34 female feeling worried

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Nirmccarragher

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Feb 15, 2024
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Learn about ALS
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Country
AU
State
AU
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Tas
Hi,

I have read the (read before post) I have put off posting for over 3 months. I’m sorry to anyone affected.

I’m a 34 year old female with two children.

In august I noticed muscle stiffness/ soreness and fatigue going for a walk on the beach every day activity was so much harder. I’d already given up running 3 months prior. My ankles and wrist were sore and stiff and I had jelly legs. In November I developed laryngitis ( which went after 3 weeks) but my voice never returned and I developed swallowing issues. I have had mri on brain and all blood work perfect. I had an Emg on lower legs ( no upper tested) which was normal the only thing noted was brisk reflexes ( I feel like my body has hypersensitive nerves all the time my son leans on my leg my knee jumps I feel every bump in the car is like vibrating through like my muscle and nerves are hypersensitive.

In the first week on January I developed all over twitching + jerking when relaxed ( my including in my tounge and jaw. Fast forward until now I still have horse voice, that’s weak, I find it hard to swallow I’m weak when speaking I get twitching in lip if I’ve been speaking to much, I have cramping in my thoat on and off all day and still have stiff sore wrist and ankles I do get some burning feeling often and my head constantly gets heavy and neck gets sore to the point I want to lie down. I have also resigned from my job because I didn’t think it was fair on my employment because I couldn’t work to my full capacity I’ve Been so worried with my symptoms and dealing with them it has affected my daily life.

Should I be requesting a emg of my upper body? I have managed to get a ent specialist appointment. Any thoughts would be appreciated.
 
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I would let the ENT do an eval and make recommendations. Off the top, I'm not seeing an indication for an upper body EMG since you had lower body issues with a normal EMG.

The fatigue level you're talking about seems more systemic than neurologic to me. I would consider a second internal medicine workup.
 
Thanks so much for your reply.

The swallowing issues and feeling in throat has just been terrible it’s been months and never changes day in day out. The last two days my whole right arm is just numb and sore because it’s so stiff my wris, I shake trying to hold my hand/finger straight because it’s so still and I’m weaker ( I feel like I have a dead arm and and extremely stiff wrist) this is really concerning with my issue in throat and brisk reflex in knees.
 
Things like numbness would point to something else. Make sure to read here: Read Before Posting as it addresses many of the questions that bring people here. It really sounds like you need to see your doctor again if this has caused you to resign from your job. While it doesn't sound like MND/ALS, I am sure you would love your questions answered- and your doctor is the person who can help.
 
If I may ask, being you resigned from your job, do you have a source
of income or insurance to pursue future medical appointments and
possible procedures... maybe requesting a second EMG ?
 
Hi,

Yes my husband works fulltime, we do live in Australia so my appointments are nearly all covered.

I have managed to get a swallow test in may. I can still swallow foods and liquids not chocking it’s the back of my throat just feel odd all day long I just have think about swallowing and every time I eat anything I burp ( I think because it’s slightly harder I’m taking in more air) but my main new symptom is my breathing is so shallow and I feel like its not going into my chest I have to think to take my breathes, can this be a symptom of ALS. Still concerned about upper MND. My doctor told me they won’t do another emg because I just had one in December on my lower right leg.
 
Can someone please add some thoughts.

I’m trying to be so patient and not really sure where to go and what to do why I wait for a follow up.

August - stiff sore muscle trouble walking up hills ( sandbag legs and fatigue) I do get burning pain and if I have to exceed myself and sit in a squad postion or try and run and shake and feel like my legs will give way.

November chronic laryngitis ( voice has never been the Same since - constant horse and slower to swallow liquids)

First week of January full body twitches and jerks especially at night or at rest ( the jerks make my limb move)

Hypersensitive feeling and jumpy.

Itchiness on my arms ( both arms have terrible cuts and scars because I can’t stop scratching ( I take setreline and carbamazepine, I have trigeminal neuralgia (which is also rare for a 34 year old - they found a blood vessel on my mri) so not sure if it’s side affects.

I have Brisk relaxes noted by there symmetrical all over. December doctor notes no spreading and no clinical weakness just that I feel weaker.

Last few weeks sore right hand ( fatigued easy even holding a remote or a cup) I do get burning in palm. I’m aware my arms feels funny but I push through and try and do my normal activities- which I can ( I just switch hands if fatigued is too much)

And my main new symptom which makes me uncomfortable and really scared is my breathing ( it’s really shallow and uncomfortable like im not getting much in, nights are worse and when i go for walks with my heavy legs my chest is heavy and breathing is harder and I’m fatigued. My mum noticed after walking she could hear me wheezing I also have a horse/ raspy voice some days are worse and some days I sound normal.

Please can anyone give their thoughts
 
It still doesn’t sound like ALS. If you are having wheezing you need to see your gp but it isn’t an indication of ALS
 
Hi,

Thanks for your reply. The wheezing was only the 1 time it’s more I feel weak that makes me feel like I have shortness of breath and tightness around chest the moment I start walking or talking I struggle to breathe then I get throat cramps and tightness. I’ve decided to get a lung function test.
 
A pulmonary function test is a good idea. I would certainly make sure someone has seen you during the spasms first, though, since these could interfere with the PFTs.

What happened with the ENT?
 
Hi,

Sorry for the delay in post ( it only allows me so many)

ENT just requested a swallow test not until May and the only thing he said was I though the neurologist would have diagnosed you before seeing me?! ( my swallowing muscle feel weak just having to swallow my saliva and if I have anything like chocolate or grains they get stuck in my throat) then there is the burping all the time because I’m breathing in more air.

This last fortnight my right arm has changes ( it feels limp, like a dead arm ( hand movement is affect and my fingers often drop) if I try and lift my arms it’s like there is a 5 kilo weight on them.

I went to my physio this morning and she did a lower body strength test and my numbers were amazing ( so really strong on lower legs, but I get I instant fatigue and shakiness and feeling off balance after) we then spoke about my right arm and when viewing she pick up me thenar on right hand was flat were is my left hand ( none dominant was large)

I feel I’m completely in panic mode a 34 year old mum with two young beautiful kids ( I cry every night looking at them in bed)… I feel this started with stiff legs, now it’s affecting every muscle in my body with weakness and spasms and swallowing issue, I honestly can’t get UMN out of my head…I’ve always been so good with my gut feeling and I can’t see anything else.. all the stress the last 2 years I feel like I put myself in this position. I’m so sorry to rant I’m just exhausted.
 
It really doesn't sound like MND, whether upper motor neuron-dominant or not. I would look into PFTs, a sleep study, while ruling out systemic illness with your GP. As well, the two drugs you are taking for TN can both cause a constellation of symptoms, as can TN itself. A consult with a clinical pharmacist might be helpful.
 
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Hi,

Just an update my swallow test came back normal ( which is great) even though I don’t feel ok my mouth/throat ( the doctor said the it doesn’t show things like silent reflux etc) so maybe have to follow up and keep digging.

My hand spasms are still constant at night I’m so stiff and weak on my right hand. If I try and hold anything with my thumb and index finger my thumb shakes uncontrollably.
my spasms/ jerks over my body feels like someone is kicking me from the inside they are so stong.

Because I’m just sitting around waiting a booked another chat over video call with a neurologist ( but honestly don’t know what this is going to do, it’s just starting my story from scratch again with another doctor)
 
I will stand by my original suggestions, including consideration of retitrating the SSRI and anti-seizure med, PFTs, a sleep study. As you say, no point in starting over. These two meds also interact with each other and with alcohol, if applicable.
 
Thanks so much for your kind reply.

I decided to stop taking both drugs over a fortnight ago ( just so I wasn’t masking symptoms) my right arm and hand is the biggest issue it’s just weak ( it feels like I have a dead arm) so I’m using my non dominant hand to do most things..even a cup feels like it ways 20 kilos. Muscle twitching still all over ( not as bad at night as when it first appeared) I’ve had left eye twitching for the last 3 days non stop ( that’s new for me) and leg heaviness and cramping all over is still there, even have tounge cramps when reading to my children and the noise of kids, doors and even them jumping on me I can’t stand due to the hypersensitivity and I startle easy.

I’m just patiently waiting for the hospital to call for my neurologist appointment but because it’s govemnet funded you are on a long wait list so they never give you a date just a phone call when you hit the top of the waitlist. If I feel like I’m getting worse or if something pops up I have the opportunity to go to emergency but I don’t want to add pressure when there are life threatening medical emergencies happening.
 
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