive after Neuro appointment, he gave me a course of steroids as said my legs getting worse has been a relapse. I’ve to get another MRI scan which is meant to be very soon in order to see how active the lesions are in my spinal cord before he decides which meds best! There’s another test he wants do, not lumbar punctur but something in my arm I think for fluids! Mentioned a few meds including ones I’d need infusions in hospital and I’ve had a loss of blood taken to test for all sorts including Lymes disease and loads stuff I’ve never even heard of!!! Hoping things get moving quicker, he promised me he would get letters written today for MS nurse, physio and MRI and he would see me soon. And apologised for ridiculous wait and he totally understood why I went private for diagnosis! He works a Saturday and has managed to reduce waiting from 10 to 6 months for referrals! Feeling loads better and think I will be in good hands!
Hope yous doing ok
Thanks
Sarah x
Hi Sarah
Glad you’re feeling a lot more positive and things are now moving along for you. I think for us being at the start of investigations and that it is a slow process of answers coming together. Well it certainly feels long when at the beginning as we just want answers as best we can but know how overstretched hospitals are.
I had my bloods taken on Wednesday after lumbar puncture then another brain MRI and spine one in 2 weeks.
Did you get a list of meds to research? I was under impression my neurologist was doing lp and what med I would go for would be discussed then but I had a young guy do it so can only think my neuro is waiting on all tests before next appt.
I had come down to 2 from list between Tecfidera and Lemtrada. Seriously considering the Lemtrada which he also wrote in letter to my doctor.
Really am glad you feel better now and that now you are on steroids your symptoms will lessen soon and you feel better.
Lynette x