Looking for some insight

[lifeisgood]

Hello, First I can't believe I am actually posting on this thread. And I feel so very sad for those that have actually been diagnosed with disease and what incredible strength you all have. Any insight you can give me would be appreciated.

In a nutshell, I am 34 and was treated for metastatic thyroid cancer in 2010 with radioactive iodine. One year later, my muscles became progressively weak bilaterally but more on the left side. I am basically weaker on the left side from head to toe. My posture is poor and it is hard to hold myself up. My left leg, I believe is the weakest of all, but it is hard for me to really tell. When I work myself too hard, it feels like my throat swells and it makes it hard to swallow. And it is the littlest of things that wipe me out. This is very frustrating for me as I used to be so active. I still do as much for myself as I can. I can do the dishes, but often can not hold up the dishes to wash them. I can still type but often my left hand "pushes" the keys with nothing showing up. I can barely climb two stairs at my house and often become completely immobile with any change in incline of the ground. I have minor foot drop in my left foot as well. I was examined by a neurologist, who made me jog with him, which i couldn't do but rather dragged by left leg alongside me. And was having to use him to even keep myself from falling. To which he said my muscles were okay and said it was psychogenic. This disturbed me, especially when he put in his report that I could run well with assistance. I felt he totally misrepresented me. It was very disheartening. Prior to that I saw a neuro whose full workup showed extreme muscle weakness, so I feel at a loss. I did have an emg which showed decreased amplitude in the motor peroneal nerve. I know that when they did the emg they couldn't find a quiet muscle and moved to my back stabbing 5 times before they found a quiet muscle. I have had my thryoid and all electrolytes checked which has come out ok. I have had an mri which has come out ok. I Just don't know where to go from here. I am currently doing physical therapy, which shows extreme muscle weakness, and leaves me having to sleep for 2 days from extreme fatigue. As I type this my left fingers aren't cooperating. So, I guess this will be it for now. I appreciate any insight. Thank you so much

 

[trfogey]

What did the first neuro you saw -- the one that found the "extreme muscle weakness" say was wrong with you? Which doctor prescribed the physical therapy? And where did your thyroid cancer metastasize to?

And, for the record, the symptoms that you've listed here don't sound coherent, much less sounding like ALS.

 

[Alyoop]

Have never come across a neurologist who would " jog" with the patient. They can see all they need from a short walk across the room and good clinical examination. Sorry but it's a rather weird post.

 

[lifeisgood]

Thank you for your quick reply. To answer your questions: my thyroid cancer had spread to two of 5 lymph nodes removed. I went to a neuromuscular specialist in california one year after the radioactive iodine therapy. She noted weakness throught with more weakness on left side. She gave me a preliminary diagnosis of MG, and started me on mestinon which caused slurring of speech. Even though the blood test was negative, she was convinced it was that because a year ago i could still walk longer distances with use of a cane. So she put me on prednisone which only made me weaker. Then i moved to missouri.I continued to take it until i was to wean myself off hoping that my weakness would get better. But it didn't. So i went to the new neuro to try to figure out what was going on. She was the one who by this time had said extreme weakness and referred me to another neuro. She had a brain mri done and requested a full spinal mri, which i hvnt gotten done due to insurance issues. After seeing the neuro she referred me to, i went back to her and i suggested physical therapy b/c up to that point she had not given me the okay. But now she has. So that is where im at with all this. My pt is basic core exercises which are extremely hard for me to do. I used to bicep curl 10 lbs and now curl 2 lbs. I can't do more than 5 leg extensions without the muscle shaking and failing. Shifting my weight is difficult, sitting on the exercise ball for 5 minutes is extremely difficult tho gettin easier. My balance and walking ability is compromised. I am hoping to see some good results from the pt soon!

 

[brooksea]

What do you mean, your neuro "made me jog with him?"

 

[lifeisgood]

Alyoop, i agree it is rather weird but that is what happened. He had me walk and then said let's jog. I knew that I couldn't but trusted there was a reason so i agreed. I linked my arm with his and jogged about 15 ft down hallway and back. It was by far the hardest thing I had had to do. I couldnt hold myself upright but was leaning a lot on him. I was out of breath, like i said while i tried to jog normal, it was impossible to do so. My left leg was crumpled and tucked in next to my right leg. It was all very strange to me as well.

 

[lovedbygoldens]

If you have ALS, the type of PT you are doing is going to be worse on your body. If you are still in MO, get to KU Med Center and their ALS clinic for a proper evaluation and accurate diagnosis. I beg you to be seen by someone who knows what they are doing! Dr. April McVey would be my recommendation at KUMC ALS Clinic.

 

[laurel]

Sounds like you need to pursue the MG diagnosis as the weakness symptoms may fit. Good luck.
Laurel

 

[lifeisgood]

I have continued to think about the MG possibility and would like the proper rns testing. My calf muscle has significant wasting. As well as my inner thigh. It is as though I have forgotten how to walk properly b/c my calves are not strong enough to do what they should. I guess it is like a muscle memory kind of thing. So my pt is teaching me how to walk properly which so far has been unsuccessful. It is just very frustrating when your body stops doing things it used to do naturally. But i press on...

 

[LizT]

If you already have muscle atrophy and have had an EMG, ALS wouldve been picked up if thats what was causing your problems. Have any of the Neuros mentioned ALS or did you get G o o G l e happy?

 

[lifeisgood]

Good point. Thank you for that

 

[lifeisgood]

I find that the internet is a great resource for knowledge when used with discernment. I have never used it to diagnose myself; however, i have used it to point me in the right direction at times.

 

[Alyoop]

Have you talked to your neurologist about the side effects of the thyroid treatment?just a thought.
Maybe you have a paraneoplastic syndrome? Have they checked that your cancer has not returned?

 

[jb63]

depending on the severity of the thyroid disease you could have developed thyriod myocitis even while adjusting replacement meds.

 

[trfogey]

I find that the internet is a great resource for knowledge when used with discernment. I have never used it to diagnose myself; however, i have used it to point me in the right direction at times.

If you are using the 'Net to decide what type of doctor treats your particular condition or what online forum would be the best to get information about your condition (also known as "pointing yourself in the right direction"), you are diagnosing yourself.

The discerning thing to do would be to stop trying to outguess your doctors.