Confusing Case

[keane]

I've only posted a few times, but thought some might find my story interesting. Currently, I'm 43 and experiencing extreme weakness of my left arm. I have minor weakness on other extremeties, with severe cramps and minor twitching of the larger muscles. Years ago, I began noticing wekaness in the legs and ultimately went to a university medical hospital in Georgia, where a biopsy was performed. The physician had a rough bedside manner and basically told us everything was okay. I learned to adapt to the problem and it did not get worse. I also began having severe problems with ankyosing spondylitis and multiple fusion activity in my back and ribs.
On my last visit with the current problem, the specialist here in another part of the US said he reviewed the previous biopsy conclusion, plus thousands of dollars worth of tests that ruled out MS, other diseases, and compressed nerves, so he suspected PLS. On a later visit he informed me that he had studied the entire biopsy report and found that the previous facility did not mention that they found muscle cell lipid droplets common to a rare muscle disease. He felt that the earlier doctor did not consider the finding because all of my limbs were not impacted equally, plus there was no evidence my heart was weak (this myopathy affects the cardiac muscles).
In a nutshell, the current doctor states that the left arm-dominant symptoms are not consistant with that myopathy. Reflexes are exaggerated like PLS, but only on one leg and the other arm, which is atypical. He wants me to attend the MAYO clinic or others, undergo cardiac testing, and refrain from aerobic activities. Since I previously lifted weights and have very strong muscles, he wants me to attend physical therapy weekly to clinically document muscle size and perform rannge of motion exercise in a supervised setting. He thinks it may take a year or more to diagnose.
Thanks again for the support on this site. By the way, I've found that many large corporations, like the one I work for, will match employee donations to foundations such as those for ALS research - the employee just has to ask.

 

[Zaphoon]

Keane,

Looks like you've been dealing with your troubles for quite a while now and diagnosis could still be a year away. At least you have had some undesirable things ruled out. I am told that a PLS diagnosis can take quite a while (so many things have to be ruled out).

Please feel free to communicate as frequently as you'd like.

Zaphoon

 

[awieleba]

Good luck with everything!

 

[lovelily]

Keane, God bless you on this journey~

 

[planningguy]

Can't add much other than echoing the best wishes.

Take care,

Robert

 

[Al]

Hang in there. These things take time sometimes.

AL.

 

[keane]

Thanks for the kind words of encouragement. During the 1st physical therapy session, I was able to grip 130 pounds with the good hand and about 12 pounds with my weak (left) hand. The upper arm and shoulder were also significantly weaker than the right. The "oddest" finding to me was realizing that I could not pick up coins that were lying flat on a table. It seemed that she was using some sort of trick coins, but I had the same results at home. Dexterity tests were abnormal with both hands, with the weak hand worse. The physical therapist seemed appalled that such weakness could occur so quickly without some sort of diagnosis other than "just wait".

 

[awieleba]

Yes, I can relate. I am doing ok but when I tried PT, my thereapist thought I was abnormally weak for an 'apparently' healthy 36 yr old women. My grip stength was 40's in one hand and low 50's in other, you had 130? wow! I did not go back as she confirmed that I was infact weaker and I felt that untill I know what is causing it that I am active enough with 3 young kids.

When you were diagnosed with ankloysing spod. did you test + for the hla b27 test? that is the test assoc with 5 different types of it. I did, they x- ray'd my whole back and si joints but only found mild scoliosis and osteo arthritis but thought I may have had rieters after I gave birth. Just wondering. I thought is wierd with that test because only 8% of population will test + for it and out of that %80-90 will have one of those types of arthritis.

Take care and I wish you luck, I know that AS is alot to deal with alone. could any of the fusion of the spine causing a nerve to be pinched?

 

[keane]

I tested positive for the HLA 27 antibody prior to the AS diagnosis. Initially, my rheumatologist relied on a very strict definition and would not give a definitive diagnosis, even though my sternum and several vertebrae had fusion activity. My father and his father also had AS. She wanted to see fusion of the SI joint. Later, I transferred to another rheumatologist who made the diagnosis. The SI joint fused shortly thereafter.

I had two MRI's to confirm that my current problem was not due to nerve compression. I've had this problem in the past and the difference this time is the absence of sensory problems or numbness. According to the Neurologist during the EMG, he could tell that it was not nerve compression, plus he even told me to quit sleeping on my left side so much because of a minor elbow area problem. I do not know the terminology, but the EMG was not normal, but lack of progression to other areas made the neurologist hesitate to suspect ALS or PLS. My internist is trying to get me into the Mayo.

 

[awieleba]

good luck at mayo and with getting answers!