Discussions By Condition: I cannot get a diagnosis.

I need help-Been misdiagnosed for years!

Posted In: I cannot get a diagnosis. 7 Replies
  • Posted By: stillhere
  • January 7, 2009
  • 07:40 AM

I have a long story going on for years. I have been repeatedly told by different medical people "you should be on House". Don't know if that means they know something is wrong or they think I am crazy. Could someone clarify so I know if I should be offended? :)
I had something happen to my body when I gave birth to my daughter 9 years ago. I believe in my heart I have a virus of some kind (along with many other problems the doctors found while trying to help). This virus comes and goes and wreaks havoc on my body. I have always suffered migraines but they never went away after the birth and 3 years later something was making my face and scalp have bruised like areas. I then got sores on my face and appeared to my employees as if I had a stroke. I went to a dermotologist after getting a negative herpe result from a culture of the sores on my face. They were in a straight line from the bridge of my nose down my chin, neck and to my shoulder blade. My face looked numb and the pain was horrible. They decided it was shingles. A few months later, my vision became distorted and I was unable to mentally track. Major photosensitivity (sores still there flaring up as they saw fit) and it lasted 6 months. As it phased out, it seemed my vision problems and mental tracking ability correlated with my cycle and if I drank alcohol and I finally felt...better (duration 02/02 - 08/02)-I was told vision problems were ocular migraines for six months! The sores were part of it and stress was the root. As time went on I thought I had gotten past it but it took a toll on my finances, life etc. It hit again in June of 04. I told a friend I was having these vision problems again. In July a lump appeared in my breast that seemed related somehow and I was struggling with this monster again. Then Aug. 2004 I tapped out and went to the ER. This whole time having head pain that was now excruciating. Nothing touched the pain. Diagnosis after 4 day stay, chronic ocular and cluster migraines. I was able to track mentally a bit better this time but vision was distorted, (I have 20/20 vision normally) light sensitivity, severe pain in head. Somewhere in there I had a two year cough with awful stuff coming up and I mean the kind where it gives you a headache from coughing. I thought maybe I had been poisoned (now that I mention it, that was the first thing I said on Feb. 13, 02 when I realized in a meeting I had something wrong. That morning my eyes were so swollen I had to put frozen spoons on them to be presentable!) or was being exposed to a toxin somehow.
There is a lot more to this saga and sorry for the lengthy post but I am having another episode. I quit going to the doctors about a year ago since it was like a second job and I was feeling better and needed to work. Well I got one of those sores, just one last May. It finally went away in December but in October, that one sore became several. My mental tracking is ok. My vision has been ok. My migraines are controlled with medication so that is bearable. I have acute fatigue and the sores and all over unwell feeling.
I am convinced these sores are in the wart family and I am convinced they are in the facial nerve path as shingles presents and I am convinced this is why my vision is involved but I have no idea how to validate this or disqualify it. Can anyone here help me? Blood work shows wonderfully back in 2004 and always. I now have gastro problems which are not able to be figured out. They want to do decompression surgery on the Chiari I with a 50/50 chance of symptom relief and decompression surgery for a mechanical problem with my sphyncter of odie (sp?) for a dilation of biliary tree from no known cause. ???? Maybe I have a bunch wrong with me but I was in good health, athletic lively person with occasional migraines prior to this. I have deteriorated and don't know what happened....'
Again I am sorry for the long post. It is way overdue.
I will answer any questions and would gladly hear any input.
Thank you.

Reply Flag this Discussion

7 Replies:

Thanks! A moderator will review your post and it will be live within the next 24 hours.