Old 11-04-2018, 11:52 AM #1
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Default Progressive symptoms, very worried about ALS

I have been having unusual symptoms since a couple of weeks after the birth of my third child in April although things seem to have really progressed since late July. ALS only really appeared on my radar about 3 weeks ago when I felt my speech was changing. I have copied my main concerns below. Apologies if they don't all make sense, I have copied a list that I have been collating for my GP.

My main concerns are:

1. Left calf muscle 'gone'! I.e. it is flat where usually you have the calf shape , unable to control or contract (pain /cramp since end july, first felt in area end april). Twitches and the occasional shock/jump in lower leg. I still seem to be able to move as normal although I feel my knee is suffering a bit.

2. big toe left foot is very mobile cannot resist downward pressure on top joint

3. occasional scuffing foot when walking

4. stiffness hands/fingers/wrists and other joints including neck - worse last week or so particularly below thumb. both palms feels strange

5. weakness wrists/hands first in left but, now in both. harder to hold/lift children, fatiguing faster, getting pins and needles/buzzing with intense use. overall tension.

6. Possible atrophy of little finger, above inside right knee - i know these seem like odd places to perceive early atrophy

7. lump/tightness in throat in area of 'Adams Apple's , tongue has an odd feel and speech feels strange like tongue too big and tired. At times feels food sticking on swallow around adams apple. I feel like need to cough for no reason - at times too.

8. I can see what i think are fascilations on my tongue when it is at rest in my mouth. I noticed this in the 2nd week October.

9. dad had mnd, started in his late 50's with arm weakness. not aware of other family members

10. other areas noticed twitching/fascilations including right leg and left arm, stomach, palm hand and face

11. tightness in many joints all over.

I have seen my GP who has run lots of bloods all of which were clear. My spinal MRI is clear and the rheumatologist I have seen agreed I should see a neurologist, I have an appointment in January although am tryi g to get something sooner. I have a prescription for beta blockers as I am feeling super anxious right now.

The one thing I can't seem to explain away is the changes to my left calf.

I would be grateful for some experienced opinion while I wait.
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Old 11-04-2018, 01:41 PM #2
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Default Re: Progressive symptoms, very worried about ALS

The joint pain, stiffness, and tightness point away from ALS and more towards a rheumatologic condition. I’m glad you established with a rheumatologist. Keep in mind that rheumatologic conditions, like MND, can evolve over time and may not be instantly recognizable.

Musculoskeletal conditions can lead to weakness and atrophy in surrounding muscles.

The numbness also points away from ALS.

That said, it’s still definitely worthwhile getting an opinion from a neurologist, preferably a neuromuscular disease specialist, because your presentation is complicated.

Best wishes,
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Old 11-04-2018, 04:54 PM #3
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Default Re: Progressive symptoms, very worried about ALS

Thanks for your response Karen, it is a little comforting to hear that it may actually
be something else. I know i do need to try and remember there are other possibilities aside from ALS. I have promised my rheumatologist I will update him once I see a neuro. I certainly feel I have a lot going on at the moment, hopefully we can work out exactly what over the next few months.

Best wishes.
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