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Old 07-01-2013, 07:45 PM   #1
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Where to go now!

The MRI checking for multiple sclerosis was negative and the autonomic testing was negative. I suppose this should make me happy, yet I can't help feeling like it's just another dead end. Great it's not ms, so what is it? Rheum suspected ms, neuro suspects lupus and neither is willing to give an actual diagnosis. Are we going to go back to telling me that it's all in my head, because that's where I feel like that's what going to happen. Now it's time to wait and have the nerve conduction tests the end of August. Follow-up with rheum in Sept but no lab work scheduled before it, I think that's like going in blind but of course I am not the Dr. And of course keep dealing with the symptoms which really have become a part of life so I guess that's no big deal, right. I guess it was just time to vent. I hate complaining to my husband because he hates that he just can't fix this for me. And I don't want to be the constant complaining friend or family member..so back on with the smile that everyone loves. Thanks for being here!

 
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Old 07-03-2013, 05:19 AM   #2
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Re: Where to go now!

Sorry you're still in limbo. I was, too, for many years. That said, even knowing that diagnosis can take time, sometimes even years, doesn't really help too much, doesn't it? I mean, you know you're not crazy & all that, but the waiting is very difficult. Venting makes sense to me!

I saw in one of your earlier post that ANA and anti-ds-DNA were positive on an earlier test. Did you ever get copies, particularly to see how high the anti-ds-DNA was?

Were some iron levels low, too? Is a hematologist (still) in the picture?

I don't know how long you've been seeing multiple "ologists". I hit a point when I determined that I'd change doctors if one more round locally got me nowhere. Well, it didn't, so I did! My new rheumatologist (laughably?) diagnosed me in less than a month, redoing all tests & shipping me to a dermatopathologist for my third (and final) skin biopsy. Made it look easy.

While waiting to do that last round with my local doctors, I started a file of prospective new doctors, so I had names in mind when I finally decided to ramp up. You may want to start such a "Plan B" file.

I found several library books helpful, too. There are a couple on lupus that discuss lupus AND differential diagnoses (things like MS, hemolytic and other anemias, etc.) Nicest part of all? Library is free, so you get to see which books are the most helpful, instead of purchasing a whole bookshelf. I hope you get clearer results on your next round and/or a solid "Plan B" that you can invoke if needed. Thinking of you, Vee

 
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Old 07-03-2013, 07:07 PM   #3
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Re: Where to go now!

I have been very happy with my hematologist, he takes the time to explain the results of tests and is loved by the nurses which I think speaks volumes about a Dr. He is the one that found the ANA of 1:320 and dsdna of 35. The only low iron results that I have had is the low Ferritin and he had me get 2 Venofer infusions and then will recheck me in December. I thought that seemed like a long wait but the nurse explained to me that Ferritin takes quite a while to balance out and they want to see how my body retains the iron. The neurologist that I saw seems very good and again took the time to explain things to us. At my first appt he told us he felt my diagnosis was between m.s or lupus. MRI and auto testing were clear for m.s lesions. His nurse called me yesterday and said that I had a slightly positive urine immunofixation polyclonal. She said that he wasn't too concerned and it was just another puzzle piece at this point. I am scheduled for a EMG the end of August and now they added an Evoked Potential Test also. The neuro suggested physical therapy to help with the nerve issues and weakness but I tried that last year and it didn't help with the nerve issues. He also suggested neurontin, which i have tried and felt awful on, I will take nerve pain over that med! then he suggested Cymbalta which i just stopped taking about 2 months ago. I was on it for a little over 4 years and it helped me get through some tough times but I don't think it really affected the nerve pain. It seems like all of my tests are on the low side of positive and that seems to slow down the diagnosis. I am learning to listen to my body and not be so stubborn Sometimes slowing down a little isn't so bad. I am trying to be a good patient but working in the healthcare field makes that a challenge I try to read and learn all I can, but I still the best source of knowledge is from people that have been there.

 
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Old 07-03-2013, 07:20 PM   #4
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Re: Where to go now!

I don't think 1:320 ANA or 35 anti-dsDNA are on the low side, they are pretty much right in the middle of positive range. I truly don't understand why your rheum is not leaning toward lupus with neuro symptoms. The VEP is a very sensitive test for MS, so if that comes back negative, I would find a new rheum for a second opinion.

 
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Old 07-04-2013, 01:21 AM   #5
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Re: Where to go now!

Hi. I still think the scale for your anti-ds-DNA is needed to quantify your result of 35. For example, the scale my lab uses is
< 25 Negative
25 - 34.9 Equivocal
35 - 99.9 Weak Positive
100 - 200 Positive
> 200 Strong Positive

What is "urine immunofixation polyclonal"? A type of urine cast seen in MS?

While running errands last night, I was thinking of reasons some diagnoses can take so long. A slowly evolving condition, sure. Weak positives, certainly, like you're getting back... but as those ADD UP, doesn't the aggregation mean something?

I had a rash my local doctors didn't recognize (SCLE, not malar or discoid); an antibody they weren't testing for (anti-Ro); a very useful test that wasn't run for years (lupus band test); and my ANA stayed negative (very rare in SLE). I wasn't ringing "lupus bells" to my local drs. But for my METRO specialists, I was a fast, straightforward diagnosis.

Your drs. have obviously done many tests and are taking you seriously. But I wonder if there are OTHER TESTS possible---ones used on "outlier patients" for whom the most common useful tests aren't proving very useful? For lupus, maybe a Lupus Band Test? I believe it can be positive on non-lesional skin, even in people without visible rashes? I wish I knew more...

 
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