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 ❤️

Thanks to everyone who replied as well regarding vitamins - my B12 seems adequate: Serum vitamin B12 level 378 ng/L [187.0 - 883.0], but I have been wondering about iron too, it just stays around 30-40s... GP said that it would not be causing such symptoms but seeing how many of you thought it might not be optimal I might try tablets.
it does not explain my neurological symptoms but perhaps that could make fatigue / shortness of breath better.

as a small update, had some of the bloods back. Muscle, bone, liver profile, urea and electrolytes, diabetes, CRP, full blood count all normal. Also tested negative for rheumatoid arthritis. Waiting for other autoimmune markers and the results of brain mri now.

I think you possible have an auto immune condition but that doesnt mean your going to die. My DP contracted reactive arthritis 6 years ago after our DD had a viral infection. He went from a strapping young man to almost cripple within a few months he could barely walk use his fingers it was like watching an 80yr old and his MH took a massive downwards turn. But he has worked tirelessly with doctors and been on many different types of medication but we got there. He is now pretty much back to normal weekly injections probably for the rest of his life but he can jog swim use his hands and he isn't going to die. Keep positive yours could be just as good an outcome.

Your iron is too low. It may be ‘within the range’ but that doesn’t mean it’s within YOUR body’s preferred range as we are all different. And if a stingy GP doesn’t want to prescribe you can buy it as you’d probably feel better if your levels were over 80. That’s what they’ve said on here in the past re people with hair loss and tiredness etc.

Id take an iron supplement for a month and see if it helps at all. It will presumably do you no harm as you are not near the top of the range. A month would be a good trial?

You should see a difference by then. I feel VERY much better on supplements. Don’t underestimate it! I’m a new woman on that.

I have PM'ed you, WobblyHeart.

I personally do find it easier having this diagnosis, and therefore medication, than the years before when I had so many problems untreated, and no answers.

I would have vitamin D levels checked. Vitamin D is not only a vitamin but also a hormone. Very low levels can cause your symptoms. Very low levels need to be addressed very urgently. It is easy to check with a bloodtest.

ive never hoped for scans to find something wrong until now. But they are normal. my Brain MRI is back and reported normal. I should be happy should not I but this terrifies me even more. Does it mean that neurological/ MND cause even more likely? Will need to wait till some of my other bloods are back and will be calling a gp to try and find out what it can mean but feeling rather down now.

I understand that,.it's a horrible long slog for answers sometimes

Have they ruled out MS?

How long will your other bloods take to come back?

Could you see your GP in the meantime and express your concerns?

Bless you OP this must be very difficult 💐

@mamaison could I ask you when you have flare ups do you ever feel some muscles tensing up? I am really hoping I might have this rather than MND but there are several muscles , especially thighs are just so crazy stiff like never before in my life and easily fatigued upon any movement.

I also reviewed all the links and tried to do the test on my limbs and I can lift my pinkie at about 80 degrees and almost touch my forearm with my thumb but that’s about it...

I also immediately thought autonomic dysfunction secondary to hypermobile ehlers danlos. I truly thought I was dying before I was diagnosed and it affected every system in my body - nothing worked properly. Every test and scan came back normal until I started doing autonomic testing.

I'd second PPs' suggestions to go and see NHNN (Queen's Square, London) and take a closer look at B12 if you can, too.

I went to shave my armpits (sorry for tmi!) and just could not rotate the razor with my left hand. Something I never had problem with before. I am just so sad, I am guessing this now points more to MND than anything else. I am sorry to be posting here again, I just find it. My husband is in denial and I can’t speak about it to him, hi just shuts down. He is a wonderful person, a perfect dad and husband and it’s not his fault as we had so many stresses and problems recently but I find it so difficult that I can’t discuss it with him. It’s tearing my world apart. I am absolutely broken today.

@Wobblyheart I'm so sorry you are going through this. I was under the impression that MND starts in one place and not full body weakness like you described! Although i'm not medically trained so I could be wrong. Is it something your doctor has mentioned?

Yes I do get terrible frozen muscles. They are trying to counteract the overly flexible connective tissue. The stiff muscles try to add stability. I have had it in my thighs before (was released by women’s health physio) but usually it’s my shoulders and neck.

@mamaison thsnks for your reply. And do you ever get twitches and being breathless? I have started widespread twitching and now think probably it is MND still. I want to crawl, cry, and wake up to a better health.

I know someone who had similar symptoms. Her diagnosis took years but in the end she was diagnosed with LEMS disease. So maybe take a look at that.

@SonnySideDown thank you it does sound really similar. So many different rare conditions that we don’t have a clue about! Am seeing a neurologist next week, trying to keep some remnants of sanity till then

Yes please do, hopefully the neurologist will be able to give you an idea of the next steps of investigations.

All my blood tests have been clear but I was diagnosed through an electrical current test (EMG)

My first neurologist appointment was quite brisk and he made me do lots of different movements (like flapping my arms like a chicken ) and didn't say much, but I realise now that he was assessing all my physical symptoms and that's part of the diagnostic process. At the time though I said to my children I thought he was maybe a party entertainer who had come into the wrong room

LEMS and Myasthenia are both supported by Myaware which is an excellent charity and they gave me lots of support even before diagnosis

Just popping in to wish you well, OP. It's very scary when you have odd symptoms and have no idea what you're dealing with.

The breathlessness or 'air hunger' is often associated with hypothyroidism, as are weak muscles, backache. Pins and needles and numbness, twitches can be associated with B12 deficiency. It does sound that there are other things going on additionally, too.

Hopefully you will find out soon, then you can at least 'make a plan' and find out as much as possible to help yourself.

When is your appointment @Wobblyheart?

Keeping everything crossed for you x🤞

@MrJollyLivesNextDoor the neuro is on Wednesday, but I am certain it’s MND/ALS now. My face changed, speech, and my left pinky finger started losing function. I can’t bend it in a certain way no matter how I try and it curls a bit on its own in a certain position. Breathlessness is worse and lump in the throat too. I am devastated. I need to ask for help with my baby as I am not managing physically anymore, but feel like I can’t because I haven’t got a diagnosis. I don’t think I can cope with this all...

Thank you for your ku d words. I think it starts different for everyone and it did start with my legs first, it was just very minor. I also read accounts of similar people with als and this presentation occurs quite a bit. I wish it didn’t. I do appreciate your words though, and everyone else’s. it helped me to function for the past couple of weeks and gave me hope I needed.

No advice but wishing you all the very best