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 ❤️

I asked earlier in the thread have they excluded MS? Have you had an MRI of brain and spine? Sorry if I missed it.

I had full spine mri in 2021 and head mri recently, all clear. Also, I don’t have any vision problems so nobody explicitly said it was excluded but I don’t think it’s in the differential.

have u been checked for myasthenia Gravis? my niece was eventually diagnosed with this after her first pregnancy.

Thank you, yes, it has been excluded based on EMG/NCS.

@notapizzaeater please could I have the Fb group details? Sorry to jump on this I know you meant it for op, but it's exactly what I've been searching for recently!

Hugs to you op and to everyone else struggling with these various horrible symptoms

@Ivyy

m.facebook.com/groups/834499283599954/?ref=share

@CaptainClover , @Rowgtfc72 I went through all my previous posts and could not find recommendation, I think I probably imagined it. This channel might be of interest though, a very well regarded doctor in the US

I think also there are FND specific facebook groups in the UK but you might already be aware of that

Could it be Lyme disease which is known as the great imitator.

Have you ever been bitten by a tick?

Oookay.. so I figured time for update.

I have had my surgery two weeks ago to remove the lump. It has grown quite a bit since February but the surgeon was no more concerned than back then. It came away nicely and round.

Still feeling about the same as before, the vitamins don't seem to be helping but I haven't been very good at taking my vit D. Otherwise the weakness and weird paraesthesia in my lips, tongue, left hand Still there along with breathlessness and muscle fatigue and general tiredness. However my sleep is pretty terrible so I am currently chalking it all up to being ridiculously sleep deprived. After surgery though I continued to have hip pain and there is a sweeling that hasn't gone down yet so started to worry myself silly, hopefully it's not another lump. Waiting for pathology nervously.

For my son as I know there was a debate about it before I was not imagining things, just was wrong about the cause. So he is likely hypermobile (it is not diagnosed so early but neurologist noted that his ligaments are waaaaaaay more flexible than compared to an average baby). So he attributed his gross motor delays to that.

Hope that everyone is doing okay and enjoying getting into Christmas sprit. I just played Heart Christmas song on the way back from my dressing change ))))

Hi everyone, I just figured I would update with some good news as hope this will help someone perhaps in the future.

So my lump has grown very quickly since I found it and it did grow even more between the time of biopsy (February) and the surgery (September). I think it was about 3cm when I first found it in November 2022 and by September 2023 it was around 7cm. So very rapid growth.

I had it taken out by a wonderful plastic surgeon and now pathology came back with amazing news that it was entirely benign and my diagnosis confirmed - benign intramuscular myxoma. It is a rare one but I am blessed that it was benign.

I am also not worried about ALS or MND anymore because whilst all my symptoms remain (and it is still a mistery and a misery that affects me every day) my muscle control remain and I havent lost any function in over a year, so all neurologists were absolutely spot on.

I hope I will get to find what's causing all of my symptoms from my OP as they all unchanged and will report back but just wanted for now to say thanks for everyone who supported me through this time. It truly made so much difference to me and I would not be able to get through this without you. Thank you, kind strangers and I wish so much happiness and health to each and every one of you xx

I have been reading your threads since you first started them, very glad to hear your good news and now you know that the lump and weird symptoms are not cancer or MND I bet they will lessen over time, our bodies do strange things sometimes for no apparent reason, let’s hope this is the beginning of your recovery.

Hello @Wobblyheart ! Good to hear from you, I somehow missed your October update. Very glad that the mystery of the lump has been solved and that it's benign.

I also hope your son's likely hypermobility will lessen as he grows up, I believe that can happen. You have both been through so much! I wish your family a blessed Christmas with improved health in your futures. 🙂

Thank you @CrunchyCarrot , I also wish you a wonderful Christmas and much health and joy. You have been so so kind to me, I always smile when I see your username in my notifications :)

🤗

Did this ever resolve, @Wobblyheart ?

Hi! Not quite! In a gist, I have no diagnosis apart from hypermolity and afenomyosis. I am feeling somewhat better and stronger than 2 years ago but still about 60% of what I used to be. I suspect I might have ME / CSF after all but haven't been bothered to get referral to that clinic as if is it is only mild. The other theory is that I lost a lot of muscle during my pregnancy and got quite deconditioned (noted by a spine surgeon). Add the most debilitating stress and anxiety, poor nutrition, sleep, demands of full time work and a little toddler and probably this is the fatigue I am getting. I have adapted working out but it is physically very challenging. 3 mins on exercise bike floor me. But I am okay taking walks now :) hope you are okay xx

Thank you for the update. I’m so, so sorry that you still don’t have an answer and that you’re still struggling so much. That is really tough, especially with a toddler.

Thank you. I should have added I am able to do pretty much all activities, work, household, etc. It is just i cant get rid of heavy feeling of exhaustion and breathlessness and muscle fatigue. Those are always there but I can't complain. I am functioning. I am here. I am grateful for this.

Did you ever have your morning cortisol levels tested?

No, I haven't. And actually this is one of my theories too. I used to have low cortisol (as in below normal references but slightly) historically. In the past couple of years it has been consistently slightly higher above normal but not enough for docs to worry. But yes I think you might be on to something eith cortisol. I have many other symptoms of high cortisol too.

Interesting. I wonder if it could be cyclical cushings.

Had to Google it! I though I now know ever disease under the sun but haven't heard of this before. I mean I am very prone to cysts and lumps and bumps but I have had extensive imaging in the last 2 years and no tumours were detected in those areas that could cause cyclical cushions. I think it is probably from the absolutely debilitating anxiety that I have been experiencing, stress and lack of sleep.