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Hi, my name is Lisa. I'm sure you've heard what I'm about to write a thousand times, but I need to post it anyway.

In 2002, I started having bouts of severe fatigue, which usually occurred during the summer, but my doctor could find no reason for it. The fatigue then started occurring more frequently, about every two or three months.

In May 2006, suddenly everything hit the fan. The fatigue was back with a vengeance, and added to that were various neurological symptoms such as tingling, numbness, shooting nerve pain, severe spasms and weakness in my legs and arms, tremors, a present Babinski reflex, cognitive problems, burning sensations in my cheek, etc. I have had several flare up of symptoms in the past 2 1/2 years, though I do have some symptoms which are constant. A bad flare up this past spring resulted in my having to use a cane for several months.

I have had every test in the book, including MRIs, NCS, EMGs, an LP, numerous blood tests for Lyme disease, SLE, etc. My doctor first felt that I had multiple sclerosis, but my MRIs are always clear. She still thinks it's MS, though at this point, I'm doubting it. I'm so tired of being poked and prodded and scanned. I haven't even been seeking a diagnosis for the past 6 months because I got so frustrated with not getting any answers. But I'm only 46, not old enough to feel as old as I do.

Recently, I have started having severe pain around my elbow joints and in my lower left ribcage. The pain is constant and makes picking anything up very painful. I've also had swollen lymph nodes in my neck and under my arms for months, but have had no infection. I've been on several courses of antibiotics over the last five months, but the nodes are unchanged. In addition, my hair is thinning out on top.

Last week, I noticed a half-circular red-rimmed rash on the side of my right breast. It's now a full red-rimmed circle, though very irregularly shaped. It doesn't itch, but a breast reduction surgery in 2005 has left that area totally numb anyway, so I wouldn't be able to tell. I've used anti-fungals on the area for about a week now, thinking it was ringworm, but there's no improvement and to tell you the truth, it doesn't really look like ringworm, plus where on earth would I get ringworm, especially in that area? It's not wet or moist or raw looking; it just has that red irregular ring around it. It hasn't shrunk or grown in size at all either. The funny thing is, I've had this same exact lesion in almost the identical area several times before in the past. It always just shows up about every six months to a year and lasts for several weeks to a month, and then just disappears.

I saw my neurologist again this past week and he ordered another ANA test, which I'll have next week. Is it possible for an ANA to be negative two years ago, then change to positive? Does any of this sound like lupus?

Thanks and hugs to all,

Lisa
 

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Hi Lisa

I can sympathize with the frustration with the neurological symptoms.

My name is Kate. I am 28 years old. First, I had fatigue. Then I had painful joint pain in my hands and feet. My ANA is barely positive-1:40 (sometimes people with this low an ANA are completely normal, sometimes not). Then I had the muscle weakness, the tingling, numbness, neuropathy (occasionally), and I have too have had clean MRI's, and lumbar puncture that had slightly elevated protein (but not enough for my neurologist to say much).

I am in MS research, I recruit patients for a neurologist who wanted to start an MS registry. You probably have been tested for this, but I thought I would ask just the same. Have you ever been tested for something called neuromyelitis optica antibody? There is a condition called Devic's disease, but it usually involves eye problems. But, Devic's rarely shows up on an MRI. I know a patient with this condition, who has completely normal MRI's and LP's, but she clearly has CNS disease and takes a medication called Tysabri to treat it. She had an abnormal spinal MRI once.

I have been doing some reading, and Lupus can have neurological involvement. Are you working with a rheumatologist at all or just a neurologist?

As far as my own neurological issues, I have not gotten any answers as to why sometimes my right leg goes weak, and I have to use a cane or I fall over. My rheumatologist believes I have probably have lupus (but is afraid to label me), but she did start me on plaquenil. My neurological problems though remain a mystery, and I will probably continue to get MRI's. I will throw out one other thing, don't know if it will interest you or not, but I am being tested for strongiloides (a bug that you can catch in Southeast Asia and other areas as well, that stays with you for years, and can cause a whole host of bizarre symptoms). I was in Thailand in 2004, and South Korea in spring 2008 (fatigue started about a month or two afterwards). Again, I know your doctors probably asked this question, but have you been out of the country much?

If you do get answers eventually, I must say, I would be very interested to hear about it, seeing how I have mysterious neurological symptoms as well that don't seem to have much evidence supporting them on neurological tests. The only thing I haven't had done is Evoked Potentials and Visual Evokes Potentisl, but I am having that done in the second week of January. I can't say much about the rash you sometimes get. I too, also have the chest pain. I can barely take in a full breath right now, and it makes sleeping very difficult.
 

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Hi Shashi,

A few of us on the site were first tested for MS. The neurological symptoms can be very similar. Sometimes it takes time for the tests to be conclusive. In your case the Babinski reflex leans toward MS, but it can be found in other conditions.

Have you been tested for antiphospholipid or Hughes's Syndrome? I am posting a fact sheet from this site for you to read.

http://www.uklupus.co.uk/antip.html

I hope it doesn't take much longer for you to get a definite diagnosis.

Take care,
Lazylegs
 

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Hello Shashi, There is little I can add except to welcome you here. My bloods were all negative for a very long time, eventually they became positive but by that time I had been diagnosed even with out bloods. My symptoms were very severe and I was lucky that other lupus patients advised me to go to Dr, D'Cruz in London, he and other enlightened Lupus Docs will often treat for "lupus like illness" even if bloods are negative, if symptoms warrant it.

One thing you need to be aware of is that not all Rheumatologists are specialists in Lupus, some have never seen a case except in a textbook and lupus is so variable you are unlikely to have a textbook case. There is a lot of good information on this site about symptoms, family medical history etc. I suggest you have a read and also ask any family members about ANY auto immune problems.

I know you haven't been chasing a diagnosis lately but whatever your illness is called you do need symptom relief.
x Lola
 
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