at a loss

Hi My daughter was diagnosed with severed rapidly evolving remitting ms ( i think its called that) at 18yrs old. she is now 23yrs old she had Lemtrada DMT last round Dec 2019. Her thyroid is now become overactive and she was incredibly ill and spent time in hospital a month ago. i am really struggling in the best way to support her, she is incredibly depressed had suicidal ideations now under control with duloxetine however, she is still struggling physically and emotionally. Shes angry lost pleasure in everything lost her relationship due to her not wanting sex feels if she had a partner they’d end up her carer feels her life is over. her body aches shes fatigued and i am at a total loss as i cannot find young people who have a diagnosis that are in a support group that she would like to engage with. she gets upset as its promoted as an older persons illness and photos for advertisement reinforce that message therefore shes is cut off and isolates herself please can someone advise me what to do as its making me feel stressed upset and feelings of extreme guilt that i cannot help

regards Justbliss007 :slight_smile:

Hello Justbliss

Welcome to the forum. Oh I do feel for you. Your poor daughter has had a horrible start to her adult life. And as her mother you must feel such pain to witness her distress.

Lemtrada is paraded as the ‘gold standard’ in terms of disease modifying drug, and so it is. But the problem with all drugs is the side effects and your daughter has come up against a horrible one. I understand how nasty overactive thyroid is; I had Graves Disease (one of the types of autoimmune overactive thyroid) at a similar age to your daughter. Mine was operated on at the age of 22 and that resolved it.

What I’d suggest is that (if she hasn’t found it already) the MS forum at It’s got a lot more young users than (for eg) this site. And many of those will have taken Lemtrada, chances are there will be others who’ve had the same side effect to Lemtrada.

She could of course, join us on this site. Many of us are older than her (much older in my case - I’m 54), but we are pretty much empathetic and open to all new users of the forum.



Perfectly put Sue

I was going to suggest as a good place to get some younger perspectives.

It breaks my heart to hear of Justbliss007 and her daughters horrible problems, it is so bloody frustrating to be unable to lessen their burden. For all the good it does I can only offer a shed tear and sympathy. I hope that Shift.MS might be able to offer something more useful.