bethcrooks 09/01/18
Last reply 6 months ago
Rare Aggressive MS Diagnosis

Hi,

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.

Beth

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jeanjeany
6 months ago

I am a 64 year old female and was only diagnosed with MS in Sept 2016. I was admitted to Hospital by ambulance after Doctor thought I had a stroke. I had very little use of legs, slurred speech, couldn’t write my name and very cold tingling numbness feeling over most parts of body. Neurologists said I was in the 10% “don’t know” diagnosis after 2 MRI and 3 lumber punctures. I was finally given diagnosis in March 2016 and have made slow progress up to present where I can walk with/without stick. It is very unusual to be diagnosed at my age and I now realise there are SO many variations too. I hope your fiancee can see some steady progress too and all the best to both of you. Kind regards Jean


edgarleroy
6 months ago

stumbler
6 months ago

Hi @bethcrooks and welcome. I can understand your concern, given the circumstances. I saw your post on the MS-UK People Forum.

You’re quite right that there is limited research on Rapidly Aggressive MS, or “Marburg MS”. To be honest, MS itself is still a mystery.

Due to failures with other treatments, Cyclophosphamide was used as the “sledgehammer”, to destroy your partner’s immune system, which was attacking them. The immune system will slowly regenerate, without the destructive aspects of the old one. Then, your partner’s body can start repairing itself. They’re young, so hopefully, they have adequate neuronal reserve for this process.

It’ll be a slow process, so be patient.


wjgregg
6 months ago

Good luck to you both. With warmest best wishes and hopes for the future. It must have been tremendously frightening for you. I’m glad there is a treatment plan.

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