Very worried awaiting diagnosis

[Kayleigh]

Hi Shepster,

I can't answer your questions about the scientific stuff (science never was, and never will be, my 'thing'!), - but my gentle advice to you is to try focussing on the bigger picture.Try not to get stressed about every tiny detail.

To get a diagnosis for your symptoms, you need to go with the flow of things and let the medical professionals 'do their thing' so that they can do their job of diagnosing you.

If you are worried that you may have a neurological condition, then you should see a neurologist to get their specialist opinion. It sounds like trying to do the diagnosing yourself is raising your anxiety levels, which in itself is not good for you.

Understandably, you are worried about what is causing your symptoms. But please do not let worry and anxiety take over your life.

I used to be a worrier, but have realised that worrying drains our energy and does not achieve anything.

Please try to take one step at a time. First step = Chill out this weekend and don't worry so much!

Best wishes
Kayleigh

P.S I am approx your age and although my diagnosis was not what I hoped for, my life is far from over and I try to stay positive about things, as do many many wonderful people on this forum. Whatever life throws at us, we must be brave and stay strong! It is amazing what having a positive attitude in life can achieve

[Iron Will]

Hi Shepster

Is there any way in which you can dial down your extreme health anxiety?

It may be that getting stressed will make things worse.

As Ellie has already said, there is really no pain associated with motor neurone disease.

What I've said before elsewhere here is that motor neurone disease is no respect-er of balanced pairs of muscles - so in my forearm for example I have pulled muscles where the extend / contract pair is unbalanced.

But this is a normal muscular ache and nothing to do with motor neurone disease per se so there might be pains your shin from exercise - not from when the neurons are dying.

Again, weakness in hands could be motor neurone disease but cramping?

And pain in your wrist could possibly come from exercise but certainly not from motor neurone disease.

Do let us know about your emg and nerve condition study on Monday.

Concerning numbers do have a look at some other threads on the forum - somebody will correct my technical terminology that incidence is quite low perhaps only 5000 people extant in the UK at any one time with the disease because diagnosis is often late and some people do not live very long post diagnosis but it seems that possibly one in 400 or more have a diagnosis of motor neurone disease at death.

Take it easy over the weekend as worrying will probably only make things get worse.

Warmly

Andy

easy for us to say but you simply have to calm down, you are not helping yourself or anyone trying to diagnose you. I must say it doesn't sound like MND. my legs weakened almost instantly. limping in the late August to mobility scooter in the February. you seems miles off that so try to relax. you are very young so the odds are in your favour

good luck.

p.s. sorry to be blunt.

[Shepster]

Hi everyone

Been for my emg and nc this morning.

They werent too bad. Hardly felt to needles with the emg. The nc was actually a little more painful as it sent the electric shocks up snd down my leg. It reminded me of the shock when you catch your funny bone.

The emg itself was just quiet the a loud noise when i tensed or moved my muscles. The sound reminded me of when wind is blowing into a microphone.
He didnt give me any indication of whether it was ok or not.

He did say one strange thing, he asked me if i had had any problems with my sciatic nerve? I replied that i hadnt.

Why would you think he asked that?

[Guest]

Hi everyone

Been for my emg and nc this morning.

They werent too bad. Hardly felt to needles with the emg. The nc was actually a little more painful as it sent the electric shocks up snd down my leg. It reminded me of the shock when you catch your funny bone.

The emg itself was just quiet the a loud noise when i tensed or moved my muscles. The sound reminded me of when wind is blowing into a microphone.
He didnt give me any indication of whether it was ok or not.

He did say one strange thing, he asked me if i had had any problems with my sciatic nerve? I replied that i hadnt.

Why would you think he asked that?

as we discussed on the phone, slipped disc would give you sciatica - you gotta stop worrying so much mate!

[Kayleigh]

Hi Shepster,

I agree with Jonboy.

Try to stop self diagnosing. The next step is to get the results of the tests you had today. Until then try to relax!

All that 'Dr Google' is going to do is give you 'possible maybe's'. Let the professionals do the diagnosing - that's why they went to medical school for so long, and it is what they are paid to do!

Kayleigh x

P.S welcome to the forum jonboy.

[Guest]

You don’t have ALS
Why?
1) you have parasthesia
2) you don’t have fasiculations
3) You have no measurable progression in 5 months

[Olivia H]

It would be great if there was a definitive diagnosis/test for such a serious condition, rather than the prolongued process that so many of us have to go through. I personally have lots of symptoms which are not common to mnd, but others that are, and 2 emg tests have been definitive. But my symptoms have barely changed in 6 years, after the first 6 months, which is pretty unusual. I can only feel for those who suffer the rapid progression of this horrible condition. Equally, I strongly believe in being positive and adapting to survive. When I was first diagnosed I got the distinct impression the medical people expected a fast decline but thankfully not so. I stop looking for little changes and hyper scrutinizing everything because I think it makes you worse. I think this can be beaten.

[Kayleigh]

Hi Olivia,

I like your positive attitude.

It is good to hear that your symptoms have barely changed in the last 6 years.

I don't know what the future holds concerning how quickly my health is likely to decline. Like you and many others on this forum, I try to focus on living life as fully as I can - there are still happy times to be enjoyed and special memories to be created

Kayleigh x

[Shepster34]

got my results from my emg. they said they were normal in my arms and shoulder. I just dont get it. my arms are so thin and weak. I can move them but it's very painful like my elbows are not being held together properly by my muscles anymore. my ck blood test came back as 85 ref 40-320. my gp says that's normal. it's both arms now but right is worst.

the worse bit is the pain when I move them. especially when bending or twisting. strangely my grip is fine on both hands.

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[matthew55]

Shepster Firstly Pray that you don't have MND/ASL and secondly strart taking Fluxoetine. 🤗😁😘😍xx

[denise]

Im thinking great things look good but im thinking not so good because you don't know what's wrong.

🤔

[Gordan1111]

Hi Shepster it sounds hopeful. What does doc say?

[Suefromwakey]

Shepster it cant have been left just like that, whats your next plan?

[matthew55]

I have to say my only pains are in my neck and my thigh which wakes me up. Nothing in my arms or hands despite extreme muscle wastage. I am not a doctor but you really don't sound like someone with the same thing as me and for that you should be grateful. 😁🤗😍😘xx

[Mmsm]

Hi. Yesterday I received my diagnostic MND bulbar. My symptoms start first week April this year one week after the first jab for covid. Less 3 months I can't eat, drink and almost not talk, losted more than 10kg weight. Struggling carry my shop bags. They say my life will be finished soon. But on this moment I just thinking about my kid's, one is diagnosed with autism. I'm scare for them more than me.