Old 01-12-2018, 06:13 PM #1 (permalink)
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Question Symptoms worsening in 2 months

Hi guys,

I am new to this forum so my apologies if i get this wrong! Any help would be much appriciated as i have been dealing with these symptoms for 2 months now and have another 2 month wait to see a neurologist and i am getting concerned as things are looking and feelinh worse.

Here is my timeline and symptoms

6 to 9 months (dont remember when i first noticed) muscle twitches head to toe. Short lived and like wriggles under the skin constantly all day.

Suffered vertigo on and off for 18 months.
Mood has been terrible; irritable and find it hard to concentrate the past year.


2 months ago a chronic left thumb twitch (lateral movement) that lasted 5 weeks and has stopped.

6 weeks ago whilst still experiencing the thumb twitch my right thumb started doing the same thing but was only occasionally and even currently it only does it once a week if that.
Building on this my right thumb has progressivily become very heavy and is getting quite stiff. Its worse after i use it for a long time (typing).

3 weeks ago my right forarm began to feel very tender and strained and tight. It hasn't gotten better it seems worse each day and gets tired easily. There is also a clear dent right in the spot giving me troubles. It is starting to feel weaker.

Around the same time 3 weeks ago i felt a little twinge in my left calf. Didn't think anything of it until it started getting very stiff after a walk and walking up and down stairs. I took a look at it and found 2 clear dents in the inner calf muscle. It has progressivily gotten tighter and stiffer thru that part of the inner calf and walking for long periods is getting harder almost having to limp dependinh on how much i use it. It still allows me to run and jump but it feels very tight after use. It feels weaker than my right leg.
GP looked at my leg and i think she just blew it off as nothing.

Have also noticed I'm clearing my throat a lot latley.

I have tried physio, chiro and all sorts of therapy but nothing is improving.
I still have widespread spasms, now matched with muscle dents (atrophy) and some weakness/ stiffness.
Bloods tested 6 weeks ago all normal
Cervical spin mri normal
Brain mri in may 2017 was normal.
Currently waiting a restest of bloods including B12 as i have been low in the past.
NCS test in a couple of weeks.
Neuro appointment in 2 months.

Can anyone help me with this? ALS does concern me and so does MS. My concern is the long wait I'm facing and how fast symptoms are moving.

Thanks
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Old 01-12-2018, 07:23 PM #2 (permalink)
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Default Re: Symptoms worsening in 2 months

You’ve described twitching, spasms, stiffness, muscle tenderness, and dents. These are fairly common nonspecific symptoms. I would not be concerned about ALS in the absence of muscle function failure, which you have not described. Hopefully your neurologist will reassure you. But based on your description here, I wouldn’t be too worried.
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Old 01-12-2018, 07:27 PM #3 (permalink)
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Default Re: Symptoms worsening in 2 months

I concur with Karen.

Nothing you've listed is associated with ALS onset.

Good luck, good bye!
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Old 01-12-2018, 08:20 PM #4 (permalink)
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Default Re: Symptoms worsening in 2 months

Hey guys,

Thanks for all that. So i shouldnt be worried about the calf muscle feeling like it going to give out on me and progressivly getting worse?
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Old 01-12-2018, 08:47 PM #5 (permalink)
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Default Re: Symptoms worsening in 2 months

No, worry and get it checked.

But drop ALS from your vocabulary.

EDIT

ALS doesn't "feel", it fails.

I feel no different than any of my other 60 years, but I'm a quadriplegic.

I'm typing this with my eyes.
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Old 02-09-2018, 01:58 AM #6 (permalink)
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Default Re: Symptoms worsening in 2 months

Hello everyone,

I am very thankful in advance to anyone who reads this post and takes the time to reply with any helpful advice on what to do next as I am stumped.

I wont go into details about symptoms as they are listed above in the first post. Just note things have gotten worse in the spots mentioned above. Mainly my right thumb has now lost about 3/4 of ROM and is extremely twitchy/ stiff after I use it too much. The same stiff / tight / strained / tired / weak (combination of all really) feeling is travelling up the right elbow and triceps during use and even at rest.
My calf is still the same just tighter even at rest its just tight all the time - the same weird hole in that muscle causing the issue is still there.

Now my 2 GP's have done extensive blood work with nothing aside from high glucose and LDL has come back - which I am now controlling.
MRI cervical was clear
MRI brain clear
NCV was clear - no carpal tunnel etc.
I do not have pain or sensory feeling - there are no pinched nerves anywhere that they can see
My issues are there 24/7 they do not come and go

I saw a general neuro who was extremely rude and unprofessional and didn't help in the slightest despite both my GP's writing him referrals about their concerns.

Both my Physiotherapist and musculoskeletal therapist both agree its nerve related but are unsure what's causing it. They can no longer help me because their treatment is NOT helping for 3 months nothing has improved only worsened.

Now I am at a loss. I have 2 GP's and 2 physios say nerves.....how can I sort this out? I think I need to see a Neuro Muscular specialist but I have no idea who any good ones are in Brisbane. My doctors have all but given up on me and said they don't know what to do.

I am a newly graduated Clinician and its affecting my work and I am trying to be proactive and seek help but nobody wants to help me. Its affecting my everyday life, I cant use my thumb to cook, type or anything let alone exercise anymore with my leg and arm.

I am NOT saying I have ALS nor do I wish that but I know you guys are extremely knowledgeable about going to the right people to seek the right diagnosis whatever it maybe. All I want is for someone to help me so I can treat whatever is causing this nonsense.

Can anyone point me in the direction of some good neuros where I am from?

Thank you for your time again
Dani x
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Old 02-09-2018, 03:56 AM #7 (permalink)
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Default Re: Symptoms worsening in 2 months

Royal Brisbane & Women's hospital - Dr Henderson runs the MND clinic there - you won't get better. If you work in health I'm surprised you are not aware of their incredible neurology department.

You will of course need a GP referral, but you should get in within a couple of months easily.
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Old 02-09-2018, 03:59 AM #8 (permalink)
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Default Re: Symptoms worsening in 2 months

Hi Affected,

thank you VERY much!! I am only newly graduated so I'm still learning the ropes and all the affiliations of QLD health. I work in exercise physiology so Neuro is not my area of expertise! But thank you again very very much
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Old 02-09-2018, 04:01 AM #9 (permalink)
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Default Re: Symptoms worsening in 2 months

You are welcome - we were diagnosed by Dr Henderson there, it's a centre of excellence.

However I don't see ALS in what you are experiencing, but a neuromuscular consult may now be helpful.
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Old 02-09-2018, 04:05 AM #10 (permalink)
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Default Re: Symptoms worsening in 2 months

I am in agreement with you totally. I do not see ALS either but something is going on, my team of doctors around me all agree so it's time to sort it out.

Thank you again so much!
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Old 02-09-2018, 09:34 AM #11 (permalink)
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Default Re: Symptoms worsening in 2 months

Not that my opinion matters in the least, but what about seeing a psychiatrist? With 2 GPs and 2 Physio's who are saying "nerves" maybe it's time to start looking at why? Just a thought.

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Old 02-09-2018, 02:20 PM #12 (permalink)
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Default Re: Symptoms worsening in 2 months

Hi Angie,

I should of clarified that they think i have a underlying nerve issue causing my movement troubles, not an anxiety issue. I hope that makes sense.

Dani
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Old 02-18-2018, 12:54 PM #13 (permalink)
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Default Re: Symptoms worsening in 2 months

Quote:
Originally Posted by Angiegal View Post
Not that my opinion matters in the least, but what about seeing a psychiatrist? With 2 GPs and 2 Physio's who are saying "nerves" maybe it's time to start looking at why? Just a thought.

Angie
Getting any kind of a diagnosis, particularly when it may relate to a very elusive end, can be very frustrating.

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Old 02-19-2018, 03:33 AM #14 (permalink)
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Default Re: Symptoms worsening in 2 months

Hi everyone,

I really didn't come here to cause any trouble I just wanted the name of a doctor in my area which I now have a referral for, many thanks to Tillie for doing that for me. I wasn't even going to reply to all of this but I will so I can move on.
I know my body extremely well, always extremely active and working as a PT for 5 years. I also know the human body functions and how it works. And I know that whats happening to me is not normal. I never said I had ALS.

I had a fall 12 months ago out of nowhere and for no apparent reason on my left ankle. My "dents" were never there before and how coincidental that I discover them after having constant tightness and fatigue in my calf and arm exactly where those "dents" are. There is literally a chunk of my calf missing. My outer forearm is so tight the muscles look like their pumped up 24/7. I think I would have noticed that before. I can no longer walk my dog. My big toe no longer can flex and my thumb is basically there for decoration and if i try to exercise my whole leg and arm stiffen to the point where i cant use them. Enough said.

It's fine I know something is wrong, and until I know what it is I am living my life to the full because obviously whatever is happening to my isn't stopping. I'm just going to wait until I get to the point where someone will take me seriously until then I'm just living my life.

Take care all
Dani
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Old 02-19-2018, 09:25 AM #15 (permalink)
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Default Re: Symptoms worsening in 2 months

Hi Dani,

After you've seen a neuromuscular specialist, please let us know how the appointment went. Hopefully you get in to see one soon.

Take care
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