I feel like I'm stuck in limbo. Any advice would be appreciated

[TommyK]

Hello,

Before I get started, I want to thank all the PALS and the caretakers for answering these questions. I am a 25 year old male. I do not have a history of illness, and I also do not smoke/drink. I was in good shape 6’1 175lb, and exercised regularly before it all started.

It all began with an acute back pain that started in January. I did not think too much of it until I woke up one night because of this pain in my buttocks, which felt like a really bad muscle spasm. I also started having these painful muscle spasm in my upper back and shoulder. This is when I decided to see my primary physician. He then referred me to a orthopedist/neurologist, and I was also noted that I have lost about 10 lbs. Since then I have started eating more thinking maybe my immune system was off from this unknown weight loss.. Around this time, I started having these twitches in my back/shoulder/neck but I didn’t think too much of it.

I saw an orthopedist mid February and he told me it can be radiculopathy. I was told to do physical therapy, but things didn’t get better. The twitching became somewhat bodywide but more noticeable in my stomach and my buttocks. This is when I got a little more concerned. When I finally saw a neurologist in early March, I gave him a list of symptoms that I experienced. I also told him that I am concerned that if this can be MS or some kind of MND. He laughed at my concerns and told me there was no sign of MS and MND after checking my reflexes . He told me it’s most likely anxiety. I guess this is my arrogance but I was surprised to hear that because I didn’t have any anxiety issues in the past and thought he was going to run some tests like EMG, MRI or some kind of blood test. I decided to trust my doc and proceeded with additional physical therapy. He also said I can look into a rheumatologist.

Two weeks after I saw my neurologist, I start having these hip spasms while I’m walking, and the weakness in my buttocks became more apparent. I tried not to think too much of it but I notice that my pants are getting very loose around my buttocks. I called my neurologist and asked if we can run some additional tests. He thought it was unnecessary, but decides to do so so since I insisted. He ordered an MRI of lumbar with no contrast and an EMG/NCV. The EMG/NCV was conducted by a different neurologist at a different hospital, and when I told him about other body parts that I feel are affected (neck and face). He then told me that he is only testing of lumbar/BLE since that is what my neurologist ordered.

This Friday I got my results back and the MRI and EMG are both normal. Now I am very confused. Am I really going crazy? Is anxiety really causing all of this? If my buttocks is twitching and atrophying, would it be picked up on the EMG/NCV test of lumbar/BLE. If not, why did my neurologist only order an emg of lumbar/BLE? I am just really frustrated from this whole process. I know it’s only been about 4 months but it’s been a torture mentally and physically. The neurologist doesn’t think it’s a neurological problem, and the orthopedist thinks it’s a neurological problem. Once again, this is very arrogant for me to say but I really feel like I am not being heard. I would appreciate any advice and thank you for listening.

 

[lgelb]

Hi, Tommy, FYI, we say "caregiver," not "caretaker."

A couple of questions for you.

Have you actually lost weight since the 10lb noted in January?

Has your PT noticed deterioration? What does the PT think the issue is?

A couple of answers:

Yes, if your buttocks are an issue, the EMG was in the right place.

It does not matter that your neck and face were not tested. If there is nerve dysfunction, there is nerve dysfunction.

Advice:
I'd go to an internist for a review of systems and blood work to rule out systemic disease.

Best,
Laurie

 

[TommyK]

Hi Laurie,

Thank you for the response and my apologies on the terminology.

Yes, the loss of 10lb was first noted when I was weighed at my primary doctor's office in January.
My body weight has been pretty consistent since college so that was surprising to find out. I was home for the holidays in December so I was well rested and worked out/ate well. I have been eating a lot more since then because I thought my immune system was thrown off and thought eating more will help.

My body weight is now close to my usual weight but I'm sure my body is less muscular now because I haven't been doing strenuous weight training/running ever since I started PT for my back in February. I was mostly walking and doing some bikes during my PT.

When I started my PT, my PT did initially notice some spasticity? around my scapula and my shoulder/neck, and I have been doing the exercises she has recommended since then. The spasticity is what initially got me worried about MS. It still does get stiff but it's not as bad as when it all started. She also noticed that my right trap was a lot weaker than my left side. I am right handed so I thought it was weird but I wasn't too concerned since I hear it's somewhat common to have an imbalance. She also did note the tightness of my right hip and I have been doing stretches since then.

Now back to emg, as you can tell I obviously have no idea on how this thing works. All I know is that the neurologist shocked my lower back and my legs but didn't shock my butt. That's why I wasn't sure if this was the right test and if any issues of my butt would be picked up. Same thing for the NCV. No needle on my butt.

There are few other concerns that I'm not even trying to worry about. When I spread my hands I get these twitches on my fingers. I can see my neck twitching with my pulse, and I feel my body shaking with my pulse.

I guess there's not a lot that I can do at this point. I will definitely try to look for an internist and really see what's going on.

Thank you for your advice.

 

[lgelb]

Glad to hear you are headed to an internist.

The nerve tests are not conducted on the buttocks in part because those muscles are not as good at moving on command/predictably overall as is needed for those tests. They are also more difficult to access.

Shoulder spasticity is not uncommon, and, as you have noted, traps are often different from left to right. The point of that question is that PTs certainly are empowered to report findings of concern to the doc who ordered PT. It doesn't appear that your PT is unduly concerned at this point, which is excellent news.

While you wait for the internist appointment, I would try to live [gradually working your way back up, of course] pre-PT in terms of diet and exercise, which, if issues arise, will be more data to help in any diagnostic process. Eating more and exercising less isn't likely to help you at this point.

Let us know how you get on, after the appointment.

 

[TommyK]

I went to see an internist, and he ordered the regular blood test and few rheumatological conditions but they all came out to be normal.

The atrophy of my lower back along the spine is very visible and now I'm really not sure what's causing all these issues.

I've also started to experience some pain between the ligament connecting my chest and my arm, and my hands are cramping up more frequently. The earliest appointment with the rheumatologist is in September.

Any tips on what else I can be looking for?

Thank you

 

[KarenNWendyn]

It’s hard for us to say what else can be going on without doing a careful history and physical exam, though I would say ALS is off the table with the normal EMG. If you don’t get answers from the doctors you’re seeing, another type of doctor to consider seeing would be a physical medicine specialist (physiatrist).