Update from my previous post

[terryburke162]

Previous thread Questions and concerns

I'm sorry I really didn't want to start a new thread but felt obligated to give the community an update. Not sure if you could unlock my previous thread or not but wanted to let folks know my MRI of my hip/leg showed labrum fraying/tear, .25in cyst, edema in my glute (in line with piriformis syndrome and productive diffuse osteoarthritis. I still have kept my neuromuscular specialist appointment for end of August but at least these are some answers to my leg pain. I still don't know why though the twitching/tremors remain, it's calmed a bit but is still with me.

I continue with PT but its painful and still see atrophy/flattening in my right outer thigh/quad.

 

[Nikki J]

We can’t unlock old posts per our admin. Linking your old post was the correct thing to do. Thank you.

Good luck with the continued pt. It should help your pt to have the mri results so they know exactly what they are dealing with. Twitches are no specific so please put ALS aside and concentrate on getting better

 

[terryburke162]

Hi there. I just got back from my appointment with the local als specialist, it was originally scheduled for August 31st but they called asking if I wanted an earlier one, I accepted. It was with the PA of the main specialist, and she performed the exam. Unfortunately, she referred me further for an emg with the top doc. She noticed the hyperreflexia in both knee reflexes, but the right seemed stronger =( and kicked a bit higher. My partner was with me and I completely lost control and balled my eyes out. She also noticed some clonus of the right foot, my physio did say that has been there. Just not sure why my physio didn't detect the knee reflex being off on the right. I'm scared again and can't get in for the emg until November. I'm also experiencing some shortness of breath again, some days are worse then others. I still continue to have pain in my hip/quad/thigh and will see the hip specialist for that next week.

I thought todays visit would have put this all behind me... doesn't seem that way =(

 

[lgelb]

I'm sorry that you're scared, but slightly asymmetrical reflexes are not some kind of automatic ALS diagnosis. Nor is bilateral hyperreflexia, which has many potential causes, some completely benign. We already know you have a mechanical problem with your hip/glute, and referred pain can inhibit movement, or cause" irritable" movement.

Physios are not really top of the food chain for evaluating reflexes.

A PA is more likely to refer you in any event. So I wouldn't freak out from this visit. Shortness of breath attributable to respiratory impairment from ALS doesn't wax and wane much, etc.

If the PA and supervising doc really thought you had ALS, it is much more likely you would have an EMG before November.

 

[terryburke162]

Thank you. Again for your guidance. It helps me calm down a bit. I did leave after the exam and left my partner to handle the follow-up scheduling. She later told me the PA pulled her aside and mentioned she called the supervising doc and explained she wasn't to concerned but because of my anxiety they will try to get me in asap for an emg. I can't say this is good or bad. The only thing I keep saying is I'm still strong even in my right leg. The PA even said no weakness. But the 3 beat clonus on the left foot and the uneven hyper knee jerk is a bit concerning. Not going to lie to you.

 

[Nikki J]

You should have been told 6 beats or less of clonus are not considered pathological. You also have a documented injury by mri that could have affected your reflexes. And reflexes can be off just because. Whatever this is or isn’t you urgently need to see someone to help you develop better coping mechanisms. The fact is life happens to everyone and sometime somewhere you are going to be dealing with real issues that are affecting you or your loved ones. If it is a loved one and you fall apart who will help them?

 

[lgelb]

Read what you wrote: because of your anxiety, they are getting you in for an EMG. Not because they're concerned. Because you are.

As Nikki said, you don't have reflexes that are abnormal enough to worry about. So what's left to worry about? Absolutely nothing.

That being the case, the best advice we can give is not to literally destroy your own life with unwarranted concerns.

 

[terryburke162]

Sorry for coming back and posting I just don't know what else to do at this point. The orthopedic's office called and pretty much told me to go back to my physio/PT and seek pain management. I guess given my images they felt it doesn't require surgery of my hip. I continue to twitch and have pains. The pains now are at times getting pretty severe nerve type pulsing.

The additional tests the als clinic ordered included bloodwork for high metals/cpk and cervical mri came back clean/negative. CPK was 150 within range but up from a few months ago when it was 100. Not sure if thats significant or not. I guess the only thing left is the emg with the big time specialist which isn't until November! I feel like my legs are shaky and all in all I feel like I can jump out of my skin if you touch me. Like the littlest touch or noise gets me jumpy. Nothing really left to test I guess.

 

[Clearwater AL]

Terry, re-read the post from Lgelb above, If there were any serious concerns of ALS
you would have got an EMG sooner, also said earlier. Most of what you just posted
above is sensory. That written so many times before here... points away even more
away from ALS.

Your EMG with the big time specialist... who and where?

You just don't know what else to do at this point. Get help with your Health Anxiety.

You're making this burden of worry worse about ALS rather than giving credit to our
very ALS knowledgeable members... to yourself.

The best thing you can do is log off this site until you have your EMG and do the
best you can to go on with other things in life. And... Dr. Google, for you, will only
fan the flame of Health Anxiety. Finally, it would also help those close to you...
because it will affect them too if it hasn't already.

Hope this finally gets you onto the path out of this cycle.

 

[terryburke162]

Mary Sedarus is the doctor I'm seeing. I will try to listen to you and everyone else here that has been so kind to reply to me. I can't seem to get a grip and I fear I may lose control. Apologies.