Fibromyalgia or something else?

[kimbykat]

I am a 28 year old female. Almost two years ago I started having pain in my face and severe pain in my eyes. At the same time I would have these symptoms, I would have numbness and tingling in my left arm. I went to my doctor's office and the dr I was seen by (not my usual PCP) told me I had a sinus infection. I went for a CT scan of the sinus which was clear and took medication for the "sinus infection" but it never went away.

To back track a little bit, almost 7 years ago I was diagnosed with "Junior Myoclonic Seizure Disorder" because of "jerks" and constant muscle spasms through out my body along with intense migraines, one lasting 6 weeks. The jerks could be quite scary with strong head snapping, leg kicking and my legs pulling up at the knees.

As time has progressed, I started noticing vision changes (blurry vision), wide spread pain, burning, tingling or "buzzing" senstaions, numbness in both arms, both legs, muscle weakness throughout and fatigue. I have seen my PCP, many specialists that she has referred me to and gone to the Mayo Clinic as a final resort. I was diagnosed with Hashimoto's thyroidits and several stomach ulcers and FMS.  

Upon my discharge, I was referred to a physical medicine dr at Mayo. Over many exams sensitivity abnormalities were found in my legs, ie patches of numbness which no one could place. After the exam, a second dr came in and expressed worry over information turned up on some not so good xrays from a hospital visit prior. While he did not go into detail at that time, he expressed that my spine was not in the best shape. I had much verterbral compression, fractures throughout my spine, worn away spots and other issues he didn't go into. They ordered more more detailed xrays but never got back to me and I never got the results.

I was discharged and basically told by the coordination dr at Mayo that he felt FMS was a "blanket term used to describe unspecific symptoms".

As time has progressed, my muscle spasms have continued with strange sensations in the left side of my face (tingling, some numbness), migraines with a burning sensation in the head, stiff neck, blotchy skin, continued numbness in the legs, some loss of balance and  increased pain in my back/spine. I took a look at the Mayo notes from the bad hospital xrays and their notes indicated spinal lesions, compression, fractures, forminal stenosis and two disk hernations. They indicated that they couldn't tell from the xrays if the lesions were "healed granulomas" or hemogiomas. There are several of these unknown lesions down my thoracic spine,

Finally, in much pain and emotional distress from the toll this has taken on my work, my personal life and my head, I went back to my PCP. I mentioned the lesions and the intense pain in my back with the difficulty walking. She freaked out and told me she would immediately contact my usual neurologist (who I had discontinued seeing b/c Mayo told me I didn't really have seizures, just non-specfic myoclonus). I have seen three neurologists over the years since my JME diagnosis. My usual neurologist has been quite convinced that I have valid seizures and has had me on Depakote daily 3,000 mg.

Needless to say, my doctor did not get in touch with my neurologist and she is now on vacation. I have had several MRIs and several CT scans. I have never had an MRI with contrast nor have I had an MRI of the spine or a lumbar puncture. Some of my blood tests have come back with notes of an elevated white blood cell count and unknown inflamation present.

My PCP did not agree with the diagnosis of FMS or at least not for some of the symptoms I have been displaying on/off for the last year and a half. I have had the jerks and spams for 7 years. I find that the spams in themselves can be extremely upsetting because they happen through out the body and last for long periods of time. I do suffer wide spread pain but I'm unsure if that covers the sever pain in the eyes w/ vision changes and the sensations.

My last visit with my PCP she indicated that she did not think that I had somatoform conversion. It seems that previous symptoms I had which were not mentioned were attributed to Hashimoto's thyroidits and have abated with treatment of Lexoxyl for the thyroid.

I guess what I'm looking for is I have seen so many doctors, specialists, had so many blood tests. I've had a nerve conduction study which came out negative. One dr says I have JME, one does not. One indicates FMS and another disagrees. Right now I'm not on any medication other than Tramadol for pain. I have gone back to my regular dr and neurologist numerous times almost begging for help but they push back and forth insisting the other take responsibility for treatment. I'm wondering if I should suggest a lumbar puncture and perhaps MRIs of the spine and brain but this time with contrast?

thanks in advance,

kimberly

[patsy10]

I've been right where you are.  I know what you are going through. I've had all the tests and still have no confirmed diagnosis.  All my tests came back normal.  I did improve since taking a long course of antibiotics so I'm better than I was, but far from normal.  Don't give up.  I improved quite a bit.

[kimbykat]

Valley Fever shows up as a spot on your lungs and I think it has a lot of similar symptoms to MS but I'm not really sure. All I know is I don't have it. :-|

When I get in touch with my dr tomorrow, I will request an MRI with contrast of the brain and spine. I have become more concerned with the spine because they did find thoracic lesions and I at least want to know what those are! I think I will also inquire on the spinal tap. I had thought about that one a lot for some time especially since they test and test and can't seem to figure things out. It seems to me everyone keeps missing things that seem pretty obvious like doing the MRIs, doing the spinal tap, investigating the lesions etc.

It's terrible to feel crazy and alone. I have at times really wished that I would just get hit by a car because I feel like most days I can't go one with my normal life. Everything is such a huge effort and often I'm just crying a lot.

Thank you for your advise and help.

hugs - kimberly

[patsy10]

I don't know what Valley fever is but lyme is difficult to diagnose and may or may not show up if you have it.  It really takes a doctor who specializes in this to diagnose it.  I think MRI's with contrast would be the first test that needs to be done.  A spinal tap would be secondary, depending on what the MRI's show.  I've had the MRI's and spinal tap.  It's horrible to live with this stuff and have no answers.

[kimbykat]

A co-worker of mine suggested "Valley Fever" and Lymes disease as well. At the Mayo Clinic, they advised that they did every reasonable blood test. Is Lymes something that would come up on a blood test?

I am also surprised they didn't do an MRI w and w/o contrast. I had a situation a few years ago where I had a chiropractic adjustment at a physical therapy clinic after having had horrible back pain. They did xrays which they showed me (no mention of lesions then) and told me I would suffer permanant pain but therapy would help. After the adjustment, I suffered dizziness which is normal but it lasted over 24 hours and they referred me to a chiropractor that also practicies neurology. He requested detailed MRIs from my doctor but the place I went to seemed to ignore my asking them about the contrast and it was never done. He told me to be careful with adjustments because he felt I had a neurological issue then. He also noted my pupiles did not dialate when light was shone into them which also concerned me.

[patsy10]

In my opinion, one of the first things that should have been done was an MRI of the brain and spine with and without contrast.  I think the specialists you have see were completely negligent in not ordering this.  Some  conditions that could cause these symptoms are MS and Lyme disease to name a couple.  These need to be ruled in or out.  You have abnormal lab work as well.  I would get a new neuro or ask your PCP to order these tests. Fibromyalgia is not a disease.  It is a group of symptoms without a known cause.  It's really a wastebasket diagnosis.  In other words, instead of saying "I don't know" they feel they have to give a diagnosis.  So people generally get fibro, chronic fatigue or "it's all in your head", depression or anxiety.  I would keep looking until you get an answer.