Symptoms for 5 years

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Declan96

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Learn about ALS
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Hi everyone. I’m so sorry to come back and post on here but im completely stumped. I think I posted back in January 2020 (previous thread here) regarding getting bitten by ticks in 2019 and having an abnormal emg. Since then I’ve had multiple mri scans and blood tests. All normal again including for lymes. A week ago I had my second emg and I expected the worst but was told by the neurologist it was normal. I feel so much worse than I did after the first test which makes no sense to me.

So my symptoms have gone through periods where they seemed better over the years and I could run and train lightly but they have come back much worse in the last 3 months. Fasiculations all throughout my body; my arm or leg will start to feel really funny and then I’ll have massive spasms in the limbs. I have body jerks on a regular basis. The strangest symptom of all is the snapping and grinding in all of my joints. If I out stretch my arm for example you can feel tendons snapping. This happens in my knees, arms, wrists, feet and neck continuously. It’s not painful but it’s not right at all. I’ve read it can be due to all the muscles weakening. I also suffer from what the doctors have called GERD, constant reflux all the time. I’ve felt like I’ve struggled swallowing for almost two years now but not sure if it’s related. I feel like I’ve started to develop cognitive issues which I’m not sure are related but saying the wrong words all the time, difficulty spelling and concentrating. Spells of vertigo and dizziness.

I have suffered with health anxiety in the past and I’m trying to manage the best I can with counselling. Again I do apologise for posting but Im not sure if MND can present so slowly or like this. My neurologist told me I wouldn’t be able to walk into his surgery and not have clinical weakness by this point but also isn’t sure what it is. I get a copy of my emg results when I see him this coming week.
 
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Hi Declan-

Sorry you find yourself back here after 4 years worrying about MND still. That 4 years time period means that MND is definitely not the issue because you would have been very obviously impaired by now. The neuro has stated as such to you.

I will not say your issues are all caused by anxiety, but it is clearly a huge component of your struggle. It may be time to step up the intensity/change tack on managing your health anxiety, as it's causing you to worry and focus on a disease you don't have. Focusing on MND when you have symptoms not at all associated with that condition means a diversion from figuring out what the problem actually is.

Hopefully your emg results will provide further reassurance with regards to MND.

Take care
 
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Hi ShiftKicker

Thank you for your reply. It really is appreciated. I’ve gone the last 4 years after being told I had nerve damage telling myself I was healing as the neurologist told me and it’s all anxiety. unfortunately as you said there is something going on. It’s just no one is sure what yet. I just thought weakness and fasciculations point towards MND.

Again I apologise for posting here as you all have a lot on your plates.
 
Hi all

Once again I’m sorry I’m back posting here. I had the results back for my 3rd emg and there were many abnormal findings including left ulnar nerve compression in my left arm and neurogenic changes seen in pretty much all muscles tested.

My symptoms only seem to be getting worse. The cracking in my joints has become so bad it’s now causing pain in my knees and I’m struggling to walk. All my joints are so weak I genuinely struggle to get out of bed because of the pain. The twitching and spams continue 100’s of times a day, now leading to some cramping especially around the knees.

The worst thing of all is what’s going on in my head. I feel so confused and disoriented all the time. Forgetting things, getting confused in situations that people are starting to pick up on it. My neurologist has informed me that after one normal emg that the recent abnormal one doesn’t really mean anything at all. Feel lost at the moment as I feel I won’t be able to do my job as all my symptoms are progressing. I’m sorry to ask but does MND present like this. They seem to have ruled a lot out already.
 
If you share the emg report with your identification removed we can perhaps comment but you were already told by your doctor whatever they saw was meaningless

Cracking and pain does not sound like mnd. If you have cognitive issues then ask for neurocognitive testing
 
ALS isn't found in the joints, arthritis is. If your joints are causing so much pain, have you looked into whether you might have arthritis?
 
I’ve attached the findings below. I would be grateful for any input as I really don’t understand them apart from where fasiculations were noted.

Hi best friends14, I don’t think it is arthritis as such as the snapping has been happening for a long time and only started hurting recently. It’s more my joints are super flexible and there’s no support. Several times when I’ve had to push things in work there’s been a massive pop in a shoulder and it feels like it’s dislocated. If I go to lift the shoulder up it is ok but when I drop them I can’t without it feeling cog wheel like, almost like a judder.

Hi Nikki, I have brought it up but my Neurologist has passed it off as anxiety. The problem is I feel anxious because of the symptoms and not the other way around. The Neurologist did note brisk reflexes too but I thought that was normal.
 

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Hello-

There is usually a conclusion on reports like these. Are you able to post that?
 
Yes of course. I’ve attached it below. My neurologist ruled out any spinal issue due to the recent clean mri.
 

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It says you are strong and no atrophy. The changes on the emg are chronic which is not an ALS emg. It is certainly possible to have spinal issues show on emg and not mri.

You state you have pain and trouble walking and attribute it to weakness. If you really had clinical weakness your doctor wouldn’t have written strong. It sounds like pain is driving this not weakness.
 
Thank you for responding. You may be right, I definitely believe there is something amiss as I’m only 27 and struggle to do anything now but maybe I am barking up the wrong tree sort of speak. I think they’ve ruled out most autoimmune issues so they’re not sure where to go with it either. I’ll refrain from posting again but I really appreciate your insight.
 
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