Could I have Ms

[cathy229]

I have ankylosing spondylitis and I am on Enbrel.  Last Feb. I had chest pain  it felt like pleurosy.  I have had it before,  Cest xray normal so they treated me for reflux.  it did not help so they ordered a stress test (family history).I had a heart cath. for abnormal stress test.   Could not walk well, out of breath weak stutter and developed a tremor. The ER said it was vertigo and orthostatic hypotension because they could not find my blood pressure. I went to a neurologist a couple of months later and she said it was a stroke based on a clinical diagnosis.  First MRI showed one 5mm white matter lesion.  Second MRI showed nothing and the lesion was gone. I went for a second opinion (now a year later before I could get in).  I still have the fatigue, numbness in both feet, tremor kinetic and resting combo.  , stutter when tired, loss of balance , my legs give out on me left more than right, left leg swelling.(  the Er said  the swelling was because I was 50, wear and tear) feel faint at times.  My emg today was normal, blood tests are normal, and I was told they will watch the symptoms for a couple months.  I have been watching them for a year.    New Neuro does not think I ever had a stroke.  I am thinking maybe I should just stop taking the Enbrel and try to deal with it.  It sounds like ms symptoms to me. Any one have an idea?

[twopack]

OOne of our members posted a while back that she had learned at a seminar that the biologicals (or some of them) used to treat inflammatory types of arthritis can cause MS.

We investigated that on our own and found the best information on drugs *******.  Look up Enbrel then click on something like 'more side effects' or 'side effects for professionals'.  Look towards the end for 'Postmarketing Reports'.  You should see specific examples of the problems and outcomes encountered and reported for various body systems.

Postmarketing reports are symptoms reported by patients or doctors after a drug has cleared FDA hurdles and is in general use.  They may or may not end up being side effects associated with the drug but they are usually serious enough to take into consideration.  Some problems just don't show up until a new drug has been in use over a longer time period or is prescribed outside the strict regulation of clinical trials.

It did seem like the MS-type symptoms that started after the use of Biologicals were mimics rather than true MS.  It was less clear if the symptoms cleared after the biological was discontinued or if they merely stopped progressing.

Now, you also have a variety of symptoms that are common to many of our members.  They could be indicators of MS or other auto-immune diseases.  Since you are already seeing a rheumatologist I'd most definitely be making an appointment to talk this through with her.  She should be able to run some blood work to check for causes and well as guide you into interim treatment of the AS if you decide a trial off the Enbrel is the best route to start ruling out possibilities.

Please keep us in the loop about how this plays out for you.  We learn from each other here and you bring a unique combination of familiar symptoms in a not so familiar framework.

Odd facts (for what they are worth):
Lesions on MRI can appear and then disappear if the body is sufficiently able to repair damage to the myelin.  It doesn't mean there has been a complete repair - only that there is improvement.  There is a Health Page describing this.  It contains a Quixism (saying of our mentor), "Lesions come and lesions go but mostly they come."

I've had a bunch of your symptoms on a come and go basis that were originally thought to be cardiac but with a totally negative cardiac work-up.  They remain unexplained.  The leg swelling greater in one leg than the other has disappeared since I started on Prednisone for new inflammatory arthritis.  It might be thyroid related.  Nobody is committing yet.

You may want to investigate dysautonomia.  Some of your symptoms fit into the variety of conditions under that umbrella.  It's possible but probably not the most likely cause.  Still worth a look in your search.

I hope you can get this mystery unraveled soon so you can get back to feeling at least a little better.

Mary

[sllowe]

Hi Cathy,

Welcome to the forum. My thoughts are to not stop taking the Enbrel for the spondylitus unless discussed w/your treating doctor. That could have serious consequences to you and your condition. Have you discussed these current symptoms w/your treating doctor? I do not know all of side affects of the med, but the doctor should.

The problems you describe above sound to me that you follow up with a cardiologist is in order especially considering the hypotension, and the abnormal stress test. The ED docs should have recommended this follow up.

Though imaging revealed a lesion, not all lesions are demyelinating lesions from MS Those problems along with the swelling are not consistent with MS, although sometimes MSers experience these as secondary problems to the disease. And, not all MS is typical.

Many conditions and diseases have overlapping symptoms. So, while some of what you describe is experienced by MSers, they are also experienced by armfuls of folks with differential diagnoses. That's why we all live here so happily on this forum - we are made up of those w/out dx, those w/MS, and those w/differential dx. We simply understand :)

Regardless of all the potentials here w/what you have going on, it's going to take a very thorough doctor to sort it all out. I hope the one you have is going to dig through this for you.

I hope too we can help you map out some next steps.
Thanks for joining us!

-Shell

[gngr]

Did the doctor do a spinal tap to see about the protien in your spinal fluid. Sometimes it is so difficult to diagnose MS. So  many go undiagnosed which is sad. I was diagnosed with Devics Disease. Something like MS. but no lesions on the brain I do have three on my spine. Go get another opinion and keep searching. You seem to have some neuro difficulties and symptoms going on. I know it is hard when you don't feel right and Dr's keep thelling you there is nothing wrong, but it is your right to keep digging and getting medical care. Look up Devic's Syndrome that may be more of what your symptoms are pointing to.