Hi all I’ve been away for a bit, trying not to dwell on all this. Now, after quite a long wait I now have the results of all the tests. The outcome is that everything else is ruled out, and I have had a CIS event - transverse myelitis I.e. All my lower body symptoms were caused by one spinal lesion. I know that the chances of getting a second attack - which would then mean MS - are hard to predict. I have one brain lesion. If it were zero then it would be 20% chance of a second attack. If I had many brain lesions,it would be a very high chance. 1 (small) lesion is a bit insignificant, but nonetheless the neuro said it did mean chances were prob a bit higher than 20%. What I didn’t ask, and I’m wondering if any of you have idea, is whether age plays a factor? Does the fact that I’m relatively old (42) to be first getting this mean it’s less likely to develop into ms? Also if it does develop, does the severity of attacks have any correlation with age?(either way?) Btw, I was also told to take vit d supplements in winter. Any advice about that? I assume much cheaper over the counter than on prescription - anything wrong with supermarket ones? Many thanks in advance for your always helpful advice and support! Clare
Cant help too much on transverse myelitis but i had what was classed as myelitis 18months ago after i had ever test under the sun resulting in them finding one spinal lesion. This caused my to go completely numb all on myleft side…neuro said it was a one time thing and may never happen again. One year later and another 2 episodes, MRI scans and i have MS. I was 38 with first episode and am nearly 40 now.
I can only tell u what he told me…sometimes TM is a one off, as is myelitis, but as they still dont know what causes it they cannot predict what will happen. Time will tell and unfortunately it is patience and waiting…if it is ms then it will show up eventually. 50/50 chance of anything else happening was about all he could tell me and i did develop it…think he wasn’t suprised though as one sided numbness is quite common fora prelude to ms apparently???
I dont take Vit D suppliments but only coz i am on gabapentin and start DMD’s on thursday…but i do know that my count wasn’t low, well thats what he told me! I have one spinal lesion (possibly 2 but the other was small) and 3 brain lesions. Two attacks of the CNS (at different sites, like spine and brain) classes it as ms…so until you have another attack it is classed as CIS event.
Hopefully it will not progress to ms and u will get better (slowly as spinal chord is slow to heal) but if not then there is nothing you can do to prevent it and big hugs from me anyway! x
If you feel being proactive gives you peace of mind, then go for it. Anything that makes you calmer and feel better is never wrong. But do check with your gp anything you decide to try as it is helpful if gp knows whats going on, for safety reasons if nothing else. Good luck, keep us posted!
What is the difference between CIS and MS? Based upon clinical symptoms alone, CIS and MS appear the same. However, definite MS can be diagnosed only after occurrence of a second episode of MS-like symptoms (or magnetic resonance imaging (MRI) signs) that meet specific diagnostic criteria. It is not possible to predict with certainty if an individual with CIS will develop MS. Studies show that 85% of individuals with clinically definite MS initially had CIS. How is CIS diagnosed? Diagnosis of clinically isolated syndrome (CIS) is based mainly on clinical findings, including your reports of “invisible” symptoms. Your physician must also rule out other conditions that may mimic CIS . An MRI scan is performed to look for signs of inflammation and demyelination (i.e., lesions) in the CNS. What does a CIS mean for me? For many individuals, CIS predicts a second attack of symptoms that confirms the diagnosis of MS. This possibility is difficult to come to terms with. However, experts who treat MS believe CIS presents a valuable window of opportunity – the chance to set in motion the tests and imaging studies that can rule out or confirm MS sooner rather than later. Taking action is one way to manage the anxiety of waiting for a final diagnosis. An individual’s level of risk can be suggested based on findings of an MRI scan performed at the time of the CIS. Those with no lesions detected on MRI are at low risk of developing MS; risk increases with the number of lesions detected. Trials of CIS patients with two or more lesions on brain MRI (which were not causing symptoms) found that over the following 2 to 3 years, 45% to 50% of patients had a second attack (i.e. met the clinical criteria for MS). Regarding vitamin D it is adviced that you have an appropriate blood test and obtain the right type n dosage as soon as you’re in receipt of your results. I am currently on vitamin D3 1600iu per day for a year, blood’s repeated in 6 months. Best wishes x