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 ❤️

If it happens to be ALS you may want to look at the keto diet. You can find information about how this may help on ALS Today and also on the website of the Charlie Foundation. There are also scientific publications about the ketogenic diet and ALS.
Wishing you all the best.

I would check to have them rule out Lyme disease, as it can have many of the symptoms you describe

https://re-origin.com/conditions/chronic-lyme-disease/?gclid=CjwKCAjwue6hBhBVEiwA9YTx8OwabNogPRYigKBf5ORp4ng4dBULjb8_kbKp2LiGt8bTuccsaAznfxoC6dgQAvD_BwE

healing wishes, OP. hope you get some answers soon, so you can begin dealing with it and alleviating the symptoms. 💐

I am worried that you are being encouraged to self diagnose with some very serious conditions (and indeed posted this in Life Limiting Illnesses) when your test results are reassuring. You now strongly believe that you have MND, which is not a diagnosis that should be made using Google and feedback from online strangers.

You have a very young baby, which is stressful and exhausting. You have also had other stress in your life, and your husband (who knows you well) believes that this is linked to your symptoms. You may well be short of iron, short of sleep, low on B12. I remember I spent too much time googling and diagnosing DS with all kinds of conditions on the basis of symptoms which were in reality nothing meaningful.

I am hopeful that you will get further reassuring feedback on Wednesday and, if so, consider whether health anxiety may be causing some of your symptoms.

God love you, sending so much love. Couldn’t just read and run.

i hope you get some answer soon and hopefully some help to at least make life a little easier x

I don't think anyone is suggesting she should self diagnose. but sometimes in reading about symptoms of conditions people realise that a little "unrelated niggle" actually could be the clue they need to mention.to the doctor (for me -my ptosis)

And all the bollocks about being tired with young children is the kind of dismissal I got from GPs for 5 years while battling with undiagnosed myasthenia (and if they had just looked at my face, instead of the screen showing "normal" test results, they would have seen my visible ptosis)

I am glad you are seeing the neurologist soon Op.

@SweetSakura thank you for your post 💗

@TheYearOfSmallThings i cannot express how much I want for what you are saying to be the truth. I will go even further - I would rather be gladly found to be psychotic / mental patient / what not rather than face a terminal illness.

the only reason I am trying to self diagnose is it is crippling hard to observe your body failing for over 6 months now. I spent 4 of those being told it might be cancer (it wasn’t) and new mom fatigue / anxiety - yes it contributes but would not make my finder stop working.

also I am now waiting 4 weeks for autoimmune tests to come back, gp promised to call me back on Thursday, no call. Was told I am still on the list on Friday, no call. If I wasn’t made to wait and be reminded everyday with every breath that my rib cage doesn’t rise as it did, that standing makes my muscles hurt, I would not be turning to internet for answers. I didn’t really know about MND until last months or so.

I am grateful however for all the kind words and suggestions that I have received here as they supported me so much.

I don't know if this is helpful to know but drs get very little training in vitamins and minerals despite how vital they are. They will tell you your levels are fine just because they are within the very wide parameters set by the lab they use. Your ferritin at 40 isn't very low but it is low enough to be causing some symptoms. Regarding your B12, if you are taking any B12 (such as a multi vitamin) then the results will be totally inaccurate, you need to avoid taking any B12 for 4 months before being tested. The best way to find out if it is low B12 causing some of your issues is to have B12 injections (you can't overdose as any not needed leaves your system). Unfortunately it is very hard to get a Dr to prescribe injections if your B12 results have come back within range, I have had that battle and failed but you can get them privately.

I'm sorry I have no words of wisdom but just wanted to let you know that I hope you get the answers and help soon

Certain vitamins can skew blood test results- for example Biotin affects thyroid results. You really need clean bloodwork done. Hope it can be pinned down to something easily treated.

Good luck for tomorrow @Wobblyheart

Will be thinking of you and keeping everything crossed 💐 x

Thinking of you for tomorrow @Wobblyheart

Also sending my very best wishes @Wobblyheart 💐

Good luck. There is always hope. I saw the neurologist and nothing new came from it. I had two nerve conduction studies and was discharged. Thought it was MS but that was ruled out. I have a follow up for March bloods in October! I'm going to try to get as fit as I can while I wait. I hope you get good news tomorrow.

Thinning of you today

Thinking* 🙄

Has the possibility of MS been explored? Please ask for help with care for your baby... you need to ensure you are both safe

It sounds really scary for you, especially with a baby to worry about too. I hope you get a diagnosis soon. How are your symptoms now?

Hi everyone, thank you for your thoughts. My symptoms are all the same plus muscle twitches and worsened weakness in left hand. Saw neurologist today. Definitely something is amiss. He is leaning towards muscular atrophy / dystrophy. Will be having EMG/NCS done.

I'm sorry that it sounds like there is something going on, but on the other hand I am sure there is relief there too to be taken seriously and know they are investigating.

I have had an EMG and it's quite an odd experience! Not really painful, just very bizarre.

Have you ruled out premature ovarian failure? Basically starting perimenopause before 40. You have so many symtoms of peri.

Do you have long to wait for them?

Yes EMG was weird, and to be honest if they need to whack it up, unpleasant. The nurse I had doing it turned it up full as as it was not giving good results. It was like being shot but with zero after pain and only minor pain. The feeling of force was like being punched ( but not with that pain, just a mild zapping pain). I was told to go back for a needle emg. The Dr said "I'm not going to lie, this hurts, we did it to each other as students". I presume however he had never given birth so his idea of pain and mine might be quite different. Just to prepair you OP. If it's a standard test = fine. Mid = weird. Top level = not painfully but not pleasant. Good thing, that's nothing as soon as it stops. I wouldn't rush back but preferable to a filling.

Yes I think that's a good summary of the EMG experience @IncessantNameChanger

Did they say how long you would have to wait for the tests?