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Old 10-01-2013, 03:37 PM #1
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Question

Elevated eosinophils is a cardinal sign of parasite infection.

Have you been evaluated carefully for Lyme?

We have a poster on PN who went undiagnosed with nerve pains and more and just had a new Lyme test since 2012, which showed positive, when the other tests were neg.
Lyme is really difficult on the nervous system.

Here is his post with details on the new testing:

http://neurotalk.psychcentral.com/post1018647-10.html

We have had posters over the years on the various forums who have had chronic and confusing collections of symptoms and ended up with a Lyme diagnosis.
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Old 10-01-2013, 07:29 PM #2
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Cess, it does sound very much like MS, but Mrs D is right, there are
other diseases that mimic MS. Lyme is one of them. If you have
been cleared of Lyme, then I would certainly keep pursuing a DX.
If this calls for a new Neuro, then, so be it.

Let us know how it goes for you.
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Old 10-01-2013, 07:58 PM #3
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Default Tested for everything.

I have been tested for everything from Lyme to Lymphoma and everything in between. The number of blood tests I have hard is crazy. I'm not sure what 2 tests they took for Lyme so I called my doc and asked. They are calling back tomorrow.
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Old 10-04-2013, 05:17 PM #4
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i know neurologically that Vit D is very important. i would push to take a supplement of Vit D. have the dr tell you the dose. i take 1000 IU's/day. a lot of us take Vit D.

another thought i had was: have you seen an opthamologist? many times with vision/eye symptoms the eye dr can see MS changes. i'm not saying that's what it sounds like. but don't overlook an eye exam by an eye DR, not optomatrist.

you might also want to consider the suggestion of getting a 2nd opinion from a neurologist or an MS specialist. get copies of your test results and cd's of your mri's. you'll need them and it's a good idea anyway when you're having as much done as you are. start amassing a medical file on yourself you can take to different drs.

keep us posted.
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Old 10-05-2013, 08:14 PM #5
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Default Pulling records...

I'm taking the most common advice...time for new docs.
I'm getting a neuro. I pulled all my records from the last decade and my spinal tap/CT and MRI from 6 years ago showed lesions! Apparently no one thought to mention it. Also, scheduling an appt with Neuro Opthimoligist.
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Old 10-06-2013, 11:18 AM #6
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My experience was perhaps similar to yours. I ended up with three diagnoses, MS, Porphyria, and (later) Polycythemia Vera. The Porphyria is genetic and I had it all my life but symptoms were rare at first and not diagnosed. Then MS came in as a dx when I got Optic Neuritis (please see my lengthy post just made on the thread for Optic Neuritis). I believe I have both of these in synergistic combo, but I stopped seeing neurologists when I found I was doing everything I could do for my condition without their help.
Later I developed another genetic malfunction which is NOT hereditary, Polycythemia Vera. In this disease the "'phils" are usually not normal but the doctors don't pay much attention to them--they are looking for changes in red cell and platelet counts. For this disease I see hematologists. So you might possibly add hematology to your long list of "who to see". Polycythemia Vera or its cousin ailments should be pretty easily dx'd by a CBC (regular blood test) and perhaps a test for the JAK2 mutation, which would be diagnostic if positive. This disease I got much later in my life, but I don't think it would hurt for you to be checked out for abnormalities in your blood panel. Maybe this has already been done.
I have learned over the years how to manage my illness with diet and avoidance of triggers. My pcp and her assistant are wonderful in helping me avoid drug triggers, and an online Porphyria group has provided the rest of the triggers. For my Polycythemia Vera I went twice to Mayo Scotsdale for p32 radiation, which has now stabilized my red cells, so I haven't needed phlebotomies now for four months. I think Mayo Scottsdale is very good for hematology--they even verified my Porphyria (even though that was not what I was there for at the time). I saw Dr. Cammoriano there (hematology) and also was sent to an outstanding neurologist.
This sounds confusing but you too have a confused picture. Hope it clears as much as it can.
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Old 10-06-2013, 06:02 PM #7
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I have an appt with the hematologist in 2 weeks too! My EOS level is at 28%. I have done some reading and have found some really interesting stuff about studies in the UK, Germany, Sweden and Canada that have shown in a certain population of people with MS their eosinophil level spikes during a flareup.

I had a bone marrow test last year and all it showed was my EOS level was at 21% and no I didn't have blood cancer.

I am doing some research on the MS center at Mercy hospital in Sacramento, turns out it is covered by my insurance so I my just saddle up and head that way if they keep jerking me around up here.
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