Advice while awaiting neuro appointment

[Brooksy B]

Hi guys

I just wanted to jot a few things down that are going on with me!. I will preface this by saying I am seeing my doctor and am awaiting a Neuro appointment.

About a year and a half ago I started with stomach pains and problems.. back wads and forwards to various Dr's and the upshot was "IBS".

I had a colonoscopy last September which resulted in me having some rib pain .. since then things have moved on. I have weakness in my arms and hands, my thumb on left hand is stiff, my hands and shoulders and associated muscles hurt if I carry anything heavy etc.

My speech has become quite horse at times, bad on a morning like we all get but then also getting worse as the day goes on! I'm also producing more phlegm than normal and have weird discomfort in my neck. I don't have a problem swallowing.

In the last there months I've had tingling in my feet, calves and legs. Sometimes I have worse tingling when I urinate. In the last 4 weeks I've developed what you guys call fasciculations in my calf of my right leg (it's there on and off but becoming more frequent). The left leg also has minor twitching along with my left shoulder and left forearm (near muscle)

My weakness isn't stopping me carrying anything heavy as I'm left with muscle and joint pain. I wake up on a morning and whichever side I've been sleeping on is numb with pins and needles in corresponding hand.

I'm not asking you guys to diagnose me or offer anything beyond an opinion! I don't want to insult anyone living with this disease or indeed any family members that might be on this forum. It's the waiting that's difficult and the fact my Dr can't / won't give me straight answers.

Thanks all

 

[Alyoop]

You are right, no one here can diagnose you. Your symptoms in know way resemble ALS. It's good you have been proactive and have some appointments organised to help get it sorted.

Be careful not to throw a heap of symptoms together and try and fir them into a syndrome. Could well be a heap of things going on.

Rib pain for instance, is very common after a colonoscopy, it can last a couple of daysto subside, and be extremely uncomfortable. It's caused by the air that they pump into your colon to help the scope get a good view. The air travels up and irritates the Phrenic nerve ( I think).

Lying on your hands and getting pins and needles is very common also. It's just nerve compression, which is why it subsides once you are out of bed.

Fasciculations are common , and most people experience them at some time in their life, and are often gone unnoticed.

Muscle pain is not part of ALS, so again it could be viral, inflammatory, etc.

I hope your appointments go well and you get some help. Make sure you ask plenty of questions and don't leave the drs office until you are completely satisfied with the answers.

Best wishes

 

[Grateful]

I should explain that I do not have ALS but I do have severe bronchiectasis . I am therefore baffled by your reference to producing more plegthm than usual.

The vast majority of people don't produce any at all, so increases in phlegm, which you don't seem concerned about, are pretty weird. I would suggest that you get checked over by your GP again; it would be a pity if you died from a curable condition because you are too busy worrying about ALS....

 

[HelenL]

Did your doc test your muscle strength? What you may "perceive" as weakness is more often than not, not real weakness. If you can still carry stuff, but your joints hurt later on, NOT weakness. You wouldn't be able to pick it up, or turn the key, or cut your food with real weakness.

Sounds like you have a couple of things to talk to your doc about, but as the others have said, not all of them are probably related, and most do not sound like ALS.

IF you were choking on water, drooling, etc., then you may want to get that checked out; just having a hoarser voice and increased plemgn (sp?) is not.

Good luck, and try not to worry about anything as drastic as ALS. Check out the BFS'ers for more info on the fasticulations, and keep us posted. Good luck!