My mother had MS and my father had ALS. Since my daughters birth I’ve had what started with generalized tingling and limbs falling dead asleep very easily, to generalized muscle ticks, to now having painful spasms to wear my toes and fingers move involuntarily. I have intense headaches at times, dizziness at times, and fatigue. I also have an enlarged optic nerve but no optic nerve damage. I’ve had an MRI in Jan that was negative but my symptoms have gotten worse since. My questions are what were your first symptoms? How long after a normal MRI til diagnosis? And does anyone else have it in the family?
My mother had Primary Progressive MS. She died last year at 59, after a pretty horrendous year of hospital admissions, grade 4 pressure sores and pneumonia. About 3 years ago I went to the doctor as the whole of the right side of my body became numb for a few weeks. Doctors weee baffled, I had an MRI. Never heard anything again. March this year, I developed optic neuritis overnight and literally woke up practically blind. I went for numerous blood tests with my GP, eventually managed to convince them to do an MRI. Bloods came back with low thyroid - I’d been experiencing pins and needles and strange sensations so this was great - must be the thyroid. This Tuesday I had an appointment that I didn’t know about. Had a text come through to remind me of an appointment I’d never received through the post. Figured it was to explain my MRI results and a check up so off I went. Little did I know this was with the MS neurologist - he spouted out his script about how I have relapsing-remitting ms. Couldn’t find any information for me but smiled and sent me on my merry way. Not sure to what severity the MS is in your family, but I’m still pretty shocked, angered, low and unable to motivate myself after finding this news out in a seemingly nonchalance way. Not sure if it’s a definite diagnosis, what my prognosis is, if I have to start drugs or anything. Although, the optic neuritis that kicked this all off, happened 6 months after the birth of my Daughter. I’ve read previously that pregnancy can awaken something that’s dormant with auto immune disorders, but I can’t quite remember the ins and outs of it. Anyway, I hope you get some answers soon!
that is a shocking way to find out that you have ms.
when i was given my diagnosis there was my ms nurse, who i hadn’t met, present.
the neuro explained about the DMDs and told me to discuss it with my nurse.
so you have had neither the ms nurse or the option of a DMD.
talk to your gp and ask to be re-referred.
as for the childbirth question - my aunt had a bad car accident followed by pregnancy and childbirth.
ms kicked in a couple of years later.
it was the 1960’s and there was no treatment for it.
my aunt went downhill fast and died when my cousin was 12.
so insist on the DMD conversation.
it’s vitally important for you and your family.
BPope - this answers your question of family members with ms.
i have an aunt with rheumatoid arthritis, another auto-immune disease.
my sister got off lightly with psoriais!
Would you mind sharing a little about your experiences? Symptoms, how it affects you now compared to then and how long ago you were diagnosed? My only experience has been of my mum and people I have nursed in the past. I think having family members can sometimes make things worse as it’s hard to move away from the feelings that you might end up like that.
There is a slightly raised likelihood of having MS if a close family member has it. The MS Trust has a fact sheet on it: https://www.mstrust.org.uk/a-z/risk-developing-ms
It’s by no means usual to have a clear MRI then later be diagnosed with MS but it does still happen. BpopeRN, if you continue with your symptoms, you should perhaps try to see a neurologist again to discuss. Having had both parents with neurological conditions sounds like your own health is always somewhere in your mind. It might be worth starting to keep a diary to make sure you can report back to the neurologist any symptoms you experience, together with the length of time the symptoms last.
Amie, your diagnosis sounds absolutely horrible. And really a very unpleasant way to get some unexpected bad news.
Because your mother had PPMS, obviously this is very much in your mind, but as your diagnosis was of relapsing remitting MS, at least you should be able to get some disease modifying drugs (DMDs). Their purpose is to reduce the number and severity of relapses. And with less relapses, you would expect much less ensuing disability.
So with luck, you will shortly be given the contact details of an MS nurse and will be able to start a DMD. If you aren’t automatically connected with an MS nurse, try phoning the neurologists secretary and find out how and when your care and treatment is to follow and the contact number of the MS nurse.
My own story is very different to your own as I’ve had MS for 21 years and have been in the main unable to take DMDs. So I’m more disabled than would be expected were I diagnosed today.
Best of luck to you both.