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.

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7 Replies:

  • Hi Blaze I notice you ask often about the cellphone use. Have you had problems with this? I have been using a cellphone since the "big brick" times. I am in sales so I have cauliflower ear too!! I have heard many things about them affecting the brain. I will look at the link. I am not sure of the exact tests you are asking about so I will check but one blood test came back with high iron and nobody thought much about it. My immune system was probably pretty compromised when the original episode hit. My daughter was in day care and I was continually sick with things during that time. A variety of viruses and such. Thanks for the response.
    stillhere 14 Replies
    • January 8, 2009
    • 04:20 PM
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  • My advice is to ignore the"Blaze-spam.''
    richard wayne2b 1232 Replies
    • January 8, 2009
    • 08:49 PM
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  • Thank you! Need those time saving bits of advice. ;)
    stillhere 14 Replies
    • January 8, 2009
    • 09:06 PM
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  • . My migraines are controlled with medication so that is bearable. I have acute fatigue and the sores and all over unwell feeling. I now have gastro problems which are not able to be figured out. You said there was a lot more to your saga.. i'd like to hear about it cause it may help point to what may or may not be wrong with you. The gastro issues.. irritable bowel syndrome??? I do have a possible illness in mind but still not too sure whether to mention it at this point or not as i'd like to know more. Do you get sleeping issues.. eg hypersomina, insomina or reversed sleep cycle? Are you having memory issues and concentration issues? Does your fatigue and general unwell feeling or headaches, come in or get worst after you've exerted yourself in some way eg after physical exercise? When the issues have all worsened again.. can you pin point any possible triggers eg stressful events??? a time where a lot of mental exertion is going on?? or a lot more physical stuff going on in your life etc etc
    taniaaust1 2267 Replies
    • January 9, 2009
    • 01:12 PM
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  • Have you been tested for celiac disease? Migraines & sores as you describe them can be related to this. You can also get bruising from celiac due to vitamin K deficiniency related to not being able to absorb food properly. The bruises you describe may be a hint of other things as well. This is pretty long to go through, but try here: http://www.wrongdiagnosis.com/sym/easy_bruising.htm Has anyone looked at your genetics?
    aquila 1263 Replies
    • January 9, 2009
    • 05:35 PM
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  • Hi taniaaust1,I definitely relate it to over exercion and stress. so YES!I have never been diagnosed with irritable bowel. So ?I can start with my original best memories. In December 2001, I had two migraines within 2 weeks of each other. (migraine sufferer about once or twice per month prior and Imitrex would get them)The migraines I had this time came with slurring :eek: and throwing up. Went to the doctor (no head coverage, excluded as pre existing cond) probably end of January 02. Was given paxil and asked him why the pattern on the carpet was vibrating to me. He gave me altenolol ? a blood pressure med due to this being related to pressure on optical nerve. OK. Next came Feb 13, 2002 when I woke up feeling poisoned as my face was swollen and major light sensitivity and sick feeling. Progressed into inability to track simple instructions. My visual problems were making me crazy. Distorted vision is the best I can describe. (wild eyed) Suspected blood sugar. Blood work looked great! Threw out all meds and drank tons of water and massages for a week with no improvement. Vision with the painful bruised feelings on face and sores on scalp and face plus mind problem that tapered off over the next six months. In August 02, I started slowly being able to work and cope. I was very careful but if my cycle hit, it would get me 2-3 days of all above symptoms or if I drank alcohol. Then I thought I was in the clear. Until June of 2004. People who knew me, knew something terrible had happened. I am pretty sure before June I was catching up on what I was unable to do prior so overexercion. This episode actually made me lose ability to distinguish colors blue brown black green. The pain in my head was ridiculous. This was my 4 day stay in the hospital. I ended up having a spinal tap but they only checked for 'west nile' as I am in AZ. Just want to clarify, I don't go to the hospital! I was done.Let me know if you want more info. Yes on the sleep problems too. Used to sleep like a rock.Thank you for any input.....
    stillhere 14 Replies
    • January 9, 2009
    • 05:58 PM
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  • aquila,Just wanted to clarify, they were not actually black and blue. They were tender spots, following either sinus path, nerve path? Went to ENT for sinus clarification, nothing there except large sinus ducts? Went to dentist and had panoramic film with no obvious issues except TMJ. (I think the more they look the more things they will find but I don't feel they found the problem) I felt hit by something so I guess topical pain that would feel as if it were bruised. Painful to the touch and would heal like a bruise by slowly, over days, feeling less tender and smaller. Mainly on head and face (my friends would joke about my toddler, hitting me in the middle of the night) but did have it on that bone on top of my shoulder and chest, like on top of rib. Doctor did tell me he could feel heat coming from these tender areas. Felt something was happening under skin possibly?Thus I feel like something in the nerve path.Thanks for your input and I will look at Celiac Disease.
    stillhere 14 Replies
    • January 9, 2009
    • 06:14 PM
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