My situation

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Mattloveday2503

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Learn about ALS
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UK
Hello Everybody,

Firstly thanks for listening! I have had a pretty anxious few weeks trying to work out what is wrong with me. Admitidally I have raised a lot of money for MND in the past so I have always been aware of the symptoms of the condition but have overused google in the last few weeks...

Anyway around the start of December I started getting tinnitus in my left ear - had a hearing test and they found a certain frequency hearing loss that couldn’t be explained - ended up seeing and ENT to rule out anything serious and they did an ear MRI and found no issues so just put it down to unfortunate hearing loss and so the tinnitus continues - this is separate to my post but thought it may be relevant

At the end of January this year I started to have episodes of finding talking difficult - my mouth would ache and I would keep mixing words up (almost like I am speaking with a thick tongue)- this continues to happen to today and I feel it is getting worse. Im not slurring as such but keep having to pause or mix my words up - only I am noticing this

Around the start of feb I started to get muscle twitches everywhere and these are becoming more common (worse at rest but noticeable when walking) I like to run and my legs have started to feel almost weak and jittery when I am out

I am scared that all of this is starting to lead to an MND diagnosis. I have spoken with my doctor who said these symptoms are quite vague and we should leave it a few months and then call back if this is still happening. I thought I would reach out to you guys to get an opinion as the thought of waiting for such a long time with my current mental state worries me

Not sure if my profile states it but am about to turn 34

Thanks everybody for any thoughts you have
Matt
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TippiLeigh

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Jun 13, 2020
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DX UMND/PLS
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07/2020
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Hi Matt! Has your primary physician given any indication of what they think might be going on? Usually they'll be the one to start with initial screenings. Mine sent me for several different blood tests and imaging. When that didn't reveal anything, she referred me to a neurologist who was able to do a neurological exam and noticed my upper motor neuron symptoms.

Unfortunately work ups in the neurology realm (and not saying yours is neurologically related) seem to take a very long time. (I guess in health care in general.) Like building blocks. They tend to start slowly by ruling things out, so it's a constant game of hurry up, get the tests, then wait, then move on to the next test, and so on and so on, until they figure out the correct reason for your ailments. Hang in there! I know how frustrating it is to not get answers quickly. Best of luck and I hope you get some answers soon.
 

lgelb

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If you are the only one noticing speech problems, there is nothing to worry about on that score. Stress, sleep and allergies all play a role in dry mouth/lips, for sure.

Your doc is right -- no one would rush you in for an EMG on the basis of twitches and jittery feelings. Try keeping a food/drink/sleep/stress diary, re-evaluate your sleeping surface, etc. There is no reason to think about ALS.

Thank you for the fundraising you have done.

Best,
Laurie
 
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