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» LymeNet Flash » Questions and Discussion » Medical Questions » Neuro Recommendations

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Author Topic: Neuro Recommendations
seekhelp
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I had an appt with my neuro a few days ago. The doc's a nice person and compassionate. He is empathetic about me losing my LTD payments and is trying to help. I did have issues with some parts of my neuro exam such as blinking 25 times and balance when closing eyes.

I showed him my Lyme WB from Igenix. He did bring up Lyme, but said he's no expert. He said my issue is one of three in his eyes: Lyme of an infectious disease in nature, Chronic Fatigue, or an unknown illness that modern medicine can't diagnose. He does not believe depression at all.

He's sending me to a physiatrist to do a functional capacity test to try to use against my LTD insurer (proof I can't do specific things).

He also is referring me the head of the Infectious Disease department at the hospital he's affiliated with who is a close friend. He 'says' the person is not condescending after I told him of my experiences in the past. He also wants me to see a quality Rheumatologist.

Ho hum...done this stuff. Why bother? Well, I deperately need LTD approved on an appeal and maybe it's worth trying to comply? What would you do? I HATE ID docs now. I was insulted and humilated by one in late '07 when I first fell ill.

I surely don't intend on altering my treatment offered by my LLMD.

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feelfit
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A physiatrist was an instrumental component in my disability approval. I think that that would be most helpful to you as they only determine functionality.

IMO if you see another ID or rheumy and they are arseholes, denying anything solid, you've just got two more reports against you.

Just my opinion.

Feelfit

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seekhelp
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I agree Feelfit. I'm shooting for Chronic Fatigue though. Perhaps a Rheumatologist w/support it. Lyme sure as hell doesn't cut it. [Smile]

Tried to return some bottles today at the grocery store. I got so fatigued walking from the car to the front of the store and putting bottles in the automatic counter that I started trembling. I coundn't cash my recipts as I was too shaky. Wow. Scary. [Frown] Any walking or exertion on most days, not all, does me in. I'm so scared ahout cardiac issues even though the tests I had were OK. Something isn't adding up.

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seibertneurolyme
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First question -- is this a social security disability claim or a short term or long term disability claim through either a private policy or through an employer? What you have to prove is very different depending on the type of claim involved.

Hubby has been through both and I can give you some pointers after you answer my question.

Bea Seibert

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seekhelp
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Not SSDI...group LTD insurance through UNUM. A REAL battle to win. [Frown]
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Keebler
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-


As for sorting glass bottles, the noise along would have caused me to blast off and then melt down. This might best be a chore for someone else in the future.

As for the rheumatologist, some of the them do not believe in CFS. They like the label of fibromyalgia or depression.

---

When you say " Something isn't adding up."

Really, this is what lyme is - it's all adding up to hallmark lyme patterns. It is not a walk in the park and neither is treatment.


I know you don't want to have lyme and that you are only into 3 weeks of treatment but, really, this is a horrible disease and it's rough.


If you can recognize that and give yourself a break, it will be easier than being surprised over and over. I don't want to be negative - and you can get through this - but repeatedly you remark about how this just can't be lyme and stuff does not add up.


All the events you describe fit lyme symptoms to a tee. Perhaps the fact that the established medical community is so in the dark makes it harder to acknowledge. I know I still can't believe something can be so uniquely devastating but it's not common knowledge to the world.


Be kind to yourself. This can get better.

======

You asked: What would you do?

I would NOT see the ID doctor or the rheumatologist.

I would see the psychiatrist but only after he reads Pam Weintaub's (sp?) blog with Psychology Today and her book, "Cure Unknown"


I hate that you are forced to see a psychiatrist - I think a psychologist would be a more open choice as most psychiatrists just like to prescribe meds. They do not do counseling and may not understand the adrenal dysfunction and fatigue.


Can you ask for a sleep study? That might help document some things and the results may help, too.

-

[ 04-18-2009, 02:34 AM: Message edited by: Keebler ]

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Tincup
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I absolutely would not do any of the things suggested.

If you want... go back and look at the warnings here about the neuro psych tests.

You may think this is a good doctor.. and he may be trying to help...

But you are getting ready to get the shaft.

If anything... what he recommended will hurt your disability.

Especially if your insurance is paying for it.

Just my opinion.

I agree with Keeb.

[Big Grin]

--------------------
www.TreatTheBite.com
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seekhelp
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Tincup, my LTD insurer cut of benefits recently. I'm trying to win an appeal however possible as I'm desparate.

Without the physiatrist's help. it's over. No Dx = no payments. No compliance = no payments. You have to do something.

Believe me, I GET what you're saying about the ID doc. Keeber's suggestions make sense too. I'm between a rock and a hard place. THe medical communituy sickens me now.

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feelfit
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Seek Pepole are reading: PSYCHIATRIST

They are not processing that you wrote: PHYSIATRIST

There is a big difference between the two.

Feelfit

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seekhelp
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I was wondering Feelfit, but not sure. I too confuse them as they sound so similar. The way I look at it once anyone mentions Lyme, they're labeled certifiably insane by general medicine. There is just no way to keep this label out of your file most times. I think it's horrid, but the bitter truth. I pray someday we all get the respect we deserve.
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feelfit
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The Physiatrist that I saw just measured functionality. Physical functionality. As I recall, I was asked to do a lot of bending and other things that were measured with various apparatus...degrees of movement etc.

They then wrote a full report with all of these findings. It was very helpful.

There are not many left in MI. they mostly work for disability evaluations. The one that I used was named McGill. Don't know if he is still practicing, but he was very patient oriented and not for the insurance co's.

Good luck in whatever you decide.

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seekhelp
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Thanks. The bottom line is on any given day, I just have many episodes of extreme fatigue and other neuro symptoms. It's dehabilitating. Most days, a walk from the car into a store is enough to do me in. I can walk very, very short distances in the house such as 5-20 feet, but any prolonged activity destoys me. It sounds dumb, but something like getting up to go to a printer, driving, and other stuff I thought was a joke before really wear me out.

Unfortunately, these are reality in my career and there's no way to be functional unless allowed to sleep in the middle of the day, can get a ride there, and that's just the start. I have many times where I simply cannot function. What's one to do?

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