New symptoms confirmed by Doc?

[CB1977]

Hello- I have been posting here for about 18 months now. I have not posted for a while. I decided to come back to give an update and to also get some input on my most recent test results. I don’t want to make this post tedious to read so I wont go back and do a re-cap of all of my symptoms over the last 2 years.



I recently had a sleep study done. The results from the test were that I had severe sleep apnea when I sleep on my back. The results specifically stated that when I "sleep on my back"? I was wondering if this could be due to my breathing muscles weakening. Many of my muscles are becoming increasingly flaccid. Including weird muscles that you usually don’t/cant work out (like muscles in my face, tops of my hands, around my eyes, bottom of my feet, ect.)



The other issue that I have had for at least 7 months but continues to progress and get worse is limbs falling asleep. Specifically, my pinky and ring finger on both hands (right is worse). This happens at night when I am sleeping but it is not due to me sleeping on my hands or in an awkward position. I wake up often, resting with my hands down beside me not being constricted in any way and the side of my hand, my pinky, and ring finger are asleep, numb, and tingly. Also, it is very uncomfortable now for me to sit my elbows on a table. It feels like the funny bone nerve is exposed. I know that this is 100% related to the big picture of whatever is wrong with me. I was wondering if anyone on this forum has ever had this issue and if so what their Dr. thought it was caused by?



I also was just tested for Celiacs but haven’t received the results yet, neuro's are running low on ideas at this point and wanted to take a shot at this one. My neuros have no clue at this point what is wrong with me but they do concede that I have something physically wrong that is slowly getting worse. I hope everyone is doing well and hanging in there. Thanks for any and all input.



CB1977

 

[rhythman]

I'm new here and during the past 9 weeks, I've gone from having slight chewing issues and handwriting problems, to having every bulbar issue and problems with all 4 limbs. Most of those symptoms have appeared and progressed in the past 4 weeks. Sometimes I think that's so rapid that it's not likely als, while other times I feel like it's possibly very fast progressing als.

The reason I'm replying is to let you know that for the past 9 nights, I've experienced limbs being asleep (pins and needles) as have you. I will wake up on my back and all limbs will be 'tight' or completely asleep. I have to sit up and move them to get feeling back. Sometimes it's random, like a left arm and right leg. Also, this has been happening during the day now with my feet. If I sit for a few minutes or even stand in one place, my feet 'fall asleep'...not every time, but several times each day.

I've read that these sensory issues are not typically als onset symptoms so that's encouraging. The only reason I'm still concerned is because I drop things with both hands and stumble with both feet (although my right side is more frequent).

Sorry for rambling...just wanted you to know that you're not the only one with this issue.

 

[GlenBrittle]

Hey CB,

Sleep Apnea is caused by your soft pallet collapsing and blocking your airway. At that point , your brain wakes you up enough to contract the muscles to pull the soft pallet back so you can breathe. The problem is that you leave the deep restorative sleep to breathe.

On your back , your soft pallet is right above your airway, that why its the worst position to sleep in.

I had sleep apnea 7 years before I was diagnosed with ALS. If you have not done so already look into a CPAP or BiPAP (better IMHO) to help you get some restorative sleep. That would be the first to do. You must be exhausted.

Glen

 

[laurel]

HI CB,
Obstructive sleep apnea can cause peripheral vasoconstriction. Hubby has CIDP and sleep apnea, and he uses his CPAP religiously. Not doing so can lead to heart problems and strokes. Good luck.
Laurel

 

[rhythman]

Hey Glenbrittle. I think the Via train used to take me through Alexandria 25 years ago when I used to take the train from New Brunswick to Carleton U in Ottawa. Beautiful country side.

 

[GlenBrittle]

Hey Rythman,

Its still runs from Ottawa to Montreal every day. I think there are 4 stops daily here.

Small world.

Glen

 

[BarryG]

Four stops a day? Holy moly batman! We live about 200 meters from the main Canadian CN line and while there are many freight trains per day the Via passenger train comes through a couple of times a week. Not as many passengers out here I guess.

 

[KeeKer]

I had pain in my elbows too. Due to arthritis. Got steriod shots and the pain stopped for a while. Back again. Fingers tingling and feeling like falling alseep for months now. Doctor said due to stress or a pinched nerve in my neck. I sleep on my back too.
Barry main line goes through Melville too. Via stops once a day. Guess they just don't drive as much out east.lol

 

[CB1977]

I just got the results back on the Celiacs test, it came back negative. Oh well, I dont get my hopes up anymore when I take these tests, I have had so many over the last 18 months. When I started doing some research into the issues with my pinky and ring fingers, I found something interesting. Those two fingers are connected to a different main nerve than the rest. If anyone has any additional input on this let me know. Take Care.

 

[Moonmark]

Hi CB--

sorry you still are having problems with no diagnosis. I am in the same boat (for the past 8 months or so). I keep getting diagnosed with certain things, such as tendonitis of the shoulder, wrist, and elbow, (which curiously, seems to have spread to my right foot and ankle, causing me to limp around sometimes) and a bad vitamin D deficiency, but so far no one has connected my various symptoms to an underlying cause. I have a sensitivity in the elbow area when I rest my elbows on a hard surface. maybe some problems are related to whatever underlying neuro condition you may have, but others are not related.

do you spend a lot of time on the computer or engage in other repetitive tasks using the hands? there is carpal tunnel syndrome, but there are other conditions that affect the nerves of the arm and hands that are considered repetitive stress injuries.

Guyon's canal syndrome causes numbness and tingling in the pinky and ring fingers and can coexist alongside Carpal tunnel syndrome. you can read about it here:

Hand University

I have not read all your posts, but let's hope that all your problems do not ultimately add up to ALS.

take care and have a fun Halloween--

Sandra

 

[Erica]

CB1977- Have you had an EMG? Nerve conduction study?

 

[CB1977]

Yes, I have had multiple EMG's, my last was in May. All were considered normal and only showed fasics. They are going to do a follow up EMG in Jan. I have also been tested for a ton of other things...MG, Stiff man syndrome, muscular dystrophy, Celiacs, MS, Lyme....they are pretty much out of options at this point. I have been diagnosed with abut 5 different things in the last 18 months....Post Viral thing, Chronic Fatigure, Fibromyalgia..ect. The docs are truly at a dead end in my case. Thanks everyone for your input, take care.

 

[rose]

CB, Re" pinky, ring finger. Years ago, ~like as in about 25 years~ I started to have pain in my left hand ring finger and pinky, when I needed to use the bathroom (#2) For many consecutive years I noticed this a lot, but not hardly ever anymore. I'd assumed it was due to some sort of scar tissue (3 previous c-sections & an exploratory surgery) or endometriosis building up and causing pressure on a nerve. I don't see how this could be of help to you, but you never know

 

[laurel]

Happy Halloween Rose--is that really you packing the heat?
Laurel

 

[GlenBrittle]

Naaaa ... its her new boy-toy.