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Brian Paul 10-06-2007 01:14 PM

Why Me? or You Are Not Alone
 
Hi Jason and other responders,
By all means, do not let doctors minimize blood sugar levels. Not to alarm you, but I am now in a fine pickle because I followed a doctor's uninformed dictates and pooh poohs. I now have serious problems as a result of ignoring my problems since I wanted to believe that the doctors know best.

This is just not true. Doctors more and more have their specialized interests/focuses and don't keep up with the general growth and change in all things medical. The number one issue is attention to medications. The number two issue is lack of attention and willingness to investigate beyond their comfort zone. My doctor was very well-versed in many areas and yet knew nothing about diabetes. My three month average tests were normal, yet my blood sugar was ping ponging and would (like yours) be high and very low. Since the numbers indicated no diabetes, I was actually scorned for being paranoid and concerned about my condition, and told not to waste my time going to a diabetic specialist.

Huge mistake. All of the things I have been experiencing off and on over the last few years...extreme dryness of skin, exhausted and/or sweating after meals, painful feet, legs, arms and hand areas, have come home to roost.

I don't even have that high of blood sugar levels, and yet have major pain, and neuropathy. I, literally over the period of a few weeks, became very ill, and now know that it was all about my blood sugar. I am on medication currently, but suffering constantly with pain due to the neuropathy.

Mine is a story of neglect, and consequences which I hope can help others follow through with their own personal care, based on what they know is going on with their bodies, and not be dissuaded by a doctor or group of doctors, who, in all likelihood, are speaking out of ignorance and inexperience.

In closing, I think of many years ago when I was lucky enough to be sent to Mayo Clinic due to what I thought was a hasty doctor's diagnosis. How it works there is...you have one doctor who sends you all around the clinic for tests based on your symptoms. No stone was (and hopefully they still operate like this) left unturned in the testing. The tests were not based on what they thought you might have, but on all of your systems. Then the one doctor reads all of the reports and presents a well-informed diagnosis to you. In my case, it has saved my life on two occasions (not exaggerating).

I still want to trust doctors, because you can't handle your medical care without them. Finding the right one is no different than finding a mechanic you can trust.

Alkymst 10-06-2007 01:43 PM

Good advice
 
Jason,
You've come to the right place for frank discussions of SFPN, prediabetes, polyneuropathies, etc. There is a wealth of info on this site and as people have noted much of it is not generally known and or recognized. I looked up your doc @ UPenn, I'm not familair w/ him but I also go to UPenn and my experience has been much different and more positive. If you seek a second opinion I'd push hard for Dr. Mark Brown, the dept chair - his specialties are diabetic and prediabetic SFPN.
If you want pm me and we can discuss in more detail offline. I'm sorry for your plight PN sucks at best but it's nice to have someone in the same general area to talk with.
Best of luck to you.
Alkymst

Dakota 10-06-2007 02:05 PM

I think that the only thing to do when a doctor treats you like that is to ditch him and try another. It is very stressful (for me) to try a new doctor out, but that is really the best option. I never go back to a doctor that I am not satisfied with.

dahlek 10-06-2007 02:08 PM

Jason, heed all who have posted above me....
 
and have faith that we ALL have been through the FOOD PROCESSOR called 'diagnosis'.
Two things I cannot underscore here are that: 1- NEVER EVER SAY: I learned on the Internet! Say that about 17 thousand times...rather said...I read at the NINDS website about X & Y tests being the norm...etc. Or from Hopkins or Cleveland Clinic or MAYO! That will make your docs know/KNOW you are reading from credible sources about SPECIFICS! and 2- SECOND OPINIONS! They are worth their weight in GOLD...I totally dumpted neuro #1 for #2- attitude and communication are essential for dealing with this STUFF and #1 did NOT have any tact AT ALL...nor empathy, nor [after I found the folks here] any real knowledge of this portion of the neuro world. I got a 2nd - 2nd opinion of #2 neuros' diagnosis which took things a step faster/agressively in the diagnostic quarters and I am grateful -ever so much for that! I've also seen 4 other neuros in relation to my issues and things are pretty much confirmed about ME. IF your insurance allows it, DO it...A second [or more] opinion office visit is CHEAP compared to the damage that could happen from improper/prompt diagnosis/treatments.

Read the 'Stickies' at the top of the page, click onto the links to other sites/papers/opinions etc. [in blue] and read lots of prior posts here. That way you will get a pretty solid handle that we are not a bunch of 'poor-me' back patters. Each of us has been thru that purgatory called Neuropathy to many different degrees and pain levels... I for one, not only 'feel' for you, but with you! And-that you got such a turkey of a first neuro, well, it really steams me! THAT is a doc that better get into THIS century and quickly! Nuff said? :hug:- and now get to work on getting a good doc and getting what YOU NEED! - j

mrsD 10-06-2007 02:19 PM

Hi Jason...
 
Welcome to our board.

After reading your first post, I have some questions.

Did you have that glucose tolerance test at the same time you were on the Risperdal treatment?

How old are you?

How long were you on Risperdal? Long term use of Risperdal has been shown to cause pituitary tumors and increases in prolactin which is a hormone.

Are you overweight with abdominal fat? Risperdal causes weight gain.

When you had that GTT, you had both insulin and glucose run with each
blood draw?

Do you rest on that elbow alot due to life style habits? Work tasks?

Do you eat whole foods, and tend to be careful to keep healthy food habits?

What you do, what you eat, and what drugs you take or have recently taken, can impact alot on the nervous system.

Brian 10-06-2007 06:47 PM

Quote:

Originally Posted by Jason (Post 155324)
Brian, thanks for the info. That site says that QST uses temperature to test the small fibers and vibration to test the large fibers. He didn't use QST but he used hand held tools to test temperature and vibration and asked me for feedback. My legs were positive on the temperature and not the vibrations.

I don't understand how his test was positive for small fiber peripheral neuropathy, which is what I have, but yet he reported back to my doctor that he found no signs of it.

Help me with this. I have had an impossible time getting doctors to help me with PN the last couple months. Is there a medical record that doctors can access for information on patients. Mine would say "hypochondriac" for sure. I don't think there is such a record or anyway for doctors to get that information. Does anyone know if there is something like this? If there is I am SOOL.

By the way here is the neurologists website: http://www.med.upenn.edu/apps/facult...hp/g324/p11842

"Description of Clinical Expertise:
The diagnosis and management of peripheral neuropathies."

I also had a hell of a time convincing doctors that i had real problems, i went to 6 GP's none of them had a clue, one rheumie, that couldn't find anything wrong and one Professor of Neurology, who done a Nerve Conduction test and said, " i showed no signs of PN,[ nerve conduction only tests for large nerve damage] another idiot that actually said to me " i don't think you have burning feet, the test [NC test] proves that :mad:, it was the Internet that helped me find out what was wrong, in particular the PN forum i stumbled across in my desperate search for answers, the experts here pointed me in the right direction, thank god, so i insisted that my local GP send me to a PN expert which i eventually got to see [ after a battle with him ]and he diagnosed "Prediabetes" as the cause after a 3 hour Glucose tolerance test,
& i was running real low on B12 as well.
The reason why your feet are burning is that the small nerve's are damaged and are sending confused signals, your small nerve job is to sense heat, cold & pain, a clear indiction was when you felt that neuro's tool feel differant above your knee, he should have picked that up and sent you for a QS test.
I have to get going , pretty busy day today, but others will explain more.
Brian :)

glenntaj 10-06-2007 08:20 PM

Hey Jason--
 
--sorry about several of those links not working with the ellipses; I copied them from another post on this board in which they did seem to be working.

Let's try again:

http://intl.neurology.org/cgi/content/abstract/60/1/108

http://www.ncbi.nlm.nih.gov/sites/en..._uids=16448668

http://www3.interscience.wiley.com/c...TRY=1&SRETRY=0

http://www.ncbi.nlm.nih.gov/sites/en...d_AbstractPlus

Couldn't get the original link for the fifth one, for reason, but these four should provide a basis if you ever need one.

Here's another link:

http://www.ncbi.nlm.nih.gov/sites/en...RVAbstractPlus

And I think Brian Paul's post is a very cogent explanation of why so many of us have had to go through the diagnosis merry-go-round that Dahlek talks about.

Still, an informed patient who is willing to challenge a doctor for not looking beyond the borders of the box is still in a better position, even if the doctor's hackles get raised, than an uniformed patient who just unquestioningly follows every physician pronouncement. It is absolutely vital that one always gets one's test results, that one examines them closely, and that one not feel intimidated in suggesting certain other tests to a physician or in contributing to the running of a protocol. Good doctors do not mind an informed patient--most rather appreciate it. Those that object and take the "I'm the expert--just do what I say" route are generally not only forgetting that we are the ones who live in our own bodies, and so are, in the end, the final experts on them, but are engaging in an egoistic and obvious self-justification.

Silverlady 10-06-2007 08:40 PM

Living proof
 
Glenn's statement about being willing to challenge a doctor is the beginning of how I was finally diagnosed. The neuro I was using at the time basically had given up on me. Tests were all negative that he ran. But I was in terrible pain with symptoms of small fiber sensory neuropathy. I had been diagnosed with Sjogren's Syndrome previously. Thru the help I received on this board and my own research, I was able to print off a series of applicable documents that showed the relationship of neuropathy to Sjogren's Syndrome. I mailed them to the neuro who had given up along with a cover letter telling him that I had spoken to his nurse and she said she didn't think he'd mind receiving some current literature relating to the problem (which was true).

The neuro called me on a Sunday afternoon. Told me he'd read my research and he was referring me to one of his associates who was a neuromuscular specialist. She ran a few tests of her own and told me she agreed with the research I'd found. But we had no way to prove it. She decided to refer me to Mayo Clinic. I eventually received an appointment with the help of a close physcian friend. Mayo diagnosed me with Small Fiber Sensory Neuropathy caused by Sjogren's Syndrome.

It was thru my being willing to challenge the doctor and educate him that I finally received the diagnosis. I continue to educate my neuro and my rheumatologist about the devastating effects of Sjogren's on the nervous system. They are both willing to learn. I feel thru my efforts to educate them both, I am perhaps helping someone else with this illness.

Billye (didn't mean to write a book) :p

mrsD 10-07-2007 08:35 AM

your drug use...
 
Risperdal may be the culprit. Please answer the questions I posed a bit earlier so I can understand your predicament better. :)

Also I just learned that the new fats included in food, (to effect the trans fat
removal that is currently in effect) called interesterified fats on labels,
can raise blood sugar 20%!

http://www.sciencedaily.com/releases...0116131545.htm

These would be in restaurant foods, cakes/cookies, some processed food, some peanut butters.

Jason 10-07-2007 09:40 AM

Quote:

Originally Posted by Dakota (Post 155405)
I think that the only thing to do when a doctor treats you like that is to ditch him and try another. It is very stressful (for me) to try a new doctor out, but that is really the best option. I never go back to a doctor that I am not satisfied with.

To say I am not satisfied is an understatement. I AM FURIOUS. He basically said that I am lying about my symptoms.


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