Rare Aggressive MS Diagnosis


My fiancée is 25 years old and has always been fit and healthy. In August 2017 he suffered from bladder retention, which resulted in a trip to the hospital to get a catheter fitted. Over the next few days his legs became increasingly weak to the point of having a bad fall on the way to his GP and having to return to hospital where he has remained since.

His first MRI scan showed lesions in the CNS leading to an MS diagnosis and a course of steroids. Despite the high dose of steroids, he continued to get worse and each MRI he received showed multiple new lesions. Within 2 weeks of his admission to hospital he had lost all movement in his legs and arms, lost all bowel and bladder function, began to lose his eyesight and was transferred to the High Dependency Unit and put on oxygen as his breathing had deteriorated.

After multiple failed treatment attempts he began to receive Cyclophosphamide and 5 months on we are seeing very slow improvements. We have had mixed opinions regarding diagnosis, some say it is a very rare, aggressive variant of MS and others say their gut feeling says it is something else. Either way everyone who has seen him has agreed they have never seen a case like it.

Research on the subject is limited, so if there is anyone who has had a similar experience with aggressive MS, or anyone with any knowledge or advice, we would appreciate anything you can tell us.


Hi Beth

That sounds like the worst of all places for both of you to be.

I’m sorry, I can’t offer any words of anything other than sympathy for what you are going though.

To be honest, whether it’s a very rare, very aggressive MS or some other crazily virulent neurological disorder probably makes very little difference if the doctors are stumped by it.

It does sound like all the worst MS symptoms put together and attacking virtually simultaneously with drug interventions being mostly useless.

I truly hope that the worst is over, the Cyclophosphamide does the job, and that he recovers from whatever has attacked him.