Does this sound like ALS?

[AnxiousAlex1]

Hi,

I am a 42 yr old male, desperately looking for answers to symptoms that I'm experiencing, starting over the last 3 months. I appreciate that there must be a sea of panic merchants with these types of posts, and so fully understand if some who read this do not feel it worthy of a response, however for those of you able to empathise with the fear and concern I am experiencing currently, I would be most appreciative of your comments and opinions on the symptoms I describe below:

3 Months ago I had intense pain deep in the left shoulder which radiated down left arm. This has subsided very slowly over last 3 months and although not completely gone, it is only a shadow of the pain it was initially.

At the same time as the above, the thumb on left hand began to twitch. The twitching ceased after a couple of weeks, however I noticed that I could feel the tendon in the crease of my left hand between thumb and forefinger - it is very pronounced and although it doesn't look markedly different from the right hand, a simple touch reveals that it is - as you cannot feel the tendon in the crease in the right hand at all. After scrutinising both hands the only other apparent difference is that the bone in the top of the left hand connected to my ring finger is visible when extending all the fingers of the left hand, whereas it is not when I do the same with the right. Also my left thumb knuckle and left little finger knuckle produce an aching pain when tensed. This has remained the same for the last 3 months but there is no discernible weakness.

Also starting 3 months ago I developed a twitch in the lower lid of my right eye. This is intermittent but happens everyday. Over the last 3 months the intensity of the twitch has decreased but it remains present (and is twitching as I write this).

2.5 months ago I started having a very notable intermittent 'buzzing' feeling in my feet. Both feet 'buzz' but not usually at the same time. The buzz is through the centre of the foot and around the ball of the foot just back from the toes. This was very intense initially and is still present on and off on a daily basis but has subsided in intensity.

Also 2.5 months ago I noticed an ache in my left big toe, especially if I place pressure on it when walking. This has remained constant.

3 weeks ago I noticed pain from the outer blade of my right foot across the top of my right foot and to the ankle. This is only noticeable when I roll onto the outer foot when walking and remains the same today.

Last point to mention is that I have also experienced a tremor throughout my whole body on occasion over the last 3 months this usually happens late at night whilst laying in bed.

What really has me in a spin and prompted me to start this thread is that as I awoke this morning I felt my right thumb twitch (up till now all hand symptoms have been confined to left hand). It has not repeated this since this morning, however I have also had a twitch in my left upper thigh this morning.

I was referred by my doctor to a neurologist who examined me and sent me for an MRI of C Spine for which I am awaiting the results. However from all the reading I have done I cannot see how an issue with the C spine could explain all the symptoms above.

Once again any appraisals, opinions or nuggets of wisdom that can be handed down to me at this point would be gratefully received.

Also can anyone recommend a ALS/MND specialist in the north London / Hertfordshire area that I would be able to book an appointment to see directly?

Many thanks for taking the time to read through.

Alex

 

[affected]

Please read the sticky as it answers all your questions and allows me to congratulate you that you have ZERO ALS symptoms

I'm in Australia so can't help with recommending a specialist there but we do have some UK members who may help. Maybe go back to your doctor and ask this?

All the best

 

[Atsugi]

Alex, nothing you've posted sounds remotely like ALS, no matter what Dr Google said. Ask your GP to fix your arm and you'll be fine.

I read your post. Now you need to read our sticky. You don't have ANY of the symptoms of ALS. In fact, your symptoms tend to point AWAY from ALS.

 

[AnxiousAlex1]

Hi Tillie and Atsuqi,

Many thanks you for your replies and thanks for pointing me in the direction of the sticky. All makes sense.

I guess the worry is that these symptoms are a precursor to weakness although the sticky seems to infer that it is the weakness or atrophy itself which is usually noticed first.

However I also read somewhere that the average time to diagnoses is 1 yr from onset of symptoms which is obviously a scary thought when experiencing these odd symptoms.

Unbelievably my right thumb has continued to twitch today (same as the left did 3 months ago) making me even more anxious (as the sticky says I believe I do need to evaluate my state of mind re the anxiety Guess I just really need answers to what's causing the peripheral neuropathy I'm experiencing. Would be keen to hear from others if they experienced similar and what this could point to so I can discuss with my neurologist. I also think having read the sticky that an EMG of the left hand nerve would be a sensible step.

Once again thanks for replying.

Kind regards,

Alex

 

[GregK]

Your "odd symptoms" have nothing to do with ALS so it matters little if it's 1 year or 1 decade to diagnosis.

It's also a bit of a stretch to call your transient twitches and odd pains "peripheral neuropathy".

Two knowledgable and experienced members have told you it doesn't sound like ALS.
ALS (rather MND) is the sole reason for this site.
So any discussion of "what it might be" is probably not going to happen...

Work with your docs & good luck.

 

[skipper66]

You don't have any ALS symptoms so there is absolutley no need whatsoever for you to even see a ALS specialist. Go to your physician and ask him what to do about your arm. Stay off of Dr. Google and any other internet site for a diagnosis. Let the doctor's do their jobs. I am truly sorry you are experiencing any health issues at all. But, this forum isn't going to be able to help you any at all. Because, you just simply don't have ALS related symptoms. Read the stickies again. Then if you have specific questions on things you don't understand about them bring them up with your physician. Then there will be no understanding and you'll not have any doubts in your mind. Best of luck to you, Ki,

 

[AnxiousAlex1]

Greg, thanks for your frank response, and grateful for the replies received.

my symptoms truly are odd and worrying to me, but I guess I have at least gleaned some reassurance through this experience.

I will continue on in search of answers.

Thanks again.
Alex

 

[Atsugi]

Food for thought for the rest of us:

Some people, like this poster, are concerned about "precursors" to ALS. Of course, there aren't any. Numbness and tingling or feeling weak muscle don't eventually become ALS.

Does our sticky address "Precursors: when it's not yet ALS"? That might be a good way to assure people that they aren't "leading up to" ALS.

Also, the "average time to diagnosis" might need more detail. I don't know. Krissy was diagnosed in a matter of probably 3 weeks. But maybe that's exceptional.

 

[Nikki J]

OP best of luck. I am glad you do not have cause to linger here

Mike I think it is splitting hairs. Precursors vs early symptoms. If people actually bothered to read the sticky and believed it we would have fewer DIHALS posts
It is true time to diagnosis is usually long. Most people do not rush to a neurologist at their first symptom, they watch it a bit, visit their pcp. Have a test or two get sent to an orthopedist maybe before they see a neurologist have some tests get referred to a neuromuscular doctor. It takes time. Krissy and I were exceptions to the rule because we had more experience in the area than many and we had unusually good access.

 

[Atsugi]

It makes me cry, it literally does, when I think that people with paralyzed hands or feet aren't worked up and fully diagnosed expeditiously. You're right that Krissy had great access. We all should.