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Has anyone ever been diagnosed with primary lateral sclerosis or motor neuron disease even though you have tested positive for lyme?
Posts: 39 | From NJ | Registered: Nov 2005
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Dis, I think that's just another label for a set of symptoms. The Med. Machine has gotten very creative with their labeling game. MS ALS Fibro.... It's only my opinion but I sure wish they would get as creative in their efforts to find causes and cures for these diseases as they have in thinking up names for all the different symptoms. IMHO You tested pos for lyme. I think whatever sx you have, they were caused by lyme..Some here weren't lucky enough to test pos..they still have lyme clinically dxed. kt
Posts: 740 | From BC Canada | Registered: Mar 2003
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Thanks, Krazy. I sometimes think I am on a roller coaster. My LLMD has been treating w/IV since March (she's great) but whenever I see a neuro they always discount the Lyme. This is really taking a toll on my sons and husband.
Posts: 39 | From NJ | Registered: Nov 2005
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If the neuro is not helping you, then why return? Just more stress. Putting names on groups of symptoms is not especially useful in this case.
Posts: 8430 | From Not available | Registered: Oct 2000
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Dis, I agree with Lou. Why deliberately set yourself up for another slam and doubt.
Personally, they dxed me with ms because of brain lesions among other sx..20 yrs later I,m in a w/chair. Since being treated as of 2003 and recently specifically for babesia these last couple of months, I am finally getting better and have every indication that I will be walking very soon!
I didn't test pos for babs, just treated. Sure glad I did! kt
Posts: 740 | From BC Canada | Registered: Mar 2003
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I am sorry that you are having to go through the roller coaster that is all too common for patients with lyme.
Perhaps it would help if you where to get yourself some literature that they could read that would help them to understand what you are going through.
As to your neurologist, unless he is Lyme literate you will be wasting your breath and a large portion of your sanity...Try to get yourself a Lyme literate neurologist. If you can not get on and your stuck with him get your hands on some research by Dr Brian Fallon and give it to him..
Hope this helps
Julia
-------------------- Please consult your LLMD before making any changes to your treatment regimen. Posts: 641 | From NJ, USA | Registered: Oct 2001
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Don't add more stress to your situation (and to your family) by seeing the neurologist - UNLESS your LLMD says you need to go.
Listen to what your LLMD says. Are you improving on the IV?
A man here in South Carolina was diagnosed at Mayo (Florida) as having Primary Lateral Sclerosis. I sent Lyme info to his son, but his local dr apparently was not interested. This man has always been an avid hunter & fisherman, so Lyme should be considered.
When I checked info about PLS, I learned the following facts: * extremely rare * symptoms of PLS are also symptoms of Lyme * diagnosis of exclusion - NO test for PLS * info listed 6 Lab studies that should be done. LYME was #5 on the list. * conservative estimate of cases - NOT MORE than 500 people with PLS are currently living in the U.S. * no treatment to cure PLS
When you consider the facts & the probabilities, PLS does not seem at all likely for the diagnosis. With thousands of cases of Lyme every year & so few cases of PLS, what are the odds here?
Why would a dr want to diagnose an extremely rare disease that is terminal when it's so likely that the true diagnosis is a treatable illness?
(Could it be that they may feel some sense of notoriety if they diagnose an extremely rare disease?)
You're blessed to have a LLMD!!! Follow her advice.
Keep in touch & let us know how you're doing. We care.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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Thank you for all your support and information. It is very frustrating to not be able to walk and speak the way I always have. We live in northern NJ and have spent the last 10 yrs on soccer fields and baseball fields. We also have spent summers hiking and camping in NM and CO. Of course, for the neuros, that has no bearing. I have actually seen Dr. F and he agrees with my IV treatment.
Posts: 39 | From NJ | Registered: Nov 2005
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
Northern NJ, who is your neuro? I was to many of them prior to diagnosis. They kept looking for ALS, when they couldn't get EMG findings consistent w/it they told me it was BFS or anxiety. There are a lot of ducks out there.
-------------------- Mathias Posts: 1250 | From New Jersey | Registered: Feb 2004
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up
Posts: 39 | From NJ | Registered: Nov 2005
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
Only know Britton from that group. Very suprised would think PLS when you have positive tests for lyme. My experience was better at Columbia than that.
-------------------- Mathias Posts: 1250 | From New Jersey | Registered: Feb 2004
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