Discussions By Condition: I cannot get a diagnosis.

Help - I can't fix "me" - 1st Post

Posted In: I cannot get a diagnosis. 6 Replies
  • Posted By: Beachmom
  • March 31, 2007
  • 04:04 PM

Thank you in advance for taking the time to read this posting. I am age 42 W/F, Wife, mother, grandmother and I work FT. For the most part Happy, normal, healthy life with the exception of the past couple of years things seem to be heading out of control and I nor the Dr.'s can fit all the diagnosis' together to form one problem. I have always been blessed with the abilty to "Fix" anything and everything or at least channel it to someone that could. I am so frustrated I don't know what to do anymore. In the past 2 years I have been diagnosed with the following: Optic Nueritis, Marcus Gunn Pupil, Dry Eye Keratitis, Headaches, Some type of Nasal Rhinitis (When I get too warm), Osteoarthritis of the spine and wrist's, Firbomyalia, mild Sleep Apnea with moderate Hypersomnia. Also, in the mid 90's I was diagnosed with Mitral Valve Prolapse with Mitral regurgitation and PSVT as well as sensorineural hearing loss that has now progressed to the point of 60-70 base. (90 is Pround). Had a hysterectomy in 1999 and bladder surgery last year. Since last summer I now go every 4-6 months for mammo's as they have found 6 calcifications they are unsure of in my left breast. I'm sure some of the mental state of confusion could be the stress of it all, but it seems to come in cycles. I still have strange sensations (Pins & Needles), Spasms, Some Facial Numbness, oh my the list goes on. I can't fix this, the lord and I have had many long conversations. I don't understand. I have had many tests and things that have been ruled out are MS (didn't show up on MRI's). Rhumatoid Arthritis, (Test Not Positive), Lyme Disease (Test Not Positive), and a few others.(VEP, EEG, 3 MRI's, X-Rays, Blood Work. I know not all will fit together to form one puzzle, but come on, In todays medicine how can they not link some of these things together? Does anyone else out there have this craziness going on or know someone that does? Are there any answers? Please help~

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6 Replies:

  • ok ive worked for eye md.s for 14 yrs, so I know optic neruitis and MGunn pupil can be related.. How severe is your vision?? How long have you had the neruitis?? 1 eye or both??Dry eyes can be associated with many of the sinus meds you may be taking. Are you seeing an optomrist or ophthalmologist?? You should be seeing an ophthalmologist because they are medical doctors & optomrist only went to eye school.God Bless & best wishes...Kristie
    Anonymous 42789 Replies Flag this Response
  • Hi , One neg Lyme test certianly does not rule it out. The tests are not very accurate and are known for giving false negs. Many people who have been in your shoes for many yrs are just now finding out they have undx'd Lyme. Here is a good site to look around and see if it could be the problem for you. Best wishes. lymenet.org
    Anonymous 42789 Replies Flag this Response
  • Nuerologist 1st noticed what he called a flare of O.N. in 2/2006 after a VEP. Since 2004, the opthamologist had been using a diagnosis of Glaucoma suspect due to the size of my optic nerve and disc. Finally 10/2006 she sent me to a specialist (neuro-opthamoligist) he diagnosed as O.N. & Marcus Gunn Pupil. He said looking at the symptoms and my age his first thought would be MS. He pointed out the MRI is not suggestive of MS. He advised me to keep my appointments with my neurologist and call him if anything changes. My vision is 20/40 in both eyes. My disc sizes are .65 abnl (?) my visual fields are abnormal in both eyes but I do know my right eye gives me the most trouble trying to focus. At times it feels like it is loose in the socket, it's crazy I know. I have numbness around the right eye. Any other ideas? I keep a list of my meds with me to share with the Dr.'s. I will ask specifically next time about the nose spray and dry eye and see if we can do something diffferently there. I did check out the Lyme page you mentioned. Some of those things sounds very familiar. I intend on calling the primary Dr. 1st thing Monday. I am very interested in having additional testing for this. I saw the photos on the website. I was bitten by what I thought was a spider year before last. It made the rings. I didn't go to the Dr. at that time but continued to watch it in case there were signs of infection. It eventually lost the fever and the rings faded, never showed signs of infections. I never thought it could be lyme disease and have never questioned a neg. test. We'll see what happens now. Thank you both for input.
    Beachmom 5 Replies Flag this Response
  • My vision is 20/40 in both eyes. Visual Fields for both eyes are out of normal limits. The neuro 1st noticed what he called a flare of O.N. 2/2006 after a VEP test. My regular othamologist had given a diagnosis of glaucoma suspect due to the size of my optic nerve & disc for 2 years. Then she sent me to a neuropthamologist 10/2006. He said it was O.N. and also Marcus Gunn Pupil, the C/D ratio is .65 (I don't know what that means). He would have thought MS but the MRI is not suggestive of MS. He told me to keep the appts with my Neuro but I didn't have to come back to him unless there was a change. I do know that my right eye gives me the most trouble. Blurry, ache, loss of feeling around the right eye. I know it sounds strange but it's almost like at times it is loose in the socket. I will ask about the nose spray, perhaps we can do something differently for the dry eye. Any input you have is greatly appreciated. Any idea as to how long O.N lasts? Thanks for the info on Lyme. I reviewed the page. I had no idea there was any reason to doubt a negative test. I will call the Dr. Monday. The symptoms hit really close to home. A couple of years ago I had what I thought was a spider bite on my leg. After seeing the photo's, it could have been a tic. I had the slight ring, I was more watching for signs of infection in the event it was a poison spider. It eventually lost it's fever, never got infected, and eventually went away. I think is worth looking in to. Thanks again to both of you!!
    Beachmom 5 Replies Flag this Response
  • I failed to mention everything is dimmer in my right eye. I don't know why.
    Beachmom 5 Replies Flag this Response
  • I went today to see the primary Dr. asking if we could do the lyme disease test today. He said he didn't think it was necessary because of our area of the country. Lyme here is very rare. It didn't seem to bother him about what I thought was a spider bite, nor that during Huricanes Ivan and Katrina I was still volunteering for the SPCA. I must have been exposed to hundreds of pets during those times and up until last year when I finally had stop. For the past week or so my eye is blurring badly, I feel like I have the flu, just yucky. The primary Dr. did suggest I see the nuerologist again for further testing. He also stated he felt it was more likely to be MS instead of Lyme. So, here we go again, if they can't heal you, they will drive you insane!!!! Good luck to you all, there are a lot people here that really need our prayers!!! Hope you all find what you're looking for~
    Beachmom 5 Replies Flag this Response
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