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 ❤️

[Wobblyheart]

Just to add I think I have become a bit clumsy too, my GP is investigating this, just dropped off bloods for lots of different things including autoimmune but my mental health has taken a rough beating so hoping to find some hope in others stories. Thank you

[lljkk]

Do you have other risk factors for getting out of breath easily? How underweight are you now? Is your iron level good?

[Wobblyheart]

My iron levels are okay - low but not abnormal (ferritin of 40 ug/L with normal range between [23.0 - 300.0]), no other predisposing factors. My BMI now is 18. I have been trying to put weight on but with no success. I also think that my muscles have become thinner.

[Wobblyheart]

I also had a chest x ray done which was clear so it feels to me like it’s my weak muscles that are affecting my breathing

[MaverickSnoopy]

I'm not saying it's iron but personally I would be taking iron supplements to see if raising your levels helps (you need vit c to help absorb). Has your GP looked at fibro?

[birdshavingabath]

maybe functional neurological disorder?

also OP are you under any stress? as a LP without support I was really ill during the early years possibly linked to all the stress I was under at the time. Might be linked. I had dizziness and other horrid symptoms, weight gain, weird muscle things etc. Seemed to pass when life was less stressful.

[mamaison]

Could you have hypermobility syndrome and have related POTS and perhaps pelvic organ prolapse/dysfunction following pregnancy/birth? Are you breastfeeding and don’t have your periods back yet? That could make it all worse than it was before baby.

[Wobblyheart]

Thank you, my iron levels are okay, and I taking multivitamins as I am breastfeeding so this is why it is still so much more worrying

[Wobblyheart]

Thank you for the suggestion, I will look into this and it does sound like a possibility. My husband thinks it is stress related as well, I did have an enourmous amount of stress recently. However, whenever I was really stressed before, even when my dad died unexpectedly I never felt the movement problems which is what is worrying me most at this moment, thinking about MND. The symptoms are relentless and are always there, no matter how much sleep or rest I am getting.

[Wobblyheart]

Oh I have never heard of this, thank you, this does sound a little similar... but unsure why would it only come on during pregancy... but indeed maybe hormones are at play too. Still breastfeeding although transition onto formula and no periods yet.

[Floralnomad]

Have you looked at Myasthaenia Gravis ( spelling may be wrong ) , might be worth a look as that affects people in different ways .

[Ragruggers]

Can you get an appt.at The National hospital in London.Iwas admitted there many years ago after seeing so many doctors who couldn’t help.It is a centre of excellence of neurology.Good luck.

[Wobblyheart]

@Ragruggers i have made an appt with a private movement disorder specialist privately, but the wait is one month,
I think I will start to go mad! Thank you for letting me know about the London clinic,
I might consider that as I need to travel to London for something else soon.

[Wobblyheart]

Thank you, I did - but it does not sound like me - my face is not droopy although I lost some sensation in my skin.

I am afraid the only condition that fits 100% what I am experiencing is the one I am dreading the most - it’s called Multiple Systems Atrophy and I am just desperately wanting it to be anything else that could be curable or managed better

[ODFOx]

Have they checked for MS?

[Amboseli]

My thoughts are MS.

[Steakandquinoa]

MS was my first thought too. So sorry you’re struggling.

[Wobblyheart]

I have had full spine mri done back in 2021 which was clean. I also read that with relapsing MS you have periods of remission and I just seem to be progressing. Of course it could be the primary progressive kind I suppose.

[Crumpetdisappointment]

can MS come on after pregnancy?

[Xrays]

Google adrenal insufficiency / Addisons disease. It’s very rare but easily diagnosed or eliminated by a morning cortisol blood test. (This is not the same thing as adrenal fatigue - adrenal fatigue does not exist, you either have low cortisol and therefore Addisons / adrenal insufficiency which needs treatment with steroids or you don’t). This won’t have been checked for as part of your routine bloods. It’s more likely if you have ever taken courses of steroids for other conditions - ie causing secondary adrenal insufficiency- but some people get primary ai / Addisons as a stand alone autoimmune issue.

[WeeOrcadian]

@Wobblyheart

I have had full spine mri done back in 2021 which was clean. I also read that with relapsing MS you have periods of remission and I just seem to be progressing. Of course it could be the primary progressive kind I suppose.

You state your MRI was clear - surely you realise that signs of MS would show on your MRI?

[tanksgoggle]

Following

[mamaison]

@Wobblyheart

Oh I have never heard of this, thank you, this does sound a little similar... but unsure why would it only come on during pregancy... but indeed maybe hormones are at play too. Still breastfeeding although transition onto formula and no periods yet.

It would come on during pregnancy due to the hormones and the laxity. The lack of periods and breastfeeding would continue the exacerbation of symptoms.

www.ehlers-danlos.org/information/pregnancy-birth-feeding-and-hypermobile-ehlers-danlos-syndrome-hypermobility-spectrum-disorders/

I have this and it is much better when I am ovulating (or on a combined pill at least). My symptoms wax and wane with my menstrual cycle. They were there before pregnancy but manageable.

It could explain the bladder issues, POTS like symptoms, cold hands, clumsiness. Anxiety is also a symptom. It’s diagnosed by a rheumatologist.

[Wobblyheart]

That was almost two years ago but I do feel that MS does not quite fit anyway as the weakness I have is bilateral...

[Wobblyheart]

are you experiencing something similar?