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Clinically Isolated Syndrome

Hello, I am new to shift ms. I have been diagnosed with clinically isolated syndrome. I feel like I am in limbo land. I have has normal MRI’s for a year. I have several MS symptoms. MS hug, numbness right side, face, tongue, roof of mouth, L’Hermittes, weakness, severe fatigue, on and on. I hate this feeling of not having a legitimate diagnosis but severe symptoms to the point I can barely work. Any advice is much appreciated from anyone that has gone through this. Thanks Carmen



Hi @carmfisch99yahoo-com and welcome. A diagnosis of Clinically Isolated Syndrome (CIS) is a frustrating one. You've potentially had one relapse, which doesn't quite fit the "Mcdonald Criteria" (https://www.mstrust.org.uk/a-z/mcdonald-criteria) for formally diagnosing MS. Your Neuro is therefore waiting to see what happens next. However, some proactive Neuros are now treating CIS with Disease Modifying Therapies (DMTs), to try and prevent progression to MS. But, your one "relapse" has left some residual damage, hence your continuing symptoms. Overall, treatment for MS consists of a DMT, to try and prevent further relapses/damage, and medications for symptom management. It is this second area that you need some guidance from your Neuro. We have to manage our symptoms too. We can make our symptoms flare up by a variety of actions, e.g. becoming over-tired, eating something, getting stressed, etc. We need to identify and avoid these causal factors. There's some details on all of the MS symptoms here :- https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/symptoms This may give some suggestions to symptom management and treatment.



Thank you



Hi @carmfisch99yahoo-com I feel the pain. The 18 months I went through trying to get s diagnosis mine was called myelitis, spinal cord lesion but negative lumber puncture. Lesion on spine left permanent nerve damage to right arm and hand, numbness/pins and needles etc. I still did not meet the criteria until nearly two years later further brain MRI scans and more lesions! 18 months of going along a road of going back and forth in my head it may be MS. Only diagnosed now in December of MS and started DMT. I know limbo land is not great at all but keep your spirits up and you will get through this period. Also back up plan is ask for a 2nd opinion, I did just to reassure myself that there was nothing being missed.?you get one body so you have every right to look out for yourself. Take care now.



Sounds like watch and wait: https://www.youtube.com/watch?v=51B1VpGchDc&t=452s Completely not the way to treat it, imo.



Thank you. Any information is appreciated!



I feel like I wrote this myself. Hang in there:)



@carmfisch99yahoo.com, Did you have a LP? The McDonald criteria has been updated recently and allows for an earlier diagnosis with a positive LP. I’m currently CIS but have a neurologist appointment where I’m fairly sure she’ll confirm I’ve now got MS despite no change clinically or on MRI. I did get offered DMTs with a CIS diagnosis. Was on Rebif from Feb 2017 until December - off due to low wbc.



Hi, IMHO anyone who advises watch and wait in this day and age is clueless... My advice is take proactive measures ASAP, I ran a lot of R&D going through almost identical situation to yourself, the statistics for CIS remaining CIS are very low indeed. As someone mentioned, did you have an LP and was it positive or negative? does affect stats for going to develop CDMS; that said the stats are not radically different than a positive LP, but are better and may influence your decisions. I won't advise on you on course of action to take as that is personal choice; obviously the longer it goes without relapse you are in the "good prognosis category", which I was advised is ~2 yrs plus between CIS and subsequent... not sure on the science on this.... That said a first line DMT might not be the worst thing in the world, or high does Vitamin D as per Coimbra Protocol or even both combined..... If you want anymore info PM me.



I have had two LP both were negative. The MS doctor told me I could have had a lesion that healed and did not show on the MRI. I know this is absolutely absurd. I have been in a flare for three months and the doctor will not do anything not even steroids. It is a shame what our medical system has become. Carmen