Hi All, Just wondering if anyone can advise me please? As yet i haven’t been diagnosed with MS, as only started with symptoms in June of this year, when i was hospitalised for investigations. I had extreme dizziness, which despite numerous medications, it didn’t subside. Following CT Scans, MRI Scan and Lumbar Puncture, it was mentioned that i had a probable diagnosis of MS. My MRI Scan showed various lesions, i think about 6 in total, and the Lumbar Puncture also came back indicative of MS. This totally knocked the wind out of my sails, and also shocked Family and Friends as up until this point i was fit and well. I had a follow up with the Neurologist in August, who was reluctant to diagnose, but did refer me on to the MS Nurse. I’ve had numerous symptoms since June, and don’t really Know if they are associated with MS or not, they are as follows : tightness around chest area, :extreme fatigue, :developed a tremor to my right hand which lasted 2 weeeks, and happens occasionally now, :aching joints especially on a night, :pins and needles to my hands and feet(more so on a night), :and the latest one is that sometimes when i walk my legs feel like jelly. I have a Neuro appointment next week and basically wanted advise regarding the above symptoms and also what to expect at this appointment. Sorry for the long post guys, but really not enjoying this waiting game one little bit, so any advice would be greatly appreciated x
Hi Rosie Why was your neuro reluctant to diagnose? It s good that you have been referred to a ms nurse, they are worth their weight in gold. At your next appointment I would make sure the neuro knows about all of your current symptoms, including the ones that come and go. There are some meds to help with neuropathic pain , which from what you have said sounds like your experiencing. Also it is worth asking about disease modifying therapy, and if you are eligible . If you have any questions you need answering (probably lots) make sure to ask . If you can might be worth taking somebody with you for support,. I hope you get some answers and that the neuro gets you on the road to recovery soon, take care. Lx
I suppose the Neuro was reluctant to diagnose as this was my 1st episode, and was just putting it down to CIS, which i was kind of hoping it was. However as these new symtoms keep coming and going it does leave me wondering if it is indeed MS. I do take Amytriptiline at the moment which does kind of help with the Neuropathic pain, but then they just leave me feeling groggy the next day. Probably if i didnt have to get up with the alarm clock and could just sleep them off i would tolerate them better. Luckily my Husband will be coming with me as always to the Neuro appointment, and he will have no end of questions incase i forget to mention something.The MS Nurse as been fab and i have seen her a couple of times since August. She did mention that the Neuro might put me on some kind of medication for the Fatigue, and also mentioned that i will be having another MRI Scan. so i guess its just wait and see what next week brings really. I’m hoping that diagnosis will be soon, but then reading all the posts on here, it does seem to take forever. Until that point i’ll have to put up with my jittery legs…bit like been drunk but without consuming the alcohol . Thanks for replying, all advice is good x
I was the same with amitriptyline, turned me into a zombie for most of the day. Not good with two toddlers running about! I tried pregablin, but had an allergic reaction. I now take gabapentin which doesn’t have the same effect, and is good for dulling the jerks and pains. Sounds like your neuro is on the ball, which can be half the battle. Glad your hubby is coming along, I always forget stuff so I give my husband a list do he can ensure I don’t forget anything!! Hope all goes well for you x