Pregnancy and limboland

Dear All,

I wondered if anyone has any advice on pregnancy and the time pre-diagnosis?

To keep the story short, I am 33 and thinking of having a baby. However, just under two years ago I started having neurological symptoms which led to me being investigated for MS. I had my first ‘attack’ with symptoms such as: waking up with numb hands and legs, double vision, eye pain, leg weakness ( my legs literally broke under me when I was in a shop…) and smaller symptoms such us pins and needles, shooting pain in hands and legs, my fingers going all white in my hands ( I would attach a picture of this, but don’t seem to be able to see the button for attachments) and also sensitivity to heat and getting very tired. Also my right hand felt very week and I kept dropping things all the time.

These symptoms lasted for couple a of months . They referred me to ophthalmologist who suspected MS and then to neurologist. But my tests came back ‘within the norm’ . MRI clear ( small white spot there but dismissed by my MS neurologist) , LP negative. Blood tests all good, except chronic white low white cell count. Vitamin levels all ok, HIV and other illnesses negative. So generally clear bill of health, and I’ve been told it is probably nothing or something functional like FND and that it will go away. I received a patronising lecture from my MS neurologist and was sent home with an advice to look at neurosymptoms website. However when I got the letter back from my appointment it stated diagnosis: unclear/likely functional.

And while this is good news that my scans are clear the problem is that I keep having my symptoms. They never came back as strong as when I had my initial episode but they linger in the background. I still get numbness and tingling, muscle spasms in my legs and hands,I get very tired, especially when its hot and humid, I get problems with my eyes and essentially all the same symptoms but not as intense as they were when they referred me to neurologist.

I haven’t been to a GP since as I do not want to be treated as a hipochondriac so I am really waiting for another ‘attack’ or for things to get worse till I ask for another referral to Neurologist to have this reviewed.

I live a very healthy lifestyle, I follow Paleo diet, exercise and don’t have any health issues except depression in the past which I take medication for and they help.

But since I am thinking of getting pregnant now, I would like to make sure that there is nothing worse going on with my body, like potentially MS so as I know where I stand.

Anyone other woman out there that has been in a similar situation?

Just to add - my grandfather had Parkinson’s and my sister has chronic migraines. Other than that only cancer in the family.

sorry sarra

i am not qualified to comment.

it will be a matter of liaising with your midwife and neuro.

whatever treatment you take for ms will need to be shared with midwife.

really though, it is your decision.

good luck

carole x

Hello, I have not commented on this forum before but read your post and felt compelled to do so as am in a similar situation myself. I had an MRI about 6 years ago and they found two legions on my brain that were at that point diagnosed as subclinical, and the Neuro said that I needed to be monitored in case things worsened, but I was not diagnosed with MS at this point but with another condition called Chiari malformation. Have experienced mild symptoms sporadically ever since and last year while I was pregnant experienced very severe headaches and fatigue so my doc sent me for a CT scan. Was then re-referred to my Neuro after I had given birth to my son last October and had a further MRI in February. I recently had a follow up with my Neuro and another small legion has appeared on my brain. Am actually pregnant AGAIN and my neurologist advised two things - firstly that MS symptoms can IMPROVE with pregnancy and you are more likely to have a relapse after you have given birth, and secondly that there is no treatment you can have while you are pregnant. I am scheduled for another MRI and follow up after my next child is born in February. Obviously I am a little concerned, but have noticed that my symptoms have improved in the last 10 weeks since I have been pregnant so am just going to get on with it and see what happens at the follow up appointment. Please do not be afraid of coming across as a hypochondriac - keep pushing to get the answers that you need and see if you can get a re-referral from your GP to your neuro to discuss with them. You might be able to get some reassurance if nothing else! Good luck and try not to worry. Sarah x

Hi Sarra, Again I’m not qualified to diagnose MS but I understand your feelings of confusion and anxiety about all your symptoms and the whole scenario you find yourself in! I would just like to reiterate what Sarah has previously put and say don’t give up on finding answer it took me 3 visits to the docs only over a 3 week period for them to finally listen and realise something wasn’t right as my whole right side had gone completely numb, I could hardly walk or stir a cup of a tea as a couldn’t lift my right arm i thought I was having some sought of stroke! I had given birth to my son 9 months earlier and really struggled to look after him i couldnt pick him up or change his bum it was a complete nightmare! And don’t get me wrong I had experienced other symptoms but like yourself I didn’t want to seem like a hypochondriac so didn’t keep bugging the docs. But oh how I wish I had as maybe now I wouldn’t be stuck with the long lasting symptoms/disabilities I have now! Please keep pushing for answers we know our bodies best and if something doesn’t feel right it probably isn’t so go and see/ask a doctor for help! I hope you find the answers you need! Take care Laura