Muscle weakness - anyone else? So terrified

[Wobblyheart]

Hi all,

so when I was around 7-8 months pregnant I noticed a strange sensation in my arm - like laxity - loosenes... similar to when you just carried something heavy and then stopped and muscles feel really light with a kinda bounce ...

I shrugged it off. After I have given birth things started to deteriorate - basically I feel like that in my whole body, a bit wobbly and unsteady and muscles are very very weak. And now I am also having patches of skin with tingling and numbness....

terrified about MND..... but hoping it might be something else, something less scary.

I also have really bad fatigue and lost a lot of weight :(

I am seeing a gp about this, my thyroid and vitamins are okay. I just want to cry as worried I am now going to die from a degenerative condition. I try to have my thoughts under control but it’s not easy when you experiencing symptoms 24/7. Just want to be with my baby and see them grow up 💗

I had weird numbness and tingling. Every time the baby slept on me I lost sensation in one of my legs! One year on I still get it sometimes but it's a lot better. Gp put it down to spinal injection and all the hormones/fluid retention and so on. You are bound to feel tired and hormonal and a bit crap after birth, so it might be nothing and you just need to give it time. On the other hand, weight loss sounds worrying and you should definitely seek medical advice about all of this - just to be sure. Hope you get some answers x

Forgot to say I am 5 months post partum!

@catsnore thank you for your reply. By spinal you mean epidural? I had it too but my symptoms started whilst o was still pregnant.... And yes, working with the gp to get to the bottom of everything but started to feel this fear is ruling my life now

Bump, anyone at all?

Horrible for you to have this hanging over you OP. I can sympathise with the all consuming anxiety as I have experienced it myself on many an occasion over various health issues.

What steps is your GP taking to investigate this? Is there any talk of an MRI or muscle testing? I’m wondering about MS as a possibility here, and interestingly the postnatal period is often a time in which it first manifests itself.

I'm not sure exactly what I had as it was post partum so I think it was a spinal injection, not an epidural. (I was quite out of it). GP was not overly bothered by any of my symptoms and just said to give it time.

Has your GP referred you to anyone? Or booked any type of scan?
One thing you could do is book an eye test. Friend’s niece was diagnosed with MS after an optician identified abnormality in her eye exam. Sounds scary but she is doing really well, leads a normal life, works f/t , just has treatment ( not sure what) in her local hospital every month.
Push your dr for tests as you need answers not a “ wait and see” situation.

Thank you everyone, gp ordered an array of bloods including autoimmune ones. My full blood count, liver, thyroid, bone, vit b 12 and electrolytes all normal. Just waiting for autoimmune ones. Also had a brain mri yesterday, now waiting for the results. I don’t think it fits with MS - I mean symptoms are similar but not sure about presentation... as it’s been going on for a long time now without getting better. I am not too scared of MS, I am worried about alternatives that are even worse...

ive also got myself booked in for a private neurologist but it’s not for a few weeks so thank you for keeping me company.

worst thing is that everyone just thinks that I am depressed and my anxiety causing the symptoms, whereas it’s complete opposite - the symptoms are making me depressed and anxious as the way I feel completely disrupts my life and it’s constantly there so no getting away from it.

Hello I am going through something similar albeit as a 60 yr old, previously really fit and active (exercising daily, gym etc) whose world seems to have shifted after a head injury early Feb which may or may not be the cause of a whole bunch of worrying symptoms - leg weakness (as if I have to remember to walk), strange discomfort around jaw/neck, intermitent tingling in limbs, numbness on one foot, feeling of huge downward pressure on limbs, feeling like I'm on a boat, general aggitation and weakness.
My head was slammed very hard by a door in a toilet cubicle in a restaurant (not on purpose but if I could find that woman now !). No worrying signs at first but dizziness started a week later.
Endless gp visits, then a private Neuro refferal later, my general neuro checks have been fine, as was a head scan but as I seem to get no better despite rest etc I have gone down a rabbit hole of googling MS/MND etc thinking the head injury may not have been relevant.
I'm booked for a brain / neck mri next week but am sure the Neuro is doing it to placate me, she is diagnosing Post Concussion Syndrome and I am still worrying that the worst diagnosis MND is not picked up by mri.
To add to the fun a raft of blood tests have been done, mostly normal, but an 'incidental finding' of a low level of paraprotien in my blood, plus larger than normal red blood cells, low white..has set them doing more tests to exclude nasties such as Multiple Myloma, terrifying in itself.
I'm literally in a state of constant panic and well aware that can cause these types of symptoms.
To make matters more complex my only child - my daughter is at uni, has ocd and is going through a big bad patch. I'm her 24/7 support line (literally just put the phone down to her sobbing), and that in itself is hell.
The gp has prescribed low dose Propranolol for anxiety (just took the first one after call from DD short while ago), and I am contemplating CBT.
Prior to this life was good and happy, now I obsess constantly about the worst things happening and feel as if I'm diminishing.
I am totally witjh you on the constant worry of the symptoms causing the anxiety, not the other way round. Good luck with the blood tests and Neuro appt Wobblyheart. I stll await many of my auto immune blood test results too. It's a v scary horrible time and I'm right there too.

Hey! Did you ever get an answers x

@SB1990 i am afraid not yet. Really worried it’s MND as seem to continue to slowly decline. Going back to see a neurologist and some further tests soon.

Hello. Hope you are doing ok! Did you ever get to the bottom of the cause of this? I could have written it myself and I’m awaiting an MRI… 😬

@Alwaystryingtoohard hi, I haven’t got to the bottom of this I am afraid and many symptoms are still with me, however I am feeling tiny bit better. I have just updated my other thread which you might find helpful https://www.mumsnet.com/talk/life_limiting_illness/4765924-help-anyone-recognises-this-strange-illness?page=7&reply=127630044

When is your mri? Is there something in particular that you fear? Let me know if you have any questions and I will happily share anything that could be of help. I know how hard e not knowing is xx

Thank you so much for replying and for sending me the link to your other thread. I am glad you’re feeling a little better! I can imagine you are going through hell trying to figure this out with all the tests you’ve had not leading to an answer. I’m so sorry for how hard this is for you.

My MRI is a week on Monday. I have no clue what’s wrong with me, my right arm and leg I keep either losing sensation in or getting strange, indescribable sensations and I have hypereflexia in them too. Feels like I’m walking in space with my right leg. These sensations just come and go, sometimes over hours or days. Utterly exhausted sometimes, becoming depressed. This started about one month after giving birth to my second child, so 3 months ago. I have had terrible anxiety for a lot of years and finding things very stressful with 2 young children and limited help, and I’m not sure if it’s linked to that but obviously it could be something more sinister like MS couldn’t it. I’ve had loads of blood tests that have come back clear 🥴 It’s just such a lonely and frightening time isn’t it when you know you’re not right but you don’t know why and no one understands or can help.

@Alwaystryingtoohard I totally get where you are coming from and it was me (still a bit but by far lesser degree!) just a month ago. Funny - my problems are body wide but left arm, hand and foot are definitely off. Especially my left hand, it’s sort of numb feeling but from within.but I also had patches of skin where I sort of lost sensitiviy. It’s really bizarre and my symptoms mainly being called ‘hard to explain’. I do feel that there is some prejudice towards young women, and especially young mothers as everything being put down to pnd. what I would say is good gp is a massive bonus. How are your gps? If you are not totally happy I would suggest to look for another practice and make sure you Google their CQC rating, I have changed from a practice that ‘required improvement’ to an ‘outstanding’ one and the difference is massive, even though my main new gp still thinks it’s likely to be just medically unexplained symptoms. I would also say that if you are ever asked how would you feel if you never have a diagnosis to say that you don’t care about diagnosis you just want to feel better.

i see you are worried about MS,I get it’s a really big worry but these days the meds are quite good for it so if (big IF) it ends up being that you are likely to be okay. I am not a doctor obviously and can only speculate but from reading masses of forums (this is so not scientific though!) I saw many people with ms mentioned that they either started with or had visual problems. Did you have any problems with your vision?

Its good that you have the mri soon - is it done via gp or a specialist? Hang in there,and remember even if they find something in mri it’s actually not the worst news and things that are caught on mri are usually treatable / manageable. But most likely, like me you have a case of burn out, postpartum imbalance, worsened by anxiety. Have they tested your vitamins / ferritin / thyroid?

feel free to message here at avg point or dm me, I know how shitty this situation is but I learned that most often than not it is not what we think it is and most likely not the worst scenario our panicked minds create.

Are you breastfeeding? Are you eating enough? I did not eat enough in g to e first two months postpartum and I think that played a big role in my current situation as my body just can’t properly recover because the demands on it are still very high (my baby still wakes up 2-5 times per night).

Thank you so much for your reply again.

My GP is actually quite good and was very quick to acknowledge the problems rather than just sort of saying come back in 3 months like they usually do! The MRI is at the hospital and then I think a consultant looks at the results. I have had a few vision problems but to be honest I wouldn’t say anything notable, probably just from tiredness so I hadn’t thought much of that. I think you’re most likely right, I feel completely and utterly burnt out, stressed out of my mind all the time and constantly on high alert for who’s demanding something next and the impact that’s going to have. I am still breastfeeding the baby but my toddler is a great eater so any time he eats, I make sure I eat too so I do get time to sit and eat. That sounds really hard waking up so much, my baby usually only wakes up twice but five is a lot. I’ve been there with baby number 1 and he woke up so much, he sleeps well now (I moved him to a floor bed, life saver!) and maybe only shouts me in a couple of times a week at the most for something he needs so it definitely gets better! Thank you again and I appreciate you saying I can message you, same to you!

That’s great that your gp is on the ball, @Alwaystryingtoohard. The advice I had when I was waiting for various appointments that sort of helped sometimes is to take it in chunks - so just focus on making it through to the mri, then to the results etc. one step at a time.

Also, there of course might be something going on besides being exhausted, but it is more often not what we think. And quite often something very treatable or manageable. I used to think I knew a lot about illnesses etc and last year has proven me so wrong, I have discovered there are hundreds of conditions I never ever heard about and one really rare one (intramuscular myxoma) that I have! Hang in there, and whilst sleep matters I would also spend 30 mins an hour watching something on nextflix when both kids are in bed to distract yourself and decompress. I admit Bridgetown and queen Charlotte have been my guilty pleasures. let me know how you get on and best of luck xx