Years later...symptoms still slowly progressing

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ny1987

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Hi. I posted here for the first time about 10 years ago. While the very slow progression of my symptoms has me hopeful that it may not be MND, I really am at a loss and this is beginning to engulf me again, especially now that I have a son.

One call out, I have not had a recent EMG...I had a few early on, with the last one about 7 years ago, so a few years into my symptoms. I don't have them handy anymore, but I recall one registered a few fasciculations but not much else. The other I had sent to user named Wright on this forum back then...he had come back and said it didn't look like something that showed ALS but what it showed may have suggested a demyelinating issue. MS comes to mind however MS does not result in elevated CK levels. As far as getting a new EMG...I know I need to, I have just been too scared of what it may show. I have a two year old son now and I spend pretty much every non occupied second of my existence imagining not being able to see him grow up.

My next step is to go see a neurologist again (I saw several early on), as just mentioned above, fear has been the main thing preventing me from going again.

Below is a list of my symptoms as they stand currently. At this point they are impacting my quality of life but are not preventing me from doing things.

Breathing - cannot take a full deep breath, my chest does not move up and down when I take deep breaths ever, only my stomach. PFT results showed restrictive pattern, I don't recall the exact value. The pulmonologist said it wasn't extremely low but was lower than being overweight should cause. I've gotten all the other tests (xray, cat scan, etc. all negative) My primary care doctor about 4 years ago (before he moved to a new state) commented when he was concerned that my chest was not expanding when I was breathing during a routine physical. I also had a sleep apnea test done (I have it) and when the technician was preparing the apparatus that goes over your chest to monitor breathing, kept coming in and out adjusting it and was very confused, because it wasn't registering my chest expansion when breathing. The feeling of not being able to take a deep breath was actually the very first symptom i noticed roughly 10 years ago. It's very slowly but progressively gotten worse.

Swan neck deformity - This has been developing over a few years, was diagnosed last year with swan neck in my right ring finger. It is very slowing beginning to develop in my middle finger as well on the same hand (it's not very far along yet in that finger but the knuckle is beginning to concave). He tested me for RA which was negative, and I've had no hand injuries

Elevated CK levels - my last 4 CK tests have all been elevated over the course of a few years; 315, 312, 259, and 192 (most recent)

Urinary weakness - sorry if this is TMI, but it's purely medical. What seems to be the muscle that controls the end of my urethra is very weak, difficult pushing out both urine and semen, very weak streams. I have spasms in my urethra quite often that started before the weakness about 6 or so years ago

Ankle weakness -when I begin to run or walk, my right ankle will sometimes give out or almost give out on me. It's a strange feeling in that if I get myself jogging and this happens, it's almost like my ankle "sets" and then I don't have the issue anymore until the next time

Muscle fatigue - my muscles, especially in my hands/arms get fatigued/painful very quickly. Examples are doing things like stirring while cooking, using a screwdriver, etc. Will get very fatigued and sometimes cramp up very quickly

Muscle twitching - random, all over, basically since this began (literally everywhere, legs, arms, tongue, head, butt, etc.)

Myoclonus - this used to happen moreso in my legs, now its mainly confined to my fingers, where ever few weeks I'll go through a few days where a finger or two just move on their own

Atrophy - the main area is on my left hand. I attached a picture with my right hand for comparison. This is a spot that also specifically gets sore and fatigued when doing something intensive with my hands. There's a couple other areas that I think could or could not be but this is the main one that concerns me.
 

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Nikki J

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Go back and see a doctor. you have been returning to the forum since 2012.

Wright who commented on your emg has long since left but he was ( presumably still is) an EMG professor. His comments were expert.

CPK is an utterly non specific test and your recent one would be normal in many labs anyway.

there was no question I could see here. I still don’t think you have ALS but it doesn’t matter what we think. See a doctor have whatever tests and let us know their diagnosis
 

ny1987

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Thanks for the reply. I guess I didn't have a specific question...was moreso seeing if anyone had any particular thoughts based on what my symptoms are and the slow progression of them (very first symptom began in 2010). I know I need to go see a neuro again but while I set up that figured I would start here.

Thanks
 

Bestfriends14

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If you're overweight, and the weight has crept up more and more over the last decade, I'd say that's your main culprit. Every single issue you listed is related to an unhealthy weight, as well as every single one of your symptoms having nothing to do with ALS.

Any further questions should be taken up with your doc, not a forum of dying folks. When you post after a decade's worth of non-ALS symptoms, it's kinda mean. Most folks here have died and you've been blessed with a life that you cannot appreciate. It's terribly sad.

Best of luck to you.
 

lgelb

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If you are overweight and have sleep apnea, it is important that it be adequately treated. Especially with a restrictive pattern on your PFTs, you may wish to ask about BiPAP vs. CPAP so as not to work too hard in exhalation. Some CPAP machines allow for a difference of 3cm between IPAP and EPAP but that may not be enough for you. Apnea that is inadequately treated can result in early cardiovascular issues, and you'll want to stick around. Diabetes is another possibility for which you should be monitored.

You may also wish to consider an extra pillow, wedge pillow, or a hospital bed that gets your upper body higher and takes pressure off joints such as in your hand. I agree that there is no reason for you to be here, but encourage you to find a pulmonologist with a special interest in sleep -- not all do. Of course, there are also slowly progressing demyelinating conditions along with other neurological diseases, but my guess is that your primary issues are not neurological.

Enjoy life with your son.

Best,
Laurie
 
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