Discussions By Condition: I cannot get a diagnosis.

Any help please...

Posted In: I cannot get a diagnosis. 5 Replies
  • Posted By: auntmonkey127
  • April 16, 2008
  • 09:05 PM

Almost three months ago I got sick. It started with a migraine (I have chronic migraines) but developed into flu like symptoms. The migraine didn't seem unusual because I often have a migraine right before any illness, even a cold. I went to the doctor when the symptoms worsened a few days later. They did some lab work that was inconclusive and said it was probably a bad virus. They wrote me a note to stay home from work and told me to go to the emergency room if I developed any pain or stiffness in my back or neck.
About one day later I woke up with just such a pain. The pain seemed to be centered down my spine and made it very difficult to move. I went to the emergency room where they did more lab work, which was normal, and diagnosed virally caused myalgias. I was told that it would be impossible to find out what type of virus had caused my symptoms, but that they should only last for about a week, and I should return to the ER if they didn't clear up on their own. I was prescribed Darvoset for pain.
More than a week later I returned to the ER because my symptoms had not diminished at all. This time the doctor ordered more lab work and a back xray which also came back normal. He listed my diagnosis as muscle strain and prescribed 800mg Ibuprofen, Valium and Vicodin. He advised that I follow up with my regular doctor.
It might be important to note that during this time the pain in my back was so severe that I had extreme difficulty getting around without assistance, and if I over-did things or got chilled I would have uncontrollable muscle spasms.
I made an appointment to follow up with my regular doctor. At that appointment she just reiterated what the first ER doctor had said and told me that the pain would go away with time.
By this time (almost three weeks later) the flu like aspect of my symptoms had faded.
I had a previously scheduled appointment with my neurologist for my migraines a few days later. She wanted me to go back on Lamictal, both for my migraines and for this back pain. I had used the Lamictal successfully before (to help prevent my migraines) and she assured me that it would work to treat the back pain as well. It is a five week course to start the Lamictal and I started right away. She also had me quit the Ibuprofen and the Valium, and cut the Vicodin back to only at night.
I tried to be patient and allow the medication time to work, but during this time my pain only seemed to worsen. I started having mild fevers and developed pain and stiffness in almost all of my joints. I then developed a uncontrollable muscle spasm in my right arm that would come and go unexpectedly.
I see a massage therapist for my migraines and she told me that at the time she could detect inflammation in all of my joints and around my spine.
I was not seeing any improvement in my back pain symptoms (by the time I finished the five week starter course of Lamictal and had started regular doses) so I contacted my neurologist. She told me that she suspected fibromyalgia and referred me to one of her colleagues, a spinal specialist.
By the time I was able to get in to see the specialist, my spasms had faded but were not completely gone, my back pain was the same, and my joint pain and stiffness seemed to be getting worse. At that time I was having a great deal of difficulty getting around, using a walker for short distances and needing a wheelchair for longer distances.
When I saw the specialist, she examined me for about fifteen minutes and then left us in the exam room while she reviewed my medical records. When she came back in she said she wanted to have me admitted to the hospital's in-patient physical therapy rehabilitation unit. She said she did not have a diagnosis, and that I would need to be admitted to be able to receive a diagnosis. I was told I would only be able to be admitted with insurance approval. She then sent me for more blood work (to rule out arthritis) and a range of xrays.
The insurance company gave us quite the run around, and took more than a week to decide that they wouldn't allow me to be admitted because I was "too young" to have these symptoms.
While we were waiting for the insurance company's decision my back pain had stayed the same, the joint pain and stiffness in my right hand increased to the point that for a few days I was unable to use it at all, and I began to experience random needle like pains and hollow-feeling aches in various parts of my body.
After finding out that the insurance company would not allow me to be admitted, I requested a copy of my patient visit record from the specialist (I wanted to have it on hand to help with my leave of absence from work). In the assessment, she speculated that I might have conversion disorder and implies that she discussed this with me (she did NOT) and that that was why I had agreed to be admitted to the rehabilitation center.
I didn't know what conversion disorder was, so I looked it up. (My initial reaction was- HUH?!):confused:
My concern with conversion disorder as a diagnosis is; to my mind all other organic causes for my symptoms have not been explored, and I have not been referred to a psychologist or a psychiatrist (the only people, in my opinion, who should be responsible for diagnosing mental illness).
The specialist has only seen me the one time (and only spent 15-20 min examining me). When I call her office with questions , my questions are deflected by her nurse. They seem unwilling to tell me how she arrived at this diagnosis, if she consulted with or would be willing to consult with another physician, or if they will be ordering any other tests.
I can think of no emotional stress or event that I could be suppressing, denying, or otherwise channeling into a manifestation of these symptoms.
I have had no benefit from my time away from work, and in fact my illness has caused me to miss out on a desirable job opportunity within the company. The time away from work has also put considerable stress on my financial situation, as I have exhausted all of my paid time off. I am now on an unpaid medical leave. I am/was happy in my job (and really miss it and my co-workers), I am happily single, and I have a great home life with room-mates who are my closest friends.
I have a follow up appointment with the specialist this Friday (April 18th).
Any ideas or possible insight would be greatly appreciated. Thank you.
More About Me-Personal:
Gainfully Employed
Happily Single
Previously Active & Healthy (only complaint: the chronic migraines)
Shy but Sociable
No Current Anxiety or Depression

More About Me- Medical History:
Scoliosis as a child- corrective surgery w/Harrington rods & clips (over thirteen years ago)
Chronic Migraines- Started at fifteen, were not actually diagnosed for three years (I had a rather ignorant doctor who refused to believe I was having them. He subscribed to the belief that migraines 'are all in your head', rather than an actual disease' and that I 'just wanted attention'.)
Mild Anxiety & Depression- Associated with the migraines (and rather expected considering it took three years before I got effective treatment)
Year-Round Allergies- Various indoor/outdoor, seasonal and food (all fish & shellfish)
Iron Deficiency Anemia
Medication sensitivities- average doses of most prescription or OTC
medications are too strong for me
Family history of: migraines, stroke, heart disease, cancer, Parkinson's, diabetes(Type 2), arthritis etc...

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5 Replies:

  • Have they looked for things in the autoimmune encephalopathy family, such as stiff-person syndrome or hashimoto's encephalopathy or even celiac disease?I'm not sure what this could be, but I know that I had a hard-to-diagnose case (Hashimoto's Encephalopthy) that took 8 years and 8 neurologists to crack. Numerous doctors thought I was cuckoo, so don't feel bad. I think it's fairly common for doctors to say stuff like that to patients when they can't figure it out.Instead of saying: "I don't know", they say "You're not sick"... which, of course can make the patient feel even sicker.Best Wishes
    Anonymous 42,789 Replies Flag this Response
  • Do you still have rods and clips in your spine? Are you taking any other medications, including birth control? DOM
    acuann 3,080 Replies Flag this Response
  • Thanks for the ideas...:)I do take birth control pills 150mg Ortho NovumAnd the rods & clips are still in my back. I was told that, unless there were complications, they wouldn't take them out.
    auntmonkey127 1 Replies Flag this Response
  • Sounds like you need to find yourself another specialist.. one who lies to you, just isnt a good one. Also many due to thier egos.. hate to tell someone that they just dont know what is wrong.. it's easier for them to just put it down to a psychriatric issue. So did she rule out fibromyalgia in the end???? (that isnt a psych issue but many doctors in the past and some not well educated ones, still may think it is). Do you also exhaust very easily after being active in any way?
    taniaaust1 2,267 Replies Flag this Response
  • Thanks for the ideas...:)I do take birth control pills 150mg Ortho NovumAnd the rods & clips are still in my back. I was told that, unless there were complications, they wouldn't take them out. How long have you been taking the Ortho Novum?DOM
    acuann 3,080 Replies Flag this Response
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