Had diagnosis/Don't know whether to keep it - Fibromyalgia Message Board

tonisuzette · 10-30-2003, 11:04 AM

I have some questions with the diagnosis with FMS and the process. Let me acquaint you with my situation. In the 2000, I found myself becoming very sick. Some of my symptoms at the time were similar to FMS/CFS, but the “pain points” I did not have.

Without complete testing, my doctor at the time diagnosed me with both. Because he did not even touch me (to check for tender points), or do any tests other than the basic blood panel. I was leery of his diagnosis and I got a second opinion from a DO. He check my back (no tender points) and check for viral infections. I tested positive for Epstein but he felt the levels were no high enough to cause problems.

I moved and quit seeing anyone. I changed my diet and start up supplements, but it got worse. I have deloped neuropathy in my arms legs and now torso, partial seizures, my sight blurs, and my ears are effected. Eerily similar to MS. My doctor will acknowledge I have neuropathy, but he doesn’t know why. I went to a neurologist. He seen me for five minutes. He did partial testing, but did not do all the tests required to rule out degenerative nerve diseases, so I’m left wondering if my neuropathy is just painful or is it going to take my movement one day.

The neurologist refuses to see me again. I feel for insurance reasons. My neuropathy has changed. Before it would come and go. Now if I have an active day or exercise it exacerbates the neuropathy. I ‘m still active despite it causing pain.

I’m stuck in the relapse/ remit cycle, and the sick days are out weighing the well. I have been sick for three years. I have been seeing my doctor for a year. He has ran the basic tests as well, but seem uninterested in helping me put a name to my illness. He treats some of the symptoms, but won’t open up to getting to the bottom of it.

With no new information on what was happening to me. I dug up the records of my first doctor who gave me the diagnosis of FMS/CFS and took them to my current Dr., but he would not concur with him.

His response was shocking. He said that some doctors including himself do not believe that FMS exists. He believes it is caused by depression or a mental flaw. This infuriates me. How can they come to that conclusion so quickly based on 5 minute visits.

When I first got sick, I was on top of it reaching personal heights in my life. I was graduating college in a field that I love. I was planning on continuing my education. My home life had never been happier. Things were really looking up for me. Depression at the time it was the furthered from me.

I have said him to them and he just look at me like I wasn't creditable.

Have you encountered similar problems in the diagnosis department? Are they blaming you mind for the all problems? Can FMS lead to neuropathy? My pain is deep nerve pain not muscle or tissue pain. I get weakness and at times it hurts(weakness too) to move my arms or walk.

Because of this recent change, I have been willing to accept the first diagnosis to receive treatment, but now I need a Dr. That believes this thing is not in my head. A lot of my symptoms are the same. I’m unable to keep a schedule, so I can’t work. I have to keep the medicaid going and need a solid diagnosis and I want to apply for disability .

I’m disenchanted with doctors right now, and I don’t know if I want to start up with another,but might have to. I feel like I’m not being taken seriously. I’m afraid that they are waiting for this thing to further manifest and I don’t want to lose my legs waiting.

Input would be great appreciated. Thank you and I hope today is a good day.

dayton · 10-30-2003, 11:10 AM

Gee, Toni, I'm so sorry. I feel for you. I'm still in denial about my diagnosis so I know how you feel.

Have you had any small injury, banged your foot, fell, broken arms, etc.? Reason I ask is that you can get reflex sympathy dystrophy over something as simple as a bee sting, shot. Me, I hit my foot on a chair, and 10,000 K later I'm still being told rsd but one doctor did diagnose me with fibro.

keep searching. i hope others can help.

rainonwindow · 10-30-2003, 08:48 PM

How could the neurologist refuse to see you if you suffer from partial seizures? He doesn't think they need to be treated? If you have epilepsy, you should be followed for it.

I would encourage you to keep actively searching for answers on your own. 14 years ago I diagnosed my own hyperparathyroidism after doctors kept coming up with nothing. I went to the library and read everthing I could about my symptoms. Even though my routine blood work was 'normal', I found out that the ratios weren't normal. I coupled it with my symptoms and wagered I had the answer. When I went to the doctor again - she said: Well, what do you think is wrong with you? I answered: I think I have hyperparathyroidism. She did blood work for it. The high limit of normal was 40. I had a 58.

Don't give up. I went to a number of unproductive doctor visits (one early on suggested a psychiatrist for my deja vu) until it was figured out that I had epilepsy.

When I was 12, I complained of heart symptoms that bothered me off and on for approx. a year. The doctors couldn't figure it out and eventurally decided it must be due to anxiety. Years later while having an echo of my heart, the cardiologist told me that at some point in my life I had had pericarditis and the sack around my heart was thickened as a result. The symptoms of pericarditis matched those I had as a child.

I wish doctors could just accept that patients can be perfectly capable of knowing whether or not their symptoms are genuine and whether or not they are due to anxiety.

I wish you success in gaining more understanding of your symptoms and finding someone who can help you get proper treatment.

[This message has been edited by rainonwindow (edited 10-30-2003).]