Undiagnosed Purgatory

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New Member

Date Joined Feb 2009
Total Posts : 2
   Posted 2/22/2009 8:48 PM (GMT -6)   
Any advice would be greatly appreciated.

I have a long history of undiagnosed symptoms, but I'll begin in 2005. After having palpitations and rapid heart rate I was sent to a cardiologist who did the appropriate testing and dx benign ventricular tachycardia. Not surprisingly, in the time it took to get this answer I also starting having panic attacks brought on after the physical palpitations. Who wouldn't? I take Topral and Zoloft (both in minimum doses) and this controls the palps; thus no more panic attacks.

In February 2006, I was experiencing extreme fatigue, aching all over, a feeling of squeezing around my thighs, numbness and tingling from elbows down and knees down etc. My PCP suspected MS and send me for an MRI of the brain and cervical spine. A lesion was found on the brain. I went to a neurologist who said the lesion was ischemic and the tingling was from hyperventilating; i.e. panic attacks. My PCP it made sense to remove the panic attack issue from the equation; so I went to therapy for several months and used xanax when needed. I still have xanax in my purse; but I haven't needed it for more than a year even with all the weird symptoms I still experience.

Late summer 2007, I went through about 8 weeks with severe pain that started just below my shoulder blades and came around to the front under my breasts. PCP thought it was pulled muscles and sent me to a chiro for treatment. It did not help. Eventually it subsided on its own.

In February 2008, the fatigue was so debilitating along with body aches that my PCP sent blood work which showed almost non-existent WBC. I went to an hemotologist right away who did more blood work that showed hemolytic anemia. Then more blood work that confirmed it was not leukemia. Human parvo showed positive for past infection. Hemolytic anemia resolved on its own.

Three week ago I went to my PCP for regular appt. (med refill) and when she asked what's been going on, I told her buzzing in my feet, saliva going down the wrong way, electric shock feeling and dizziness when I move my head, extreme fatigue, hair falling out. Of course, she wanted to know why I hadn't called her. I guess I'm just used to living with all these weird things and am able to do my 20 hr per week job which I love and do the leisure things I enjoy. She immediately said we needed to get full round of blood work including thyroid and autoimmune stuff as well as a new MRI Brain and eye exam.

MRI is done: multiple small foci of bright signal seen in the periventricular deep white matter regions bilaterally.....demyelinating plaques cannot be excluded.

Don't have blood results and eye exam in on 2/27.

What should be next? I had one lesion; now I have multiple. Should I ask for thoracic and cervical MRI? Should I ask for VEP?

It seems to me that I meet the criteria for MS dx demonstrating dissemination in time and space. Nobody wants to have MS. I certainly don't, but it just seems like the reality of it. I am afraid the neurologist will make me feel like I'm an MS wannabe.


Forum Moderator

Date Joined Jan 2007
Total Posts : 3568
   Posted 2/22/2009 9:07 PM (GMT -6)   
What does your PCP have to say about all of this? He/She can diagnose you. It seems to me you demonstrated dissemination of time and space as well, but I am not a doctor. If you are unhappy with your diagnosis or the explanation of what you do have, you can always go for a second or third opinion. Please know that getting an MS diagnosis is very difficult. Try to be patient. You do have some symptoms that are not at all MSish. Hair falling out, and anemia/extremely low WBC are not MS. You could have one of the many MS mimics. You may want to ask for evoked potentials and a lumbar puncture. Those can be helpful tests.
Gretchen       co-moderator MS board       diagnosed with MS July 2006
I have no lesions on my soul and so I will live with no limits.

New Member

Date Joined Feb 2009
Total Posts : 2
   Posted 2/28/2009 8:03 PM (GMT -6)   

I had to have the blood work redone because the first sample was somehow damaged; so I don't have the results yet. I saw the opthamologist yesterday and there's no evidence of ON. I see my PCP again on 3/6 for the lab results and I guess we'll decide what to do next.

I'll keep you posted.
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