Kastii

@Kastii I know your posts are ok and I hope you have recovered by now, if you are happy to share how you are doing it would give me hope

Hello Kastii , I hope you are doing well, I was wondering how your situation is and whether you have found any improvement. I am still in the same boat as before, with periods where i feel a lot worse than other times. Let me know how you're feeling these days. Cheers, Matt

Thanks for your reply.
I am like you, in the morning as rusty, stiff, and then it's better later in the day.
Do you have results on your respiratory problems?
FVC, FEV1, PEAK FLOW, MIP, MEP, SNIP TEST?
have you seen an ENT for your swallowing problems?

Hi Remy, I am sorry you are going through this and getting worse. Its not nice for anyone. I did a total of 5 EMGs. The first 4 were after 11-16 month after symptoms started. They showed some fasciculations but nothing more. The last EMG that I took 24 months after symptoms started showed fibrillations and positive sharp waves (active denervation). I am not registered on patientslikeme. I think the only thing to 100% confirm/rule out ALS is time. If you continue to progress steadily you should redo the EMG. Normal EMG is a very a good sign but like in my case it sometimes takes some time before abnormalities show up. I also found that the last EMG was very thorough so perhaps tell the person doing the EMG that you are concerned and that they should be thorough and take their time. But if you took them at ALS specialist centres that is reassuring for you.

Bonjour! I am actually in france this week, what a small world. I have no idea what is going on with me. I am really nervous about all of this because it is in decline. I honestly don't know what to recommend to you as it is such a difficult situation to deal with. My life is in limbo, never knowing which way to push. On one hand, I am doing "ok" at work with opportunities, yet on the other, I am just a nice façade with so many issues inside that I am just waiting for the moment for something to give. Stay strong!

Hi Remy nice to hear from you. Yes I have been off work for 5 months now, it has completely destroyed my life. Praying it is not ALS. Searching for a proper diagnosis and very much hope for possibility of treatment and recovery.
What is your schedule of investigation?

Thank you for the message.

Hello,

I have received your message and it sounds wonderful since your condition seems stable. Has your doctor consider PMA or other LMN dominated decease?

Best regards,

Hi Remy
How was your visit to the ALS clinic?

Hi,

Wonder if you have checked for cidp?

Best regards,

This shaking is something with comunication between nerves and muscles. Like some chemical is not prodused.
I hope that this is CIDP or some kind of neuropathy or LUpus or some autoimune because afther plasmapheresis I was ok for 10 days - no pains, no twitching, full with energy. ALso corticosteroids are benefit for my condition...
I have also trouble breathing and swallowing - like the nerves are damaged...
Really don`t know...
Our best ALS specialist told me I dont have ALS - with all symptoms and tongue atrophy.......
Maybe CMT ....
DO you have atrophy in muscles??? I have in hands bilaterally and wrists but no lose of fine skills...
I wil make next week
ALl doctor tell me this is

In my case there are very strange and atypical but I don`t know what to do.
In my country we don`t have good neurologist..
I count My emgs - I have 17 for 2 years...
NONE have fibrilations and PSW but in all I have denervation which is chronic.
ALso prolenged F reflex ( which i read is symptomatic for als and Cidp)
also a lot of fasciculation and pollyphasic mups.
I have burning , symptoms are bilateral and almost equal, also jerks, and pain lika stabbing with knife. Also heel bilateral and finger joint pain, blurry vision, and full use of my body. This things point away from als but hypperreflexes ( very very hyper) tongue atrophy and progressive symptoms are for als...

Hi, and greetings from BUlgaria...
I really dont know what to say - this thing is overwhelming me - I can still do my daily task, but i am getting weaker and weaker....
This starts 4 years ago and really bothers me 2 years...
Here I met a really nice people and a bunch of moorons like some admins that are very ofencive.....
They repeat things but we are different, arent we???

Things continue to evolve from weeks to weeks.
I think that when the patients are young, that the start is diffuse and atypical, with normal EMG even the specialists are lost.
Many things that some members of the forum say about muscle weakness and emg are completely false.
I know a lot of PALS in France and every story is different.
A normal EMG does not exclude ALS if the symptoms continue to progress over time, if things get worse.
An EMG shows little or no abnormality if the upper motor neuron is affected.
Symptoms at the onset of the disease are subtle and can be a small gene for several months.
Cases of brutal paralysis of a limb exist, but they are rare.
Muscle weakness is PROGRESSIVE and can take several months before being objectivable during a clinical examination.
On the other hand it should be known that generally when the time between the onset of symptoms and the diagnosis is long and several EMGs are normal at the start, the evolution is slower.

Hello,
The ALSFRS-R test is used to measure functional decline in the disease.
I have 41 and your problems are very similar to mine.
I have no diagnosis, lessymtomas have started for 18 months.
Here's how it is today:
- fasciculations everywhere (same language but very rarely)
- severe fatigue
- Short breath, dyspnea (to the effort and in I speak a lot)
- my legs tired quickly
- my arms are heavy and I have trouble using them normally (it tires, it burns)
- interosseous muscles of the hands that grow
- back and neck that fatigue quickly
- difficulty swallowing (like a gene)
- my voice is tired and a little hoarse
- slight hyperreflexia at the level of the knees

And yet I have already done 2 emg (July 2016 and February 2017): clean
I was hospitalized in February 2017 2 days in an ALS center:
- EMG: normal
- nocturnal oximetry: normal
- FVC: 110%
- MIP (maximum inspiratory pressure): 120%
- MEP (maximum expiratory pressure): 130%
- blood gases: normal
- MRI brain + spinal cord: normal