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Elizabethm12

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Hello All. I’ve thought long and hard before posting this as I’m very much aware of the daily struggles a lot of you here face. I am however finding myself on this site more and more frequently and feel untill I have my questions answered from people with real life experiences - only then will I rest.

Basic background: 21 year old female financial advisor from the UK. Gave birth to my first baby 9 weeks ago. Usually in perfect health, fit and active.

I found around 4 weeks post partum I began with odd sensations around my face mostly resting around my chin and side of my lips. Also my cheeks feel the same sensation throughout the day. It feels almost as if I’ve been numbed by a dentist and it’s starting to wear of? Bizzare I know but no other way to describe really. As well as this I began with bodywide twitching (most likely bfs as it’s widespread) and an usual overwhelming fatigue in all of my muscles followed by a ‘perceived weakness’ in my right hand. Found my fingers were stiff when trying to tie my shoelaces and clean my daughters bottles.

Went to GP and had full exstensive blood work complete - all normal except folate on lower side as well as iron (birth to blame for this) my levels have now come back up to normal and symptoms still remain. I’m taking specialised multivitamins in an attempt to regulate my salts etc after the birth incase this can attribute to my symptoms.

What is concerning me most is my throat and tongue. The odd sensation I have around my face feels like it is also around the bottom of my throat almost where the voice box is. My throat twitches regularly and I feel my tongue at rest is also twitchy. I’ve met with a neurologist who has completed head MRI, CT head and auto immune bloods all come back normal - thankfully. I have also had 2 EMG’s and NCS completed. Very thorough, all limbs on both sides as well as tongue, under chin and inside tongue and at the side of my neck. All of which come back normal - very reassuring! I am now however experiencing subtle changes to my speech. It is not noticeable to my closest friends and family. Swallowing feels hard but is not bothering and liquids go down with no problems. When I am speaking I notice a squeaking from my nose (probably unrelated) and I feel like speaking is an effort. I’ve mentioned all of this to my neuro and he feels it’s probably a symptom of anxiety even though I feel sure it isn’t. I also cannot stop yawning, some would say this is excessive. I find myself yawning close to 20 times in half an hour with no relief. I notice I also keep getting the urge to cry my eyes out at the smallest thing. I can control this thougj and often can hold back tears. Could this be the start of emotional lability? I’ve read a few posts whereby subtle mood changes along with yawning have been very early symptoms in hindsight. I have however had the advantage of having diagnostic testing (emg etc) very early into my symptoms. What are your thoughts on this? Is there ever a ‘too early’ to rule out bulbar onset als?

If there was something sinister (even in its earliest stages) would this show up on an EMG?

I feel my age puts the odds on my side but when the small chance is still there I suppose us anxious folk cling onto it like a leach. I am trying my hardest to be positive and focus on my gorgeous little baby but my symptoms around my throat, tongue and face are bothering me and I can’t shake it.

I’m sorry if I have offended or annoyed anybody with my long winded post. I’m not looking for a diagnosis here - Although the neuros are the experts, the real life people dealing first hand with this disease in my eyes are the ones with the most useful information. Thank you for taking the time to read my post.

Morgan
 
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KarenNWendyn

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You saw a neurologist and had a clean EMG. This means ALS was ruled out. And yes, an EMG can pick up sinister changes early.

You might want an evaluation by an ENT.
 

Elizabethm12

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Hi Karen. Thanks so much for your reply it’s really appreciated.

In regards to my ‘emotional liability’ and excessive yawning, does this sound like a cause for concern? Is there even a early sign of EL or does it just appear one day?

Thanks for your advice again.

X
 

lgelb

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Hi Morgan,

EL and yawning could both speak to lack of sleep, as could stiffness and numbness. That your intimates are not hearing the changes in your speech that you do may reflect the "subtle" (or maybe not so much) mood changes of which you speak. And not all nutritional deficiencies show up in blood work. I would stay in touch with your PCP while reconsidering and possibly tinkering with your diet, possible environmental toxins, exercise, sleep and stress. I presume your PCP ruled out postpartum depression?

Second the suggestion for an ENT/allergist. You might ask about a sleep study to rule out apnea.

Best,
Laurie
 

Elizabethm12

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Hi Laurie

Many thanks for your informative reply. This makes sense. My lifestyle has definitely been affected and I do believe an element of this is due to hormones going wild.

As I say, I don’t know wether it seems like EL as I’m generally otherwise happy but sometimes can find myself wanting to cry over little things. I’ve worked out the excessive yawning happens around when I’m most tired (duh) and the episodes start upon waking or before I go to sleep... I’ll go back to the drawing board with this with my GP.

Given your own personal experiences and the stories you have read on this site, do you feel this does not me t the criteria for an early onset (bulbar) case?

Thanks so much once again for your consideration into my post.

Morgan
 

lgelb

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Morgan,

No, your description in no way accords with the experiences of our members with bulbar-onset ALS.
 

Elizabethm12

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Update - needing advice

Hi all.

Many thanks to whoever stumbles across my post and gives the time to respond. I posted here a few weeks back regarding my symptoms I developed shortly after the birth of my first daughter.

My diagnosis was BFS induced by anxiety, a little stress and lack of sleep/poor diet. I have tinkered with my diet (as advised by Laurie from this forum - thanks Laurie!) and I’m happy to report my symptoms seemed to ease overall or at least get to a level at which I felt at ease with them, enough to not bother me.

However, I was awoken early this morning by a violent large deep twitch around my knee, lower thigh? Very persistent and has not stopped all day. After only having very mild, subtle bodywide fasis to a localised, one muscle strong twitch it’s safe to say I’m rather frightened.

I must add - I have had an EMG, NCS, MRI Head aswell as full blood work all of which have come back normal - thankfully. I had these investigations during the very start of my symptoms (mild twitches all over, perceived weakness, weight loss, parastheisas) all of which seem to have calmed down. Could this very strong muscle twitch be of concern? It looks like a very obvious lightening strike and was clearly visible through my pants.

Does this sound like anything of concern to anybody? Should I be requesting a second EMG? My EMG only found fasiculations of the left side (same side as this new twitch) but nothing abnormal. Is there anyway my ENG 4 weeks ago could have missed this if it’s anything sinister?
I’m also having really sore and aching calves and toes. Not cramps, just sore aches that are only relived with massaging deep and paracetamol.

I sound like a rambling fool now. I’m feeling rather wound up as I’ve been so happy and positive the past few weeks and finally feeling back to somewhat normal. Today I feel completely deflated and back to square one with my worries. The positivity and support from this forum however really is uplifting and inspiring and I am grateful for any replies.

Many thanks again!

Morgan
 

Nikki J

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Hot spots of heavy twitching are common with bfs so given you have that diagnosis after a workup and a normal EMG I would say no worries
 

Elizabethm12

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Hot spots of heavy twitching are common with bfs so given you have that diagnosis after a workup and a normal EMG I would say no worries
Thank you very much for your reply Nikki.

I had the initial EMG a month ago when the twitching was body wide and very subtle - enough to feel it but nothing major rather just annoying. As it’s now settled in one large muscle do you think the EMG would have picked something up if this new twitch was of sinister nature?

Thanks again, really appreciate it.
 

Nikki J

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Yes. Remember twitching is common and without other findings not worrisome.

Btw please don’t quote it lengthens the threads and makes it more difficult for PALS to read
 
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Elizabethm12

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Does worsening aches of the lower limbs and extremities account for anything untowards coupled with twitching of those areas?

I also have no perceived or clinical weakness which is really reassuring but I’m forever wondering would fasis present first with mild aches. Would the EMG show abnormal at the very fest twitch? I’m forever reading that no 2 patients ever present with the same story so I appreciate it’s hard to catorgorize such a complex thing.
 

Vincent

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I don't know how many different ways we can tell you you aren't dying. 9 weeks postpartum you are still recovering from the incredible strain to your body known as pregnancy. No I am not calling you hysterical. I am telling you you are in a weakened state from growing another person, giving birth, and at 9 weeks sleep deprived. I have Never had a clean EMG. I have abnormal EMGs of both arms, both of which still work 7 years from original symptoms. Relax, enjoy your baby, and look forward to meeting their children!
Vincent
 
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