Hi Lynette,
i feel better in that I’ve actually seen someone and I tried 3 times with MS nurses and felt I just had no one. I mentioned steroids and she never took me on yet he took one look at me struggling and wrote prescription there and then and was full of apologies at being left! My partner was saying I should maybe have went to my doctor but it was him who gave me MS nurse number and said if there’s anything go to them as he’s reluctant to be involved with prescribing etc!
He mentioned a few of the DMTs, one beginning with F, Tecfidera and think Lemtrada as he said about going into hospital for infusions and would be once a year, think I’m right not got book on me! He was lovely and I’m quite confident he will match me with the best one, he’s foreign and although I understood him I really had to concentrate on the way he was telling me and so much info! When he said about another MRI scan I thought he is doubting the diagnosis about it being RR but he assured me it’s only to see where the active lesions in my spine are and how many.
I didn’t really sleep last night, hands legs and toes tingling, was shattered but wide awake, is this the steroids working? Legs seem be better already!
so much to take in but hopefully now I’ve been seen I won’t be so much in limbo and letters will start to arrive regarding the next step!!
Sarah x
Lynette
Thanks for keeping in touch, good for me hearing you at same sort of stage with bloods, further MRI and wondering which drug!
We can keep each other posted how it’s going
Many Thanks
Sarah x
Hi Sarah
That is great that you are noticing a difference already being on steroids. I haven’t been on any yet due to not knowing before and putting it down to other stuff but have heard they can get the energy up on autopilot so maybe why you struggled to sleep?
I was the same with having another brain MRI after 6 months but mine too said it’s to see if there’s any new and he wants a couple more different angles of brain. Spine one will be my first but that’s to see if there is any there too.
Yeah the Lemtrada is the one done in hospital one year apart. This website has a great page of the dmd’s, risks with each one and % rates etc
We were out today so a lot of walking done. Sensations freak me out as I know it’s the ms, like tingling after I walk for a bit but it will disappear. But pretty achy especially my knee now I’m back home and relaxing. But then I think to myself as I did before diagnosis, maybe my muscles are just playing up. It’s like I need to keep stretching my legs to get some relief?
Yes definitely keep each other posted, and I really hope that now you’re on the steroids you bounce back, let me know how you go.
Lynette x
Hi Lynette and Sarah
Great news you both seem to be getting the help you need, Sarah the steroids made me feel so full of energy I couldn’t believe it, most energy I have had in all my adult life, they did however keep me awake at night. Small price to pay I thought for the way they made me feel. I was on a 5 day course 500mg per day and really helped with my speech, chewing, swallowing and walking, so feel confident they will help improve all your symptoms
Lynette I’m so happy you did well with your lumbar puncture and felt not too bad afterwards, well done. Hope you are keeping better and still full of high spirits. Fantastic you managed your day out here’s hoping you on the road for many more.
I, as you know had appointment with MS Neuro last Wednesday, He was lovely and answered all the questions myself and partner had, difficult for them to know all the answers as each individual different, and of course my other auto-immune disease makes it more of a challenge. I too was advised of Lemtrada and Tecfidera however MS Neuro has to confirm with other consultant that it will not affect my other condition so fingers crossed I will at least have an option of some help, they do not know where to go with me if cant have these 2 options.
My only wish now is to hear from the MS clinic/Nurse very soon very selfishly its less than 10 weeks to my wedding I would love to have started some medication to get used to any side affects and feel confident no further attacks just around the corner. I still have no medication for either condition which leaves me a little worried what’s coming my way.
You both keep your spirits high, sending you both kind thoughts
Take care
Babymurph
1 Like
Hi Babymurph
Thankyou I’ve actually managed to enjoy my weekend, can pick my feet up and it’s great not being exhausted even getting dressed! Totally can’t sleep though, wide awake and hungry too!!!
Hope you get sorted out soon before your wedding to let you enjoy every minute.
Sarah x
1 Like
Hi Babymurph and Sarah
Glad you are starting to get somewhere Babymurph with neuro but feel for you in that you have to wait to see if medication is ok with other consultant as you will be as eager as me to start fighting this disease as best you can.
I don’t think you are selfish at all for hoping things move quick. Your wedding is an important day and you want to feel the best you can as I’m sure there is enough stress already. I’m keeping everything crossed for you but I’m sure you will be just fine as you are learning what to look out for.
Sarah, great news you are picking up and glad the steroids are working. Hope you feel better in yourself too.
Got home from work just now to a letter from ms nurse to attend an appointment next Thursday morning. Another time slot to tell work I won’t be in, appointments will dwindle I’m sure once they have all tests, medication sorted. Think it must be this beginning stage it’s constant.
Lynette x
Hi
Hope yous are getting on well. Letter arrived for MRI scan, not until 31st July!!! MS nurse coming today so going ask her why Neurologist promised me it would be within 2 weeks!!! Had physio on Monday, I got exercises to do but apart from a numb toe in my right foot there doesn’t seem to be any lasting damage and seem to have my balance back, fingers crossed I don’t get anything like that again!!! My bloods all came back ok, just a bit disappointed how long this is taking to get on meds, I even paid my holiday for middle of August on basis of what neuro told me at my appointment, thinking I’d be on medication and be ok! Just would love to get back to work even if was doing some other kind of job for now!
Will see what MS nurse says today!
Thanks
Sarah x
Hi Sarah
Glad to hear there seems to be no long lasting damage. You’ve certainly had a rough time but good you’ve bounced back.
How did it go with ms nurse? I have mine tomorrow at 10 so just going to work after it. Getting a lot of issues with leg at the moment. Tingling becoming more often and heavy feeling coming and going.
My spine and brain MRI is this Sunday so all tests like bloods and lumbar puncture complete but who knows when appt will be to see neurologist : / I’m like you Sarah in that I want on the meds asap as feel the disease is full throttle to carry on and I just want to start slowing it down now.
Hopefully you will be sorted for your holiday, but if not, enjoy every minute and try to forget about this and then start again to fight when you come back.
Lynette x
Hi Lynette
it went ok, she was very positive about everything, she doesn’t think I’ll see neurologist but instead he will get my scan results and advise her what’s to happen regarding meds! She says it’s normal for the wait for scan!
Shes just advised me to contact her if there’s anything and to try just get on with life!
I went for a walk this morning, maybe pushed it a bit but struggled a little bit on way back, my balance wasn’t great but legs felt ok! The only thing I seem to have been left with is bit of numbness in one of my toes, hoping it goes away.
Just want to get on the meds now, know exactly how you feel.
Sarah x
Hi Lynette
Hips things going ok with you. Got call last thing on Friday regarding my MRI as had asked to be contacted if an earlier appointment became available so I have it tomorrow (Tues) rather than 31st July. Hoping this speeds things up for me!
Sarah x
Hi Sarah
Great news MRI is tomorrow, hopefully move things quicker now. I hope you are doing well?
I’m good thanks, leg isn’t as bad with sensations last few days so hopefully that continues.
I am also more aware with keeping core temperature cool after ms nurse last week so take to work my cooling spray and got gel patches should it get bad as our office can be horrendous in the afternoon on a hot day and that’s with fans. Never took on the ice packs in bra though which some do as don’t think that’s a look for the office haha
Nurse again on Wednesday about meds so getting there slowly to try and slow this down.
Have you heard anymore about meds etc? Hope you are feeling a bit more positive now.
Lynette x
Hi Lynette
MS nurse spoke briefly about them but said we can go more into depth next time. If it’s active like I think it is and after neuro mentioning it then am thinking lemtrada but will wait and see what they suggest! Feeling bit more positive, can’t believe I’m looking forward to my scan tomorrow but if it gets things moving. What are you thinking for meds?
Sarah
Can’t believe I’m looking forward to MRI but if it gets things moving!!! Not sure, ms nurse said we will focus on meds next time but she did mention lemtrada so did neuro so if it she goin got be best option for keeping it under control, I like the idea of treatment all at once then after a year! What are you thinking?
Trying to stay as positive as I can, trying my best to look after myself with eating healthy and getting a good nights sleep and started swimming and being as active as I can.
Sarah x
Lost first comment so now I’ve posted twice x
That’s great you are feeling more positive Sarah. I think for what I was like nearly 2 months ago, I have climbed back up to where I was mentally although still think about it 24/7 but guess it’s part of acceptance to it.
I am steering towards the Lemtrada after originally saying no chance although it still scares me. Nurse knows I am between Lemtrada and Tecfidera but we will look at all the first line meds neurologist suggested to explore. She told me to look at MSTrust decisions app and do a survey/questionnaire this Wednesday. She said the only thing that would sway things is if my lumbar puncture or MRI’s came back saying original thinking wasn’t on par.
I hope all goes well for your appt tomorrow and let me know how you get on. Will be thinking of you.
Lynette x
Sorry to hear of your situation, I was diagnosed just over 4 years ago now, although I think looking back I had symptoms long before I did anything about it. Once you start on a medication plan, personally I use the Co-Paxin daily injections and have probably had 4 or 5 relapses that have caused additional lesions, but thankfully none that have been too damaging. I too had a lumber puncture, which was not as bad as I had imagined, although by no means pleasant. I did feel that this test was probably the least effective in diagnosing my condition, and have had many people agree that it seemed like an unnecessary discomfort, as the decision had pretty much already be determined. I am not suggesting that you avoid the procedure, but I would have it confirmed that it is a necessary test, as I was told afterwards that the diagnosis has already been made prior to it, when I asked to read my medical records.
Although it is really difficult to get your head round, and I agree with another member’s comment that there was a long period of denial (which does in fact continue, I often still think there has been a mistake!), it does become easier to accept and deal with, and when you start your medication, which although may not fully relieve your symptoms, does give some peace of mind that relapses may not be as often, or as severe. For me, getting the combination of pain relief to a point where I, although never painfree, can at least get through the day was the most important progress. Use these sites and communicate with fellow sufferers, I chose not to for about 4 years, due to avoidance and unacceptance of my condition, and have only just started to join in. The support you get on so many levels is invaluable, the advice from those that have tried many combinations of drugs, can give you informed questions to ask your GP, MS nurse etc, and the open discussions (although understandably moderated) about cannabis use is also refreshing.
But just some kind words from others who understand and care is worth its weight in gold.
Hope this helps, you will be fine, it just takes time.
Amy x