MS or ADEM, DOCTOR YOUR OPINION NEEDED!

[santana8]

Dear Doctor,
  I am a 41 year old female who until two years ago was  in good health. I had a medication change just after my 39th birthday. I was abruptly taken of of two medications without a taper, and put on another the next day to replace these meds. I was on Zoloft 100mg daily x 14 years, and Xanax .25mg daily x eight months. I was changed to Paroxrtine (generic Paxil).  Six weeks into this change I suddenley had vision disturbance in a store. I could see the prices but could not recognize what they were, kind of like looking at a different language. Over the next three weeks I had these symptoms in this orfer.
DISTORTED VISION
PHOTOPHOBIA
MENTAL STATUS CHANGES
ANOREXIA
VOMITING
DIAREAH
CHILLS
BACK PAIN
SHOOTING LIMB PAIN
LOWER ABDOMEN PAIN
NECK PAIN
A HYPER STATE
Got off Paroxetine
A DRUGGED FEELING
NUMB EYES
EVERYTHING LOOKED LIT UP
DYSLEXIA
CONFUSION
DEPRESSION(sevier)
ANXIETY(sevier)
TOTAL LIGHT INTOLERANCE
FLASHING AND FLICKERING LIGHTS
RAPID WIEGHT LOSS (40 pounds)
EYE PAIN AND PRESSURE
HEAD AND FACE PRESSURE
BLEPHARITIS
TEAR GLAND DISFUNCTION
DRY EYE
BLURRED VISION
MASKED VISION(like I was looking through a viel)
MISSING LETTERS WHILE READING
SORE PAINFUL EYES
DIMMED VISION
LOST COLOR VISION
VISUAL FIELD DEFECT(left inferior harmoneous quadrant defect)
Got back on Zoloft and xanax and all emotional symptoms stableized, but visiual and neurological symptoms remained.Went to three different Opthalmologist and they couldn't find anything wrong with my eyes. VA was 20/20 and optic nerve and  retina looked good. The last one done a visu al field defect test which showed the visual field defect. Sent To Neurologist and was sent to have an MRI and a VEP. MRI showed multiple white matter lesions mostly in the corpus collosum area. and the VEP was abnormal showing slowing in the left eye. First Neurologist dx was MS. He didn't do any blood test or a spinal tap so I got a second opinion. Second Neuro Done MRI with enhancement the lesions were unchanged. He also done bloodwork that was all negative He also done a spinal tap and a polyomerce chain reaction, both were negative.The spinal fluid showed now Obanding. Was sent to a neuro-Opthalmologist who said if I had ON it was  further back(retoubuloar neuritis).My regular neurologist said that I may have had ADEM. He has done repeat MRI's every six months for two years now. They all showed no new lesions,no enhancing lesions, and the origional lesions were unchanged. So for now I have a dx of ADEM unless I show hew lesions or another attack.I asked my neurologist if there would have been new lesions on Mri if this was MS. He said he would have expected to see something in this leghth of time, but it may still end up being MS, but he believes that it is ADEM because of the monophsic course of the illness. Does this all sound right? I have had no medication for this,but have continued to see improvement all of the symtoms all very slowly at one pace. The visual field defect seems to be shrinking.your opinion would ge greatly appreiated! Thank you
                                                     Santana8

[santana8]

BUMP OF ORIGIONAL MESSAGE.

[magickat]

I'm sorry you've gone through this. And I'm so sorry about the loss of your cousin -- that's tragic!

I have only one child and can't imagine caring for 3 boys with your symptoms and stresses. Good for you for having in there for them.

I can imagine it's exhausting trying to address the medication issue with doctors. Perhaps because they can't really determine definitively that the medication switched triggered your series of symptoms, they just shake their heads since there's nothing they can do about it? I know you want answers, but they just not be able to give you anything definitive on the original cause. So they focus on treating the results, you know?

For what it's worth, I had a doc tell me that I could switch from one SSRI to another without a true taper, and it went abysmally -- wretched nausea and other withdrawal symptoms that made me turn away from psychoactive meds for the next 6 months, at which point I tried again and found one that worked. I trusted the doctor, but anecdotally I've heard of plenty of people having trouble switching from one to another, under the rationale that the similar chemical makeup and activity would mean that withdrawal symptoms would be unlikely, and yet they still ended up with wacky symptoms. Wacky is one thing, though; what happened to you is extremely upsetting.

I'm not where you are (yet) -- I'm in the early stages of being tested for MS (one MRI down, more to go), and I'm already quite confused, as clearly neurological disorders are quite difficult to diagnose.

[santana8]

Thanks for reading my post. I have thought from the start that the medication change and the way it was done has something to do with this. I have argued this point to all my doctors and at first they all said no , its never been documented in the literature from these drugs. Eventhough I sent to the drug company myself and got the side effect sheet for Paroxetine and Zoloft and a striking amount of my symptoms and things that I've actually been diagnosed with are on the paroxetine list. A couple of  my doctors and I have 5 different doctors , a primary care, a neurologist, a neuro-opthalmologist, a opthalmologist,  a phsyciatrist, a ear/nose/ throat specialist, and a dermatoligist, ok so I have seven. No wonder I am worn out! Anyway some of them have made statements that made me think that they know that it had something to do with it, but no one will say that for sure as they say they can't proove it. My symptoms are all getting better but my vision may be perminatly  damaged. I haven't been able to drive a car in two years. I loved to drive because that is when I could take my three boys out to do things and I miss that so bad. But at least I am still alive. I had a 29 year old cousin who died five days ago from two major strokes that her doctors have documented that was caused by a change to a different birth control pill. She had a tubal and didn't need birth control, but they gave them to her to regulate her cycle. The OB doctor tried to give me birth control right after I had this attack for the same thing. I tore the percripion up and threw it away. I guess  you might say the paroxetine weaned me! My neurologist made the coment the other day that the medicaion was what started this whole mess, and then quickly changed his statement to , Well it may have contributed to it. Doctors are afraid to say these things , but I don't care after all that I've been through. I just want to know if that is what happened or do I have to worry myself  silly about having MS and the possibility of becoming  to diabled to finish raising my boys. They are 15, 12,and 7, and I live for them! I wish someone would consider this medication as a serious cause of this. I have always felt in my gutt that it had a lot to do with what happened to me, but I am exausted trying to proove it. Thanks again for listening!

Santana8

[magickat]

I know you're waiting for a doctor's opinion, and I am most certainly not one, but in the meantime, I just wanted to offer my sympathy for everything you've been going through, both the symptoms and the difficult process of diagnosis.

From a lay perspective (and as someone who has been on an SSRI for a long time), it sure seems striking that the symptoms first hit immediately after you switched to paroxetine (quite a coincidence, at the very least), and many of the post-paroxetine symptoms sound like classic SSRI withdrawal. I'm happy for you that you've seen continued improvement in your symptoms even without medication. I hope it keeps up. And I hope you get some useful and comforting information from a doctor as well.