Re: from new member Carmie

[Guest guest]

All I can offer Carmie is lupus is so allusive. Sometimes it takes a REALLY long time to get a final dx. Don't give up. My numbness, pin pricks, tingling, and pain is in my legs and feet. I take Nerontin too but still have trouble. I take plaquinil and celebrex for lupus. We all seem to live with fatigue and achs even on meds. Don't give up searching for the answers. Welcome to the group.

Cheryl in CA

-------Original Message-------

My primary care physician diagnosed lupus in the fall of 2000. I went to him during the summer because I was suffering from extreme fatigue, nausea & stiffness in my ankles. My greatest concern was the overwheliming fatigue that I had been experiencing for about two months prior to the appointment. During the exam, he noticed & questioned my hair loss. I had lost some hair after the birth of my daughter in 1986, but was told that this was a common occurence after childbirth, and that it would soon grow back. It never did. My doctor ordered blood tests and based on those findings & my symptoms diagnosed lupus. He prescribed plaquenil, 200mg once daily, which I have been taking since November, 2000.

Over the years, I have experienced periods of overwhelming fatigue and my entire body aches. I also started feeling numbness & tingling in both of my hands and it radiated up into my arms. There are times when I feel these symptoms in my feet & ankles, but definitely not as frequently as in my hands & arms. I mentioned this to him during an exam in the summer of 2002. He referred me to a neurologist to rule out carpal tunnel syndrome. This was ruled out, so my PCP ordered a cat scan of my cervical spine. The cat scan showed some narrowing in my spine, so he then referred me to a neurosurgeon. The neurosurgeon explained that stenosis & mild arthritis in the cervical spine is quite normal for someone my age (late 40s). He felt that the numbness & tingling was a result of the lupus and suggested that I go back to a neurologist.

At the time, the only neurologist in my area was preparing to close his practice and move out of state. It was several months before a new neurologist was recruited. By this time, I just accepted the numbness & tingling. MY PCP had prescribed neurontin to help, but I was not able to tolerate it. He then prescribed elavil and I was not able to tolerate it, either.

Last week I saw my PCP because I am in another period of fatigue. I mentioned that the numbness was still bothering me and that during the period of time when the fatigue is most overwhelming I have noticed that I am somewhat clumsy. I run into tables, chairs, walls, etc. and I seem to drop paper, dishes, utensils, etc. He referred me to the new neurologist and also ordered a new round of blood tests ( I haven't had any follow-up blood work since 2000).

I saw the neurologist today who hinted that I may not have lupus after all and that quite possibly the plaquenil is causing the numbness. MY PCP said that I have peripheral neuropathy as did the neurosurgeon, but the neurologist is disputing this. He ordered additional blood tests as well as a cat scan of my brain to rule out MS (he highly doubts that I have it, but states that the test needs to done to rule it out).

I am now at a point where I am so very confused. If I don't have lupus, then what is causing the fatigue and muscle aches? And if I have been misdiagnosed, what damage has the plaquenil caused? The fatigue gets so overwhelming that I cannot go to work. In the last three weeks, I have missed seven work days.

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