I am new to these forums as i was diagnosed with MS some 4 weeks ago and to be honest i have not done a great deal in that time as initially having struggled with my walking and balance for over a near now and thought nothing would change.
However the diagnosing has brought my symptoms into sharp focus and i have been on a rollocoster of emotions in the last couple of weeks leading me to take some time off work, which has given me a bit of time to look into MS.
When i was diagnosed by the neurologist, i could not think of anything to ask as apart being stunned throughout the tests and previous referals MS was always the worst case senario and i had refused to think the worst, especially given that these referrals mostly took 12 weeks or more.
The neurologist said the referral would be 2-3 month for the MS specialist but i could request to meet the MS nurse before or give her a call if i thought of any questions. Currently i have left message for the neurologist to contact me, but i am at a loss every time i come to talk about my MS, more so when people ask how they can help.
I do struggle to walk for more than ten minutes (with every step a stumble), stairs are a nightmare… especially with all this rain, i have tremor/burning sensations in my legs and abdnomen… when i force myself to be active i just need to sleep but when i dont move i get soo stiff… my symptoms are worse than they were a year ago but i dont seem to have the strong relapses i have read about.
If anyone can help me with what questions i can be asking or even what help i can/should be asking for it woud really help.
i just feel stuck in limbo and i dont know what i can do.
Hi Neil, it’s so hard when you first get dx and your emotional response is very normal. It is a rollercoaster and the best thing you can do is try to roll with it. Let the emotions come. Try not to fight them.
As for asking questions, yes so difficult to think of quesions when the whole things seems to be a whirlpool… and MS is a very difficult condition to understand. I’ve been dx for four and a half years and still don’t quite understand it!
I would think you will want to know what type of MS you have (there are various types as you might know… but for more info go to ‘what is MS?’ on the homepage of this site). In your position I think I would want to ask that, what type is it. They might at this stage not even know yet as sometimes it takes a period of monitoring to find out.
If it is RRMS (Relapsing Remitting MS) then you could ask about the drugs that are available to help symptoms.
If you have pain and discomfort, whatever type of MS it might be, ask what they can prescribe to help with that. Don’t suffer when there are some good drugs to help!
But mainly Neil I would say this to you. You are only at the very beginning of learning that you have MS (I nearly wrote ‘your journey’ but it kinda put my teeth on edge!). Trying to think of questions to ask and what help to ask for can come in a while. For now, in your shoes, I would just try to deal with the fact that you have MS. Even knowing what type it is right now isn’t really important. MS is MS… the types aren’t important.
I think it more important that you express your feeling right now and MS nurses are extremely good and experienced with dealing with these emotions, and offering advice and support. So don’t feel that you have to be armed with a list of good questions. Tell the nurse what you have told us on here. Say how you feel. Say you can’t think of questions because you are on a rollercoaster. The nurse will understand.
If you don’t feel comfortable talking to the nurse, I hope you have a friend, relative, partner… or someone you can talk to? It really does help.
When you get your head around that fact that you have MS you will find yourself having lists and lists of questions. The more you learn about it the more the questions will come. But for now just deal with the emotions of having MS.
Hi Neil, and welcome to the site As Pat said, it’s an emotional rollercoaster in the early days so take your time and forgive yourself for not being on top of it all. It sounds like you could do with some help with your symptoms, for example, a neuropathic painkiller will help with your sensory problems. Your walking and stiffness might be helped with physio and/or meds too - so you could also ask the MS nurse about seeing a neurophysio. Getting the right meds can make a massive difference and your MS nurse can certainly help with that. Just in case no one’s told you this already: you need to tell the DVLA about your diagnosis and you should check any policies you have that might have a critical health clause (e.g. your mortgage) because MS is a payable condition. Karen x
As Pat said, it’s an emotional rollercoaster in the early days so take your time and forgive yourself for not being on top of it all. It sounds like you could do with some help with your symptoms, for example, a neuropathic painkiller will help with your sensory problems. Your walking and stiffness might be helped with physio and/or meds too - so you could also ask the MS nurse about seeing a neurophysio. Getting the right meds can make a massive difference and your MS nurse can certainly help with that. Just in case no one’s told you this already: you need to tell the DVLA about your diagnosis and you should check any policies you have that might have a critical health clause (e.g. your mortgage) because MS is a payable condition. Karen x