Update - Haven't been here for a few months

Just back with an update - My MRI came back “reassuringly normal” some months ago but I will need to go back to my neurologist. Also my 3 year old son has just been diagnosed with muscular dystrophy (Waiting to see a paediatric neurologist to find out whether it is duchennes or beckers) so I’m going to have genetic testing to see whether I passed him the gene. I suspect that if I am a carrier then I will have tests done to see if I’m a manifesting carrier. It wouldn’t explain all of my symptoms like the positive babinski but could explain why my muscles are so stiff and why I have difficulty walking and feeling generally weak. I was suppose to get back to my neurologist months back but because of the issues with my son being unwell and also due to severely abnormal cells showing up on a cervical screening test (being removed and tested soon) my neurological issues have been put on hold.

I’m hoping that I’ll be referred for some physiotheraphy before long and that after 3 years of going back and forth I’ll get some answers soon :slight_smile:

Hi love, oh I’m so sorry to hear about your son and all the troubles you have had. What a very hard time for you.

I have had severely abnormal cells detected in cervical screening. I had laser treatment to remove them. That was… gosh… it was 1985… 28 years ago!!! No trouble since. I just have to have a cervical smear test every 3 years instead of the usual 5 years… but they have all been clear since.

Sending you great BIG (((((((((((((((((((((((((((((((HUGS))))))))))))))))))))))))))))))))) and wishing you all the best.

Pat x

I’ve had the colposcopy which showed they were definitely abnormal and I’m having them removed by loop treatment under a general anesthetic (I’m very nervous about being awake.) It’s been a case of one thing after another and the M.D diagnosis has just come out of no-where. I thought my son had some learning difficulties and wanted him assessed and some tests done to rule other things out first came back positive for M.D. It’s going to be difficult dealing with the M.D as it progresses especially with my issues but I have good support from my family so we’ll manage.

Whatever I have isn’t suspected as being life threatening (I was told probable M.S up until my second clear MRI) so getting a diagnosis has just been put on hold but I’ve phoned my neurologist today and will hopefully get to the bottom of this before long. Thank you for your reply :slight_smile:

I am so very sorry to hear about your child’s illness. What a time you are having, with both his health and yours. That is all just so unfair.

Thinking of you.

Alison

x

I am sorry to hear about your son and hope that you are getting loads of support from your family and friends. Hopefully your health problems will turn out to be easily treatable. Thinking of you at this difficult time. Teresa xx

So sorry about your son - that must be such a blow :frowning:

I too had abnormal cervical cells many many years ago - so long ago I can’t remember what the thing was that they did to remove them! All I know is that it worked and I’ve been fine since. I hope your loop treatment goes just as well.

I hope the neuro can work with whoever’s doing the genetic testing and you get some answers very soon.

Karen x

So sorry to hear about your son and yourself. Let’s hope they manage to help you both very quickly. Sending (((((HUGS)))))

Janet

x

Oh goodness, what an awful time of it you’ve had/are having. That’s news nobody wants to hear about their child and I feel deeply for you going through this as well as your own ill-health.

Big big hugs at this difficult time,

Deb x

Thank you all for your replies. I was told to expect a duchennes diagnosis for him when I see the paediatric neurologist. Was given an appointment over 2 months away which was unacceptable so I kicked up a fuss about being given news like this and then being left with no info of where to get support or anything about M.D. I had to do my own research. Managed to get an appointment for him for the end of the month now. Also my op is next week so fingers crossed that they get everything and it doesn’t come back.

I’m hoping to hear back from my neurologist soon regarding my son’s diagnosis and carrier testing for myself.

Hi, sorry, only just read your post.

You poor lass, all this worry and thern some, eh?

I can understand you putting your own health issues on a back burner, to deal with your little one`s problems.

I also had abnormal cervical cells, back in the dark ages, when I was 31 (Im 60 now) and I had a hysterectomy. Thats what they did back then. So hopefully today`s treatment is much less invasive and drastic.ie needing less recovery time, I hope, for you.

Best wishes for your son too.

much luv Pollx

Big ((((((HUGS)))))) to u and your boy. xx

Hello lovely x so sorry you and your little boy are going through all this xxxxxxxx

As for the op I also had abnormalites and had a colposcopy and laser treatment about 18 years ago & no problems since xxx I know it still doesn’t stop you worrying though xx

Hope with all my heart it goes well and your little man gets the best the mediacl world can offer xxxxxxjenxxxx

My son was officially diagnosed with Duchennes muscular dystrophy yesterday. He is severely affected but luckily he doesn’t have any tightening of the leg mucles yet but physiotherapy will be started around May or June to get him use to the exercises he will have to do. He’ll be starting steroids as soon as possible once his immunities is checked and top ups given. In regards to myself the paediatric neurologist believes my issues are not related. My positive babinski and sensory issues with my legs to pain and temperature are not related to muscular dystrophy. I will still be tested to see if I carry the gene soon though because there are health issues for some carriers of the gene.

My symptoms have come back. Around November I started getting the tingling and fasciculations in my arms and legs. It then progressed to pains and sporadic weakness in my legs and arms which has increased due to the stress I’ve been under with my son and my own health. Tuesday evening I fell down the entire stairs because my leg went weak suddenly. I’m still waiting to hear back from my neurologist after phoning her receptionist. I’m now keen to try an mri with contrast now my needle phobia can be worked around with the emla cream which was used for my operation last week. I’m still not willing to go through a lumbar puncture though. Would a clear MRI with contrast be more accurate than one without?

Hello hun. Thanks for keeping us updated.

A fall down the stairs? Oh my dear, poor you! having more than your fair share of problems indeed!

I think an MRI with contrast may show more than without…our Rizzo will be along to tell you more, I reckon.

I see you`ve had an op…was that for the abnormal cervical cells? Hope you recover well from that.

Theres so much going on right niow, that you must feel mentally worn out...........physically too, Im sure.

Look after yourself, and watch those damned stairs!

Love to the little lad too.

luv Pollx

Really sorry to hear about your son’s diagnosis, but it sounds like he will be getting good support at least. I hope it makes a big difference.

Contrast is used to show up breaches in the blood brain barrier which indicate that new lesions are forming. This can also be shown using diffusion weighted imaging (DWI) though and that doesn’t require any needles - assuming that the hospital you go to are up to date with newer scanning techniques mind you.

A clear brain and spinal MRI in someone who has had symptoms for at least a couple of months or more is usually enough to make MS very unlikely. A clear MRI with contrast makes this conclusion more certain as it’s possible that new lesions can be missed without contrast (but the new symptoms would arguably have to be less than two months old or so). I think that a clear DWI scan on top of this would almost certainly rule out MS.

Lumbar punctures probably aren’t as bad as you think, but if you can’t see any way that you could do one, perhaps they would consider doing it under sedation? That way you won’t have a clue it’s happening!

I hope your neuro gets in touch soon.

Karen x

I am very sorry about your son. The stress you must be under must be dreadful. As Karen says, it sounds like you are getting good support and help for him. I hope you weren’t too badly injured by your fall. There isn’t a lot I can say to help I know but just take things a day at a time. This is a massive thing to take on board. I hope you get some joy with the neuro soon. Teresa xx