Help - anyone recognises this strange illness?

[Wobblyheart]

Hi everyone.... here I am wondering whether I will see my 5 month old baby grow up and trying to navigate some sort of roadmap of dealing with the uncertainty.

I am 37 years old and for a few years had some minor aches here and there. In autumn 2021 I started having some pins and needles and burning like sensation in my back but after clear mri brushed it all aside and went on to be happily pregnant.

Towards the end of the pregnancy in August 2022 I became short of breath (was told it happens!) and then my arms started feeling rather weak and weird. After my baby was born my health started to decline - I lost a tremendous amount of weight, and now have muscle weakness all over my body. I also developed lightheadedness and the whole body feels wobbly, slightly like not my own, and extremely heavy - like lead - like something pulling everything down and a big elephant is sitting on my chest. Jumping and running are almost impossible, I feel just pinned to the ground. Any household chore makes my muscles hurt.

i find it hard to stand - it is more difficult to breathe that way, and my movements seem odd. I noticed it became more difficult to type as if I just came back from walk and my hands are bit stiff from the cold.

also after pregnancy I constantly feel the urge to wee - and when I go only small amounts come out.

UTI has been ruled out, my thyroid function is normal, my vitamins and full blood count are normal.

Help! My weakness progresses so much I find it profoundly difficult to look after my baby, not mentioning that I am wondering what is going to happen with me.

is it a muscular dystrophy, some progressive disease? Has anybody felt anything similar? So scared of something serious and just wanted to see if there are any other possibilities rather than horrendous diseases?

thank you for all who spares a thought ❤️

Glad you got answers in the end @WishingMyLifeAway .

Thank you ❤️

@TheYearOfSmallThings i know you probably mean well but I am sorry to say you don’t situation with my baby. His muscle tone is not totally normal which was validated by a paediatrician. He also has gross motor skills delays - he only held his head up at 4 months and not sitting yet at 7. So forgive a very tired and worried new mum who at at point was told by neurologist that she has muscle wasting and md is a possibility.

Thank you all, I do appreciate all of you who has been so understanding to a stranger across the internet. I will come back to update in a couple of weeks after I have had my follow ups but just wanted you to know that your support really means a lot.

@TheYearOfSmallThings also I don’t think that anyone on this thread mentioned MD tbh. That was my neurologist…

@Wobblyheart just been reading this thread and just want to reach out. It sounds so tough. I'm sorry I can't give any advice but I'm keeping everything crossed that things improve for you 💕

Are you still on the nhs list for a emg?

My son had low muscle tone and delayed gross motor skills. He is dyspraxic just to show there is a whole host of things that can cause that.

thank you. I went private for EMG. My son has been referred to pead neurologist under nhs but as a routine case when he was 10 weeks old but we were told current waiting times are around 30 weeks.

I think it sounds like joint hypermobility syndrome, and could affect him.

No 'treatment' as such other than physio/movement and psychological therapy -having had both it is amazing what can be overcome with them.

I really do think that you need to work on the anxiety first though

My son was under paeds from 18 months but he wasn't diagnosed until 6 by OT. His musle tone and hypermobility will never improve. He has OT therapy at school.

@WishingMyLifeAway thank you so much for your thoughtful post. I haven’t got energy to articulate that as perfectly as you did. I feel understood. Sometimes it is a very lonely place to be so I appreciate your reply more than you know.

How are you doing @Wobblyheart?

Thinking of you x

Also thinking of you @Wobblyheart

I know you said previously you'd had your b12 level checked but all your symptoms sound exactly like chronic b12 deficiency- air hunger and feeling like you need to sigh or yawn to get air in even though you can breathe normally is a really characteristic symptom.
i would really urge you to pay for an active b12 test privately - nhs don't routinely do it but it's much more accurate and specific in picking up b12 deficiency. B12 deficiency has a history of being misdiagnosed as MND before because without b12 you cannot produce myelin which coats your nerves and allows them to send messages effectively so it has wide- ranging neurological effects.

Although I agree wholeheartedly with getting a B12 test, because many of us have deficiencies in it, I disagree with the Active B12 test. It's next to useless. The older B12 tests with bigger range are actually better. The trouble with trying to measure B12 in serum though is that tests don't account for the non-functional cobalamin analogues of B12. B12 is fearfully complicated, unfortunately!

@CrunchyCarrot , @MrJollyLivesNextDoor thank you for thinking about me. Unfortunately, I getting worse. The fatigue is overwhelming and I now also have difficulty swallowing. My reflexes increased but neurologist still did not think it was MND. I hope he is not mistaken but I can’t see what else it can be at this point. Both muscular dystrophies and miasthenia gravis were excluded. I still have days when I think maybe it’s anxiety plus lack of sleep plus post covid but I know my symptoms started well before covid. I am so scared. I am struggling - I am speaking with counsellors, a new gp, etc but nobody can really help me. I am seeing a specialist in London but also not sure what’s the point in anything anymore. Nothing else matches rather than MND and I am just completely depressed.

And before anyone says anything it’s my physical condition that is making me depressed and not the other way around. I have a wonderful life and all my dreams came true - and now it’s slipping away.

Oh bless you OP what a nightmare.

Have they said why they don't think it's MND?

It's a positive that they don't think irons MND, because at least when you get to the bottom of it there should at least be treatment available. Try to hold onto that if you can.

The PPs point about B12 is interesting and definitely worth investigating.
I hope you can get some answers and a breakthrough soon x

@Wobblyheart If you feel like looking through these accounts of various peoples' diagnosis of MND then take a look through these. Very different experiences. Not easy to diagnose as it's more a case of eliminating other possible causes.

https://healthtalk.org/motor-neurone-disease-mnd/path-to-diagnosis-of-mnd

Really hoping you get some answers soon.

@CrunchyCarrot thank you, it’s really scary to read - some of the stories align too well with my symptoms…. The feeling of heaviness especially. I just feel like my whole body is lead and is being brought down by additional gravity. It’s horrendous and I can’t get away from it. It’s not just the normal tiredness, it’s like I have to work 10 times harder just to sit or stand.

I'm so sorry @Wobblyheart - it is tough to read. It does confirm that diagnosis isn't necessarily straightforward or quick, sadly.

Just wanted to ask if your autoimmune tests came back, if so did that include thyroid tests?

I’ve nothing to offer other than my positive thoughts and good wishes. X x

@Wobblyheart how are you doing?

Yes I keep thinking of you too! I hope you are ok