Understanding muscle weakness

[Wobblyheart]

Hello all,

I am awaiting a consultation with neurologist in three weeks time but I am hoping to understand something better in view of concerning things that has happened to me in the last couple of years.

I am 36 year old female and very recently (5 months ago) gave birth to a long awaited baby after three rounds of ivf. And now I am terrified my lovely son might have to grow up without a mum, and my heart is just breaking.

It all started early 2020 when I noticed my legs would shake a bit when I go down the stairs and started to tire more easily . Then, early 2021 I realised I was holding my pelvis different when using the sink but thought nothing of it. Towards to the end of my pregnancy in august 2022 my arms started to move in a funny way. Almost like they were too light and I am having a bit of trouble controlling them.

Fast forward to now:

Finding it difficult to stand - a bit wobbly and hard to hold myself up straight
Breathlessness (chest x ray clear)
Wobbly pelvis / knees
Dexterity in my left hand worsened , finding it slightly difficult to type
Lost 15% of my weight
Muscles got much worse thinner all over my body
Little occasional twitches
Occasionally trip very lightly and rarely
Extreme fatigue
Muscle dents in left forearm and left thigh

Had spine and brain mri, all clear,
Bloods for easy stuff like vitamins and thyroid is also clear so I am really worried.

I read the stickies and what I am most concerned about is how I seem to compensate with my glutes when I am standing, some of my muscle seem to work very hard to hold myself up, leading to a change of posture. Does this sound like some of my muscles stopped having the signal from the brain and I am using other ones to compensate?

All of my muscles seem to be affected now but worse on the left side.

I am of course will be consulting the neurologist but I find it so hard physically and mentally being in this scary limbo and it is making it extremely hard looking after my baby. I would appreciate any thoughts, words of support or encouragement.

Thank you for your time.

 

[KimT]

I'm not sure how much you weighed before but a 15% weight loss could cause muscles to thin out especially if you lost the weight quickly.

It's good you are being medically followed by a doctor and your neuro can rule out a bunch of issues related to your symptoms.

Having a pregnancy does put a strain on your body and you probably are exhausted.

If you have a follow up with your GP before the neuro appointment, he/she should be able to test your strength.

I'm glad you're getting the care you need. Try not to worry about it and, as hard as it is, try to stay away from Google. Focus on your child and leave the rest up to the doctors.

 

[Clearwater AL]

You are terrified your lovely son might have to grow up without Mom
and your heart is just broken. *It’s little too soon for that concern.


We have seen this in so many threads before yours where a Mom just
had a little one.

It’s called… Postpartum Anxiety or Normal New Mom Fears.
Postpartum Anxiety can create, amplify and become a sad cycle that
is difficult to climb out of.

Ok, that maybe part of your anxiety. Three weeks from now I hope
your fear of ALS will be dismissed and something curable and or
treatable will be presented. Most of all... curable so you can go on
in life with your new son.

Try hard to love and enjoy your new little one for the next three weeks..
He'll feel it and enjoy it too.

 

[lgelb]

Niggles in 2020-21 are not necessarily related to the now. Our minds are quick to form connections. But even if they are related, I don't see ALS in this picture.

Very frequently, and not always seen in blood levels, pregnancy and nursing can torque B vitamin, iron, and electrolyte levels besides shorting you on sleep, esp. restful sleep.

If you feel you are losing core strength (the factor often behind wobbly pelvis/knees), what happens when you exercise your core with simple moves like standing kicks? Standing squats? Etc..? If you can build strength/flexibility, that argues against ALS, obviously.

If anything, this sounds like a systemic or muscle issue, not a nerve issue. Presuming the neuro visit is reassuring, I would ask about a PT referral.

 

[Wobblyheart]

Thank you so much for your replies. I am of course anxious but it is chicken and egg situation, my physical health interferes with my daily life so much that it causes anxiety rather than a different way around. I have been anxious and stressed in my life before but it never causes coordination and walking problems.

Igelb - thank you for your helpful response. My vitamins are all up to scratch and blood work and mri spine/ hear clean. That’s what is making me even more worried.

It really difficult to stand - my thigh muscles seem always very stiff and of course I have the twitches too, which started early March. The left hand and forearm seem to be getting weaker and I am finding it more difficult to grasp / grip things with it. As to exercises, I have tried some light exercise at home but lifting my legs and arms is incredibly difficult - it’s like there are weights attached to them and they don’t lift easily, like lifting them through cement. Just standing up straight for any amount of time is difficult.

Could I also ask whether you might know how common it is for ALS to start with overall feeling of exhaustion, muscle fatigue , breathlessness and weight loss, alongside of muscle failure?

I am trying to focus on my baby but it is so hard as any activity / movement I make reminds me that there is something very wrong with my body.

 

[Bestfriends14]

Whatever is going on with you, it's not ALS. ALS doest manifest in the way that yoir symptoms are. Again, continue to work with your docs. Good news is- you don't need to be on anALS forum.

Take care and good luck

 

[Wobblyheart]

Thank you everyone, I appreciate all the replies and suggestions. I hope it is okay to come back here once I have seen the neurologist and/or once I have the diagnosis.

 

[Nikki J]

We encourage people to return and post their eventual diagnosis whatever it may be. Seeing the outcome is helpful to everyone

 

[Wobblyheart]

@lgelb Hi Laurie, i am sorry I am bothering you. Your reply to my thread was so balanced and it seems like you have a really good knowledge and seem to have a good sense of when things don’t look like ALS. Several days ago I had a considerable trouble manipulating a razor with my left hand when shaving - something I never had problems or I did not have to spare any thought about it before. I also saw on ALS org profile that muscle wasting and weight loss as well as fatigue are all symptoms too. Would you say with my clinical picture that MND is in differential - odd movements 8 months ago, then profound fatigue, all muscles tiring easily, breathlessness.

A month ago - Fasciculatios started, mainly in my left foot and left hand but also within the upper belly / chest and left leg. I can feel and see them. And now I have trouble pinching between my thumb and index finger. I still can function, things are not impossible, I am able to complete all tasks, it’s just that some of them becoming increasingly difficult . All of my symptoms never wane. They come and stay with me. I don’t have good days. Sorry to trouble you. Thank you for sparing a thought and time for a scared new mum and sorry to post here before I have seen a doctor. I am not impressed with myself but have little support at home and desperate to talk to someone about it, especially seeing a couple of accounts of young females that have their als presented in the same way.

 

[lgelb]

Stop reading profiles. That's like voting based on a flyer under your windshield.

Your razor is a problem only if you can't shave. Our minds, jumpiness, etc. (and did you get checked for/try RDA-level supplementation for common post-pregnancy deficiencies as I suggested?) can easily make an extended hand/fingers wobble.

I don't understand why you're not being followed by your GP in advance of the neuro appointment. That would be my next call.

No, the pattern you describe does still not sound like ALS or anything like it. Stay away from the net and get more sleep, and contact your PCP, before you conclude anything dire.

 

[Wobblyheart]

thank you for your reply Laurie. Yes all relevant vitamins, thyroid and extensive bloods were checked by gp already, all normal. I also take enhanced breastfeeding vitamins as I am still breastfeeding 50/50 with formula. I also had addissons and pernicious anemia and RA ruled out.

As to the razor, I could shave but could not rotate it in my hand like I used to before - so a problem with one particular action between my index and thumb fingers.

I am in the UK and access to GPs is currently difficult with long waiting times but I will see if I can get an on call doctor to speak to me. There is only one private gp in the county where I live and they are my normal gp so I am not allowed to see them privately (considered conflict of interest). Travelling currently is very difficult due to a 6 months old and my general malaise.

To be honest, I haven’t really heard about MND much before (other than Stephen Hawking) or it wasn’t even on my mind. I had a suspicious lump and for 4 months were waiting for diagnosis. I was told possible malignancy so all other systemic symptoms made sense. Now proven to be a benign lump hence the question why am I still declining. So i guess I just got desperate and wanting answers.

I appreciate your time and know that only doctors can diagnose me. I guess I am just desperately wanting to hear I am okay as I feel so wrong. My apologies for taking up your time, please forgive this act of desperation.

 

[KimT]

I'm sorry you still fear MND. Is this your first baby? If it is, many of your symptoms might be caused by your pregnancy and taking care of an infant.

I hope you answers and also hope you can see a GP. I know about the wait in the UK. Sometimes, depending on the doctor, there is a long wait here, too.

So glad your lump was benign. Try not to worry. I know, easier said than done.

 

[Wobblyheart]

Unfortunately, it’s not anxiety or new mom fatigue. Neurologist confirmed muscle wasting and leaning towards progressive muscle disease, however he can’t exclude MND either. EMG/NSC next. I feel so scared. My hopes were shattered.

 

[KimT]

I'm so sorry. You're not alone. When is your EMG?

 

[Wobblyheart]

Thank you Kim .

I think it should be a couple of weeks, I will be contacted with the date.