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Aug 1, 2018 · Parsonage turner syndrome * in Brain & Nervous System

After a year and a half of thinking my husband had brachial plexus syndrome; he was diagnosed with sweat gland carcinoma in May. Make sure your doctor's check for everything & anything…..do not get focused on just one thing.

He is now undergoing radiation and chemotherapy treatments at Moffitt Cancer Center in Tampa, FL. What a great facility and we are pleased with his progress so far.

I pray each and everyday for all that are affected and touched by cancer and other devastating diseases. All we can say is NEGU – Never Ever Give Up!!

Feb 22, 2018 · Parsonage turner syndrome * in Brain & Nervous System

PTS is very painful for my husband and he has lost use of him right arm/hand. But, it is unusual for women to be diagnosed with PTS.
We have found all doctors we have consulted to be baffled and do not offer much in the way of treatment; just be patient, it takes time. One neurologist even mentioned a period of 3-4 years
I've found it difficult to take any further action at this time, as my husband developed blood clots is his arm and getting rid of them is our top priority right now.
Has anyone thought of stem cell therapy? Our prayers & thoughts are with you all.

Feb 9, 2018 · Parsonage turner syndrome * in Brain & Nervous System

Thank you for your input; it never entered our minds to check with a case worker at our insurance company. I will try that avenue and see where it takes us.

Feb 9, 2018 · Parsonage turner syndrome * in Brain & Nervous System

Thank you, Colleen. No, our local hematologist is close to the house and our local hospital, where the ultrasound will be done, is only a few blocks from our house. I am anxious to see what the test determines and hopefully, it will be good news. Still waiting for the swelling in Marks arm to decrease so we can resume PT and OT.

Feb 6, 2018 · Parsonage turner syndrome * in Brain & Nervous System

Had another appointment at USF last week and my husband was in such severe pain, he could not make the drive.
The doctor told me it was the worse case of idiopathic Brachial Plexopothy she has ever seen and she could offer nothing more. She wants us to see another neurologist to see if he thinks a spinal tap may show something. Only problem being his first available appointment is July 5th. Doctor said she would see if she could get that moved up. She also mentioned, long term it could take 3-4 years to for Parsonage-Turner Syndrome to dissipate. Not very hopeful news.
Also, due to blood clots, he cannot do OT or PT and cannot use compression sleeve at this time. Have appointment for a new ultrasound on February 27th to check status of the clots.
Very disheartening at this point but we will never give up!!

Jan 18, 2018 · Parsonage turner syndrome * in Brain & Nervous System

Thank you for your information regarding the Thymoma. Mark has had numerous MRI’s and CAT scans and nothing shows any tumors or suspicious shadows, etc.
As a result of inactivity, he has developed blood clots in his arm and is now on Eliquis (blood thinner). Do to the swelling in his arm and hand, PT is not an option at this time. But he does daily exercises to maintain some ROM in his right arm. We go for a new ultrasound end of February to check on the clots.
Also working with a pain management doctor to contain the pain. A once a month visit to renew prescriptions.
It’s just SO frustrating to have no known cause, no diagnostic testing, no definite timeline for it to run its course or how complete a person’s recovery may be.
I appreciate finding this Group and am sure we can learn a lot and hopefully, help someone else.

Jan 18, 2018 · Parsonage turner syndrome * in Brain & Nervous System

No, she did not even mention any specialists in the area. She referred to another doctor at USF for a second opinion – his first available appointment is July 5th. Can you recommend someone in our area? Please and Thank You.