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 ❤️

Me too, @Wobblyheart

Hi everyone and thank you for your messages. Yes, all of my bloods came back including thyroid and autoimmune which were all normal. They did several autoimmune profiles - I think it is a wide net but still standard ones.

I have seen the MND specialist in London who said no MND and that he thinks that my issues are anxiety related. I felt relieved but even with the relief from the appointment physically I see no improvement whatsoever. I am also on anti anxiety medication but I still have muscle weakness, especially in the left hand and leg, breathing problems and fatigue. I am waiting for the results of my lungs function / breathing muscles test. And don’t quite know what to think anymore.

i also have a new gp who said they would go through my history in detail to see if anything was missed, for now we supplemented with iron as was my on the lower end of normal but also no improvement.

I know that some of my symptoms are most likely exacerbated by anxiety but struggling to see how coordination issues and problems with left side of my body could be anxiety. Surely if it was it would be affecting both sides equally….

I am even back to thinking whether it could be that my lump is not benign after all and it is some sort of cancer syndrome but I honestly don’t know what to think anymore. I am trying to put my worries behind me and give myself time to feel better and if no improvement in three months I will be going back to the specialists.

Just stumbled upon this thread. No medical advice but I wanted to wish you all the best, my heart goes out to you

Hi OP have you looked into functional neurological disorder? I seem to get some of the symptoms of this especially when under stress. Which in turn gives anxiety and makes symptoms worse. If there's a way you can chill out and relax for a bit like a good holiday, you might see if things improve a bit.

Have they excluded MS?

Good to hear from you OP

And especially good to hear the MND specialist says no! In fact that is really great news and I hope you will see a huge positive in that (even though I realise you still need to get to the bottom of it).

I hope you get some answers soon x

I was going to suggest FND too.

Google FND OP. It Sounds like you have had extensive testing done. I mean this kindly i really do, but on many of your replies you say different conditions 'fit the bill.' And of course you're worrying and panicking but it sounds like you're catastrophizing. Especially going down the cancer rabbit hole. Sometimes in life we don't always get a diagnosis. Sometimes it's really, really hard to believe that it's all down to anxiety. And if it is down to anxiety. Nobody is or will blame you.

I wish you all the best OP. But trust the doctors. It sounds like you've seen a number of experienced medical professionals and you've had extensive testing done. Take comfort in this for you and your boy.

From what I have read just now on FND, it isn't just down to anxiety.

We know that the symptoms of FND happen because there's a problem with how the brain is sending and receiving messages to itself and other parts of the body. Using research tools, scientists can see that certain circuits in the brain are not working properly in people with FND.

That means there is still some problem caused by an unknown factor or factors. Personally I would be going down the nutritional route to try to make sure my diet was as good as possible, because some of the things I am reading as symptoms can be explained by various deficiencies. Nutrition is pretty much discounted by doctors, so it's a case of having to figure things out for yourself, which isn't much fun.

Hi @Wobblyheart I read your posts and thought about Ehlers Danlos syndrome which in some cases does cause muscle weakness and atrophy [see here: https://pubmed.ncbi.nlm.nih.gov/19557868/ ]. It's also hereditary. I'm not sure if that's helpful but I just wanted to say I'm thinking of you and I'm so sorry you're in such a distressing situation.

Has myositis been considered by the neurologist op? It's very rare but my dm was recently diagnosed with similar symptoms

www.myositis.org/about-myositis/types-of-myositis/polymyositis/

I note you've seen lots of neurologists.

Has anyone ever mentioned hereditary spastic paraplegia?

It presents like MS and MND as well as CP in young children who show signs from birth.

You can get distal neuropathy with it that could explain the pain signals.

Hi everyone and thanks again for all the wonderful messages of support and the suggestions.

So it’s now been almost a month since my last update. I went on a high dose of anti anxiety meds, managed to put my worries about MND aside, especially after my lung function test which was normal, and as @medicallycomplicated said decided it is time to trust the doctors indeed. Not that I did not trust them before but I just had a nagging ‘what if something was missed’ feeling. I feel marginally better though still have a lot of issues. However this (even though only slight) improvement gives me hope.

I think anxiety definitely made symptoms worse, as did the poor quality of sleep for 9 months now. However I still feel there might be something underlining there. The GP reordered some bloods and I also got a private extensive blood test from medichecks to test across a number of things to see if it would bring anything up.

Nobody mentioned either hereditary paraplegia or myositis, however I think the latter would have been ruled out based on the EMG, NCS and creatinine kinase blood tests. As to Ehlers Danlos, I initially was thinking it could have been. I am a bit hyper mobile but not hugely so when I did the test on myself I wouldn’t score enough points to be considered hyper mobile.

My colleague who also went through ivf some time ago interestingly suggested to me that she was very early with her menopause and felt similarly. So the bloods I am going to do will have various hormones there, will see what it will say. Another thought is around deconditioning during pregnancy (I hardly did any walking, cooking food and getting ready for baby was only things I did otherwise I mostly laid down) and now I can’t get my fitness back because of compromised sleep, anxiety, further weight loss that I had end of last year (this has stopped now and I put about 5 kilos back).

I also had covid during Christmas and was very dizzy with it, perhaps some neurological symptoms from there or from a long history of anxiety that caused havoc on my body.

Overall, I am feeling more optimistic and not catastrophising anymore but determined to get to the bottom of this whilst focusing on looking after myself as much as I can.

I will update in the future when I find something out, but I just wanted to say huge thanks to everyone who contributed to this thread. You helped me through a very dark time. And I hope this thread will help someone in the future too.

love xx

@Wobblyheart It's so good to hear from you, and I think that's a positive update? Medichecks are good, I often use them for various blood tests.

If you've had Covid then for sure that could be throwing a big spanner into the mix. Also your remarks about lack of exercise during pregnancy. Perhaps it's a case of a 'perfect storm' of various factors that led to the symptoms you've been having.

I think the most important thing here is that you have changed your mental attitude, so happy to hear that! Please go and enjoy being with your family.

@CrunchyCarrot thank you and thank you so much for your kindness in the last couple of months. Your messages were so uplifting and I cannot overestimate how much it meant for me that somebody out there cared when some people around me in real life didn’t. I definitely feeling more positive, as so much testing has been done that I feel like many things have been checked so I just need to be patient and kind to myself and see where it leads me whilst still pursuing a diagnosis but not as a end aim. I just want to feel better , and if I do I don’t think I would care much what caused it.

Thank you again for all the support , you are such a kind person x

Thank you @Wobblyheart that means a lot. I've had a lot of years of chronic illness now which has opened my eyes to the millions of folks who suffer hidden from the mainstream of healthy people. I'd much rather no-one ever had to be in that position, but there we are. In some ways though it can be a blessing of sorts, because you learn to appreciate the small things in life that get passed over when you are well.

This is really good news OP. I hope you get to the bottom of it and keep on improving

@CrunchyCarrot i am so sorry that you have to endure it but sounds like your spirits are very strong and you also have amazing empathy and understanding of others. I think people who generally are healthy and feeling well (and never had any serious ailments) cannot understand those who are less fortunate. It is just impossible. They can try and imagine that but they can’t truly relate.

Hi op I have just stumbled upon your thread and had the opportunity to read all of your posts from the beginning to now where it now reads like you're in a much better place and hopefully heading in the right direction of being as healthy as you can for your ds. Next it is managing day to day as able as your body lets you be and rest when you can as being unwell means you need that little bit extra kindness to yourself. You've been through so much I am really pleased you are better than when you first posted. Please keep us updated. You'll be one of the op's I think about

So much love x

All those symptoms are B12 deficiency related. The elephant sat on your chest included! Do not take tablets which can give false high results. Get a blood test and injections via the nhs or privately.

I stumbled on this thread by accident OP. So much of what you have said sounds similar to my young adult son's illness, symptoms and fears. He has had investigations for MS/Parkinsons etc. nothing found. He has accepted that his illness is driven by his nervous system dysfunction and anxiety plays a massive role. It makes sense that your symptoms have ramped up since you had a baby, your fears are heightened by worrying about him as well as yourself. Have you heard of Gabor Maté? My son has been helped by therapy based on the work of Peter Levine. Good luck.

Just seen your thread pop up.
Sounds very much like what my brother has been diagnosed with.
We were convinced it was MND or MS but he's been given a diagnosis of functional neuropathy disorder. It is very stress related, but the symptoms are very real and debilitating.
Not a lot of help out there for it but he says there are a few helpful Facebook groups.
He's delighted it's nothing life limiting and equally as upset there's little help and he's not getting any better.

Wow @Wobblyheart! Firstly, can I just say that I hope you are doing ok now. Secondly - I feel like you are my twin!

If you search for my username on Mumsnet threads - you'll see I've had almost all the same problems as you and diagnosed myself with everything under the sun. When did it start? Immediately after the birth of my second child who is 4 in October!

I've had pretty much all the same tests as you...brain/spine MRI, nerve conduction tests, holter monitors, chest x-rays etc - everything comes back perfect!

But as time has gone on, more and more symptoms have developed and covid made it 100 times worse. Since had it 3 times now. So I fit the profile of a Long Covid sufferer too but like you, my symptoms preceeded the infection. I've had to be my own advocate and did see a neurologist who said he thought I might have small fiber neuropathy and I DEFINITELY have dysautonomia including the orthostatic hypotension etc.

My symptoms at the moment fit the profile of M.E/CFS - but it changes all the time. For me, I NEED to find the cause of all this. Can't accept that I was perfectly healthy and turned in to a shadow of myself. I'm a teacher and have two little ones so life is busy without all this on top.

I've decided to see a functional doctor in London to help me find the cause of all this. It's very expensive and I can't really afford it but what's wealth without health?!

Sorry for the long post but I really resonate!

Hi everyone, and sorry I haven't been to update earlier. Life has been really busy with me going back to work and baby crawling everywhere! Not much of update again I am afraid (feels like this thread will be a slow burner!), but what happened since I have last posted:

• There was a discount on an 'ultimate performance' blood test on medichecks so I took the plunge and results were mostly fine but did come up with slightly high testosterone and cortisol (the latter probably due to all the stress and bad sleep as not in so distant future (2021) I was tested for Addissons due to low cortisol!!). Iron, B12 are fine (and I was not taking B12 however I am taking ferritin). But Vitamin D came out as insufficient. I was very surprised because I asked my previous GPs if it was tested and they said 'yes& normal' but now wonder if they misheard me and thought I said vitamin 'B'... I would be gobsmacked if it is all there is to my ill health coupled with sleep deprivation. So O am on high dose of Vitamin D now and only in my second week out of ten for that so will see how that goes.
• I have just started feeling more unwell again though (not worse that I was at the beginning of the year) but not as good as the last few weeks. And I can't quite pinpoint to why it might be. This did make me spiral back to an anxious liability mess I am and my anxious mind started thinking again - what if my lump is actually cancerous despite the negative biopsy as there was one area on it that had a shadow..... and I was the one who raised concerns about my suitability for anesthetics because I did not know what was going on with me. The anesthetist thought I had muscle atrophy (as did first neurologist who said muscles were subtle!) and my surgery to remove the lump was put on hold. I am back on a waiting list now but it is a non-urgent list so I don't know how long it would be. Gosh hopefully my anxiety did not literally kill me. But I manage this worry most of the days, so the anti-anxiety meds are working and I am starting CBT now too.
• Finally, I am still questioning some sort of deconditioning during pregnancy and I will be seeking PT for that
• My new GP also confirmed I have prolapse (sorry for TMI but hoping this still can help someone in the future as it just shows that not all of the symptoms are always linked) and I was referred to a guided PT for this.

Sorry, this was rather a messy ramble, but I will keep you posted as and when I find out more. I am still in a much better place still and it would not have been possible without you all.

@zooopta - thank you so much, you are so kind xx

@ArthurPoppy - thank you, I did abstain from B12 but it was in range.

@CaptainClover & @Rowgtfc72 - I am so sorry to hear that you and your son and brother have these worries. I know too well how tough this spot it. And how much these days is chalked up purely to anxiety. I am glad that the specialist seem to think not MND/PD - that's a great start. I can see that both of your loved ones are accepting their diagnoses and I think it is a massive step towards healing. I would say however if he is still worries for me seeking a second opinion from a leading specialist specialising in MND was the one step (although expensive) that made all the difference. But I would also explore seeing a highly regarded NFD specialist in London. I think someone might have given some pointers, I will try to dig those up for you.

@Mumma02 I am so glad you reached out and wow! Unbelievably similar! Something in the air, huh???? I am convinced that mine is not covid related because my symptoms also started earlier than that but it could have made things worse, right? One thing I don't get pretty much anymore is the muscle twitching. It used to be persistent and incredibly widespread (my cheeks, lips, groin, fingers, toes, calfs, arms, abdomen twitched it was crazy!), now I am calmer, it's gone. Is it okay if I pm you, would be great to keep in touch.

@Wobblyheart yes of course. Would love to hear how you are getting on. I am about to embark on some further testing and I'm desperate for answers so hopefully we can help each other.

How big a dose of vit d are you taking ? You need to take it with cofactors to make sure it goes in the right place. Boron, K2, magnesium - there's a really good group on FB if you want a link ?