Terrified it’s ALS

[Sarah92]

Hiya I’m sarah, 28 and I need somewhere safe to talk about what I’m going through. My symptoms started about 8 weeks ago I came out of hospital for gallbladder issues and within a week I had a headache and felt off balance and then I felt a slight stiffness (best way I can describe it) in the back of my tongue, it would come and go but felt odd to speak like I normally would, after a few weeks the headache went away but the tongue feeling continued and now I feel my speech is effected my tongue feels like it doesn’t move a smoothly, my jaw gets stiff and pursing my lips feels odd. I’ve started having muscle twitches mainly left side but all over, in face and lips too and buzzing in my legs. I have pain in different parts of my body, I see a neurologist tomorrow, I’m just so scared especially as I have three children, my youngest being only almost 2, my anxiety is at an all time high, can anyone offer can support thanks

 

[Nikki J]

Your post was moved as you are not diagnosed. Please read this as you clearly did not Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms

 

[affected]

let us know after you have seen a neurologist, but I can tell you that it doesn't ring ALS bells.

 

[lgelb]

Nor for me. Hospital stays can be a great stress on your body apart from the issue at hand, like your gallbladder. Nutrition, hydration and sleep can all be hard to come by, IV sites can be painful, etc. and you may need to catch up to see where you really are.

Best,
Laurie

 

[Sarah92]

Thanks for replying, the neurologist is referring me for tests and mri. I already feel my symptoms worsening, my speech is definitely getting worse. Non of my family or friends believe me as they can’t see it, I’m struggling so much to come to terms with a possible diagnosis x

 

[affected]

Let your doctors do due process with you. Honestly, PALS find the opposite - people ask why do you sound drunk, why are you dropping things, why are you walking so strange. Things like that. And they are amazed that they just can't do things when they feel so normal.
So that is all good for what you report, as you are convincing yourself you have something terminal when it is not obvious to those around you.
Let us know the diagnostic outcome as you work with your doctors who are examining you and reading test results, as only they can really sort this out.

 

[Sarah92]

Thanks for the reply I really appreciate any help and support on here, it seems a very safe place to be. I’m very anxious waiting for my appointments, over the past few days I’ve had tongue twitches, when at rest also, my speech is getting more difficult and my legs and arms mainly left side tire very easily, I’m so petrified and the fact all these symptoms have developed quickly doesn’t give me much hope

 

[affected]

Please go back to the link here

Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms

We will try to answer reasonable questions. We are not here to argue with you. If you announce that you ”know” you have ALS when the doctors say otherwise, or you have not bothered to see a doctor, your thread will be closed. It is not our place to try to convince you you are wrong. Neither...

www.alsforums.com

We are helping the terminally ill, it isn't appropriate to ask us to hold your hand and soothe anxieties when you don't have symptoms of the disease our members are dying from. Do you realise some people here are typing with their eyes and breathing by machine?
Come back and tell us what the doctors diagnose, but until then ask your doctor for assistance with anxiety if you can't cope. You can receive help, but I'm so sorry we don't have the resources to do anything more. (the fact your 'symptoms' developed so quickly totally points away from ALS)

 

[Sarah92]

I totally understand and respect that, I mean no harm in coming here. I know you all are educated in this awful disease that’s why I came here to ask some questions. I’m waiting for tests so as you can imagine I’m extremely anxious. I have noticed some tongue atrophy and muscle wastage on my left lower leg, it feels harder to walk, also my speech is getting harder daily. Please I mean no harm I’m just so scared

 

[affected]

Please, take your valid fears and concerns to your doctor as you will drive yourself crazy by deciding what is atrophy and muscle wastage. You are not describing ALS but we cannot see you nor examine you so continuing with this is only fuelling your fears.

No more here, let us know the outcome for sure as it helps others that are highly anxious. We respectfully ask you do not badger back at senior members. You asked, we answered.

 

[Sarah92]

Hiya I just wanted to update you all on my situation. I’ve seen a neurologist who suspects mnd and is going to do some blood tests and an emg. My symptoms are progressing very quickly, my hands, feet and arms are extremely thin now and my swallowing has become very difficult, I am getting short of breath and very tired and lightheaded. The twitching has become more frequent and I have widespread pain all over my body, whenever I move my neck, wrists, arms, legs they click. I understand nobody here can diagnose me but I have no support and as I live away from family I’m worried time is not on my side. I need to move back home and apply for new schools for my children, I’m just very overwhelmed and scared, thanks for reading x

 

[Nikki J]

Sorry to hear. Before you make irrevocable changes though see what the tests and especially the emg show. Surely if your symptoms are as you state they are fast tracking the emg. I am familiar with the nhs delays but I know in cases like you describe things are done very quickly

 

[Sarah92]

I have an appointment for emg on the 24th of august, I just don’t know what to do in the meantime if things get worse as I don’t have any support where I am and I have young children x

 

[Bestfriends14]

How does the neuro suspect MND? As far as your posts to date, you've yet to have an MRI, yet to get blood work (you'll get the bloods on the 24th?), and you've had symptoms for only 10 weeks. What are his suspicions based on?

Please come back after the 24th to share the findings of your clean EMG. It helps others to know why your type of symptoms do not indicate ALS. As others have said, ALS does not progress at all in the manner that your issues are progressing. Not even a bit.

You're potentially going to make numerous rash decisions based on a disease you don't have, thus unending you and your family's life and putting them through a ton of stress. And for what? Please take a deep breath and think calmly. Come back after the 24th and please share results of your clean EMG.

Until then, take good care.

 

[Nikki J]

To be fair apparently a neurologist apparently said they suspect mnd. Was this a neuromuscular neurologist and was it a second opinion? There is a long way Sarah from suspects to actual diagnosis and even then 10 percent of initial diagnoses are wrong. The 24th is 2 weeks from tomorrow. If you must you can research and plan for the worst but really don’t do anything you will regret.