Not MS but hypomyelination disease

Well we have a differencial diagnosis it is not MS, but a rarer than rare genetic condition, which is still progressive and no cure, called hypomyelination disease, similar to MS the myelin sheath as not formed properly where as in MS it de- myelinates. there is a prof in holland who has written extensively on the condition, so they will ask to review my case and may have to find funding to send me to holland, my sister also has mild symptoms of the same and confirmation that she also has it through MRI scans, we are hoping her children and grandchildren will be ok. But consultant is excited because it’s so rare and they have access to a whole family. I wonder if this is rare due to MS being incorrectly diagnosed in some people, mum was diagnosed with MS they are 99% sure she didn’t have MS but had this
I’ve also been dismissed from work, went back on phased return , but was not successful and they weren’t able to offer me anything suitable within the compamy,
I have also sold my house, because I came to the realisation I can no longer cope with the garden or the house, so will be moving, with the two dogs and cat to a one bedroom ground floor flat, leaving my childhood home, all ive known for 50 years, but its a new beginning , a new season, so i’ll move forward into it.

Gosh, this is interesting. It does make you wonder. I have not been dx yet and I always wonder about progressive diseases that are not MS. Usually people with RRMS are dx correctly but I have been told that some with PPMS are incorrectlt diagnosed especialy of the LP is negative.

I am interested how they have dx you. Did you have MRI, and LP and what are your symptoms.

Take Care

Moyna xxx

Hello. I’m really sorry about your diagnosis but it would be interesting to hear more about this rare disease, when your ready of course.

I’m sorry you’ve lost your job…hope you’ll be able to find something else if your well enough.

It must be quite stressfull moving home after all these years but you sound like your being positive about it.

All the best to you.

Take care, Noreen


I lost my job too and had to sell our house and lots of other things too. Looks like I am about to loose my Driving Licence aswell. We have now settled in our new house and just feel so good that we now wish we had done it sooner. We still have two sons living with us, so we had to find a 3 bedroom house, it may seem a big decision but I can say its been the best decision we have made. I do mourn at times my old life, but I do not miss it. I am now able to spend more time with my grandchildren and two dogs, I search on the web for holiday bargains and have already booked 3 weekends away in GB next year, I am in my element. Although I have progressively got worse since 2006 I still have no formal diagnosis. Life is odd and the world is an adventure. take care and good luck in going to Holland.

I’m sorry to hear about the diagnosis and the impending move. I guess as Medion said - change is difficult but sometimes the only way to move forward is to adapt with the new circumstance we find ourselves in.

I’m sure there are lots of people out there who like your mother have been mis-diagnosed. It just goes to show science has gone a long way but the nervous system and brain are complex and there’s still much we don’t know about or don’t know well enough. It must be diffciult knowing you have something genetic that is progressive from a kids and family point of view. But I hope that now you are diagnosed they can start to do something to help you or your future generations to come.

The future will be different to what you planned it can still be bright. Even though your diagnosis is different the symptoms you experience may overlap so you will always have a friendly ear here to share your symptoms and difficulties.

Wishing you the best of luck in the future - hope you get that trip to Holland so you can speak to someone who knows more about the implications about your diagnosis.