Aa
Aa
A
A
A
Close
Avatar universal

It started as PACNS 3 years ago, and there's always something new

After having had every test in the book, I was diagnosed with PACNS almost 3 years ago, and the course has been unremitting. The original presentation was headache (not thunderclap) loss of executive function and memory, visual disturbances, 7 strokes 9ischemic) and a drop of at least 40 !Q points on neuropsyche testing. I have tried both MTX and AZA, but both make me violently ill. I'm back to the CTX -150 mg/day,now, and it seems to be finally keeping the brain fog away. I did nothing for the deadaches, and I am now taking divaloprox for them. This is helping too.  I am also on verapamil, prednisone,avapro, vit B-12, vit-D, calcium, cymbalta, plavix, and ambien. I'm a walking grugstore  I have recently develped Hoener's Syndrome, choking on liquids, a chronic cough, fecal urgency, and regurgitation. I fel as though I will drown if I lay flat.  My neurologist says he just doesn;t know anymore. my symptoms are so scattered. I'm due to have a barium swallow sooner or later, but what else could be going on? is all this related? please help. Any advice would be appreciated.
2 Responses
Sort by: Helpful Oldest Newest
Avatar universal
MEDICAL PROFESSIONAL
Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with your doctor.

Without the ability to examine you and obtain a history, I can not tell you what the exact cause of your symptoms is. However I will try to provide you with some useful information.

As you may know, PACNS is an inflammation of the blood vessels of the brain. Immunosuppressant medications such as MTX and AZA and CTX are used to suppress the inflammation. Associated with this condition is as you mention and increased risk of stroke, for which blood thinners such as plavix are needed, and because it affects the brain, secondary effects such as depression or pain may occur, necessitating polypharmacy (multiple medications).

Some of your symptoms such as your Horner's syndrome and your problems taking in liquids could be related to your PACNS. Horner's syndrome results from damage to a specific type of nerve called the sympathetic nerves, this could be due to a brainstem stroke or damage to the nerves in the neck or upper chest. Swallowing difficulties could occur if there is a stroke in the brainstem or other brain areas as well, or damage to the nerves involved in swallowing. However, swallowing problems also occur less commonly with problems with esophageal motility. A swallowing evaluation is an important step in ensuring you minimize your risk of choking/aspirating. I'm doubt that coughing would be related to your PACNS. Your bowel symptoms could be unrelated (could be due to a primary GI problem), or less likely could be due to involvement of your spinal cord with the PACNS.

In complex cases such as yours, evaluation at a teritary care center (such as a university hospital, a hospital affiliated with a large medical center) would be of benefit, so that you could be evaluated by a neurologist and rheumatologist with a lot of experience in this relatively rare disease.

Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck.
Helpful - 2
Avatar universal
Thank you for taking the time to answer my question.   Would a brainstem stroke always show up on a standard contrast/noncontrast MRI?  I had a repeat done in January,  no significant change from the previous ones, but this was before the current round of symptoms and the Horner's. I don't know that I can afford to come to Cleveland. Is there a tertiary care center in Texas? (Southwest Med. Ctr? )
Again, Thank you for your time.
Helpful - 0

You are reading content posted in the Neurology Forum

Popular Resources
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease