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 ❤️

That is very interesting, thank you for the link. I was especially surprised to read about quick labour as that’s what I had. Dialated so dramatically quick my baby went into distress. However a lot of my symptoms still don’t quite fit - I don’t have pain as such more exhaustion and odd / lax movement and muscles that tire quickly. It also doesn’t explain shortness of breath.

Perhaps moyotonic dystrophy?

The shortness of breath could be explained by POTS www.nhs.uk/conditions/postural-tachycardia-syndrome/
which is linked to hypermobility www.potsuk.org/about-pots/associated-conditions/hypermobility-and-pots/

I myself am not always in pain, but the laxity of the connective tissue means I tire easily, as the muscles have to work harder to make up for the lack of stability.

Just putting it out there as this is not an uncommon condition but can cause a great deal of symptoms that are better or worse at different times of life, hormonal situation, weather etc

A rapid labour could have contributed to pelvic floor problems which could cause the bladder issue. A urogynae would be able to determine this.

I have MS and your symptoms are not like my experience of the disease.

OP you mentioned you've been through some stress lately. Can you book a week long minimum holiday somewhere super relaxing and calm? Maybe by the coast somewhere beautiful you can take your foot off the break a little bit. That was what made a real difference to me when I went through a similar situation. That helped me turn it around and realise how linked it was to stress. I am not saying your condition is definitely stress related but taking a long relaxing break could really help you work out if it is related. My symptoms included shortness of breath. I looked into everything including lupus etc. I think were are some crossover of symptoms with autoimmune disorders but they were stress induced. Maybe a holiday could help you work out if it is a contributing factor, if you're able to do that.

I had something similar but it's partly still ongoing with no diagnosis.

What is your vitamin D level?

@Wobblyheart have you had a blood test to check your B12 levels! I know it sounds like something so simple but your symptoms seem to fit. It can cause some really serious neurological symptoms, shortness of breath, weakness, fatigue and also depression etc. A family member of as experiencing shortness of breath, pins and needles and vision problems recently and that came back as the cause. A course of B12 injections has drastically improved symptoms.

@IncessantNameChanger do you have any balance or movement issues?

@Stargazer89 my vit b 12 levels were checked as well as other vitamins and ferritin and all normal unfortunately

I just wanted to thank everyone who took time to reply. There are a couple of interesting suggestions but I still fear that I don’t fit most of the things described.

i now need to try and go on until I get my bloods back, I will update. Something inside tells me there is something very wrong with me. How do I summon the courage to get through things.... I find it physically so difficult, and have a 5 month old to look after.

today has been rough as I get more and more inclined to think it is progressive neurological disease, Multiple systems atrophy. This just fits too well. Not a single
thing that does not fit.

I have Myasthenia Gravis. It was a long slog to get diagnosed and a long the way I have come across a lot of people with various conditions and I really recognise your struggle to work out what it is.

I would say definitely keep pushing, make sure you check all the test results that come back..and that negative bloods /test results don't mean that you aren't ill. I have seronegative Myasthenia, diagnosed with single fibre EMG test but I have heard of GPs not referring to neurology if the original (v basic) myasthenia blood tests come back negative. Not saying you have myasthenia, but just that it is definitely worth pushing for a referral to specialists

I had a buzzing sensation in my leg, I had a nerve conduction study and mri. Think the nerve issue is some degeneration in my spine but to be honest I don't really know and I'm still having tests. But the vit D did help.

My first spinal MRI was cleared. When I then had optic neuritis and brain leisons found they looked at my first MRI again and found a lesion in my neck. I’ve been diagnosed with MS 15 years now. Push for another MRI?

Wilson's disease?

Do you know what your actual b12 level was? Some places in this country have a very low threshold for 'normal' and you could well have symptoms even while within range.
your symptoms sound very similar to what I experienced with b12 deficiency. I had such odd feelings in my legs, like they were made of lead and just didn't respond when I was trying to get them to move. I remember lying on the sofa trying and trying to get my arm to lift up and it just wouldn't.
not uncommon to be prompted by pregnancy, especially so if you have gas&air.
B12 deficiency affects your nervous system so can cause widespread neurological symptoms.

I would seriously look at taking some otc iron supplements. The range for normal is (fucking typical) that that suits men - and women need to be higher. So your 40 is low. And OTC decent levels (try these
www.easymedshealth.com/products/ferrous-fumarate-210mg-iron-tablets-packs-of-84-multi-quantity-listing?variant=18073531613274&currency=GBP&utm_medium=product_sync&utm_source=google&utm_content=sag_organic&utm_campaign=sag_organic&gclid=CjwKCAjw5dqgBhBNEiwA7PryaP4JQnXoUeoijfbX5TdVV8yEtHwIji1Sdy9d_e3AkxolXXoIZWCJARoCBDUQAvD_BwE )

Take one or two a day to get your levels up a bit then maintain with one.

I had all kinds of shit going on when my iron was low (albeit "within range").

Please don’t try to self diagnose. Symptoms can sound similar for lots of different things. You might be worrying about a disease or condition which you haven’t got! Please go to see the GP.

@mamaison

I was going to suggest this too I think I have it (self diagnosed of course) but as I cope I've never bothered a dr, really can't deal with hospitals. Dsd has it we think, slightly different kind (there's quite a few variations identified)

you may be considered low on the iron scale. But that doesn’t mean your body thinks it’s ok. It might be that it’s TOO low for you so you need more iron, so I’d get supplements.

iron is supposed to be 80 something to have healthy hair growth. so you are well below that.

we all need vitamin d3 supplements in U.K. over winter. Start that too. I’m in 2000 something a day. (Get mixed up with micrograms etc and other measurements, it comes in 1000,2000,3000s tablets or sprays).

Hi OP,
Do look a little closer at B12. Levels can be hard to measure accurately. It's all beyond me but something to do with folic acid I think and levels can appear OK but not be - probldms masked in some way. Investigate deeper.

If you are vegetarian or vegan or have gastric issues you are at greater risk of low B12.
If you had gas and air in labour (or for people that use it as a recreational drug) can make levels dangerously low.

If you exclusively breastfeed and have low B12 that deficiency will cause uiur baby to also be deficient and be damaging to them.

If you have problems absorbing B12 in the gut you would need injections.

I think it's worth looking into because if it is the cause your solution is B12 injections and the sooner the better.

I would urge you to try and get an appointment.

Fingers crossed for you OP 💐

You sound enough like my symptoms that I would recommend being checked for ehlers danlos syndrome, thoracic outlet syndrome and POTS. It took until my mid-40's to get answers.

I had very similar to a lot of what you describe, OP, and was assessed for Muscular Systems Atrophy as my symptoms fitted that. But it was Young Onset Parkinson's Disease, which is far preferable, as something I can live with. The symptoms have a lot of overlap but "straightforward" Parkinson's Disease is far more common than Muscular Systems Atrophy. I offer this experience as I can remember being so worried, as you are, that it was something worse.

It took a while to get diagnosed, because although Parkinson's appears to be increasing in young women, no one expects it. I have found the medication helps greatly with mental health, balance, dizziness, muscle weakness, bladder issues, orthostatic issues, the "strange" feedback your body can give you and it somewhat helps with fatigue.

You can test normally for B12 but that doesn't mean that your body is absorbing it correctly. Can make you feel really ill. Also check for lupus. Both hit me after giving birth. Please get some B12 injections not pills.

I had the shortness of breath and the heavy limb feeling - it was low iron. Took iron for 4 months and felt like a completely different person. Blood tests aren’t 100% accurate. You may have low iron. I would take supplements if I were you. You can get ferrous fumate over the counter at the pharmacist. Worth a try.

@horizontilting thank you so much for coming on and sharing your experience, I really appreciate it. And I am so so sorry to hear about your diagnosis, you have been through so much to get there. I am so glad
it wasn’t MSA in your case. And so good to hear that the medicines are helping.

you are right, I am incredibly terrified of it... mainly because now I think back and think that I had some urinary problems few years ago and now I also seem to have orthostatic hypotension. I am not falling over or fainting but it goes down about 20 points on standing after laying down.

Could I ask what were your initial symptoms? Also, we’re you assessed for msa at you local hospital or in a regional centre elsewhere /London?