This Is MS Multiple Sclerosis Knowledge & Support Community

Hi all!

I'm writing on behalf of my wife who's been diagnosed with WG a bit over a year ago. She started with joint pain and swelling in her lower limbs, and a possibly related ear infection although not for sure.

She's been doing quite well on prednisone lowering the dose and Imuran. She got diagnosed very early so the doctor decided for a milder approach.

A few weeks ago a few things happened at once. She lowered her prednisone from 5mg to 2,5mg, she was under heavy psychological stress due to some family problems. She started feeling pain behind her left eye, quite intense. After a few days on-off she lost sensation on her palate for a few hours and the next day she lost vision on her eye.

After a prednisone shock she got alright again, but now the doctor is suspecting it could be something different to WG, that is MS.

I'm by no means an expert but from what I could gather her case is not very MS-like (she didn't have any of the other symptoms described for MS), and even I fould on a WG forum a very similar case involving the eye (but not the sensitivity loss). My bet is that, if anything other than WG, could be a different myelin degenerating disease (I don't have links handy right now, but I read about a few that would fit a bit better). Also, though not even conclusive for WG, she tested C-Anca positive.

What are the community's thoughts about this?
Thanks in advance!

hrnnwife wrote:I'm writing on behalf of my wife who's been diagnosed with WG a bit over a year ago. She started with joint pain and swelling in her lower limbs, and a possibly related ear infection although not for sure.

She's been doing quite well on prednisone lowering the dose and Imuran. She got diagnosed very early so the doctor decided for a milder approach.

A few weeks ago a few things happened at once. She lowered her prednisone from 5mg to 2,5mg, she was under heavy psychological stress due to some family problems. She started feeling pain behind her left eye, quite intense. After a few days on-off she lost sensation on her palate for a few hours and the next day she lost vision on her eye.

After a prednisone shock she got alright again, but now the doctor is suspecting it could be something different to WG, that is MS.

I'm by no means an expert but from what I could gather her case is not very MS-like (she didn't have any of the other symptoms described for MS), and even I fould on a WG forum a very similar case involving the eye (but not the sensitivity loss). My bet is that, if anything other than WG, could be a different myelin degenerating disease (I don't have links handy right now, but I read about a few that would fit a bit better). Also, though not even conclusive for WG, she tested C-Anca positive.

What are the community's thoughts about this?

Welcome to ThisIsMS, hrnnwife. These are my thoughts, not the general thoughts of this community.

I am not acquainted with Wegener's Granulomatosis (WG), except through cursory reading at the Mayo Clinic website. The few, nonspecific symptoms that you list are consistent with a vitamin B12 deficiency, among other conditions. I hope she has been thoroughly tested for this B12 possibility. A serum B12 test alone is not adequate to determine a deficiency. Initial testing for a deficiency in the blood usually includes a serum folate test, a serum homocysteine test, and a serum methylmalonic acid, as well. Additional testing could be done to rule out a B12 deficiency in the tissues. Most of the body's B12 is stored in the liver.

Any person at any age can develop a B12 deficiency. It is estimated that 40% of the US population has a B12 deficiency; for that reason I think B12 deficiency testing should become routine for patients presenting with myriad symptoms. Until it becomes routine, patients must request it specifically. A B12 deficiency can manifest with vascular symptoms, as well as neurological, psychological, and many other areas one would not logically expect. Many medications block the absorption of vitamin B12 and make a deficiency worse.

I encourage you to read through the following thread: http://www.thisisms.com/forum/natural-a ... 24857.html

I also urge you to read the book, Could It Be B12? An Epidemic of Misdiagnoses by Sally M. Pacholok, RN, BSN, and Jeffrey J. Stuart, D.O. (This may be available at your library.). These authors suggest that the B12 level should be at 1000 pg/mL or more if a patient presents with neurologic symptoms: http://b12awareness.org/could-it-be-b12 ... diagnoses/