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-   -   Back home from Johns Hopkins (https://www.neurotalk.org/peripheral-neuropathy/148139-home-johns-hopkins.html)

antonina 04-08-2011 12:14 PM

Back home from Johns Hopkins
 
I am so happy I went! I learned more in a 1 hour visit with the neuro than I have learned in 12 years of looking for answers in NYC

I hope you will find the following info useful for your own PN issues. Here goes:

1) having more than 1 cause of PN has a synergistic impact, ie, having chemo/toxic PN, combined with diabetes and very high triglyceride levels amp up the sx and the nerve damage. Here's his explanation: hypothetically, if diabetes is a 2 and chemo damage is a 2 and triglyceride damage is a 2, it does not add up to a 6. It will add up to something off the charts because all 3 causes work synergistically.

2) newest studies show that aerobic exercise performed at least 5x per week will stop the progression of PN. The chemicals produced during exercise help to heal the nerves!!

3) he suggested I take a statin drug to reduce my triglyceride levels. He assured me a statin will not worsen my PN.

I do not know the results of the skin punch biopsy yet. I'll post them when I get 'em.

I wish there were a NY equivalent of a Johns Hopkins. I am especially grateful to Nide (Bob) since without his posts, I would not have known about JH's excellence. And of course, without this forum I would not have had access to valuable support & information.

mrsD 04-08-2011 12:18 PM

There are posters here who have developed PN from statins.

antonina 04-08-2011 12:41 PM

Quote:

Originally Posted by mrsD (Post 760396)
There are posters here who have developed PN from statins.

That's exactly why I protested when he said to take one. He reassured me that it would not add to my sx. I guess the only way to find out is to try it...but I absolutely do not look forward to more drugs.

I think I will also research a non-statin way to reduce triglycerides. There must be some supplement or combo thereof that has worked.

Dr. Smith 04-08-2011 02:33 PM

Quote:

Originally Posted by antonina (Post 760404)
I think I will also research a non-statin way to reduce triglycerides. There must be some supplement or combo thereof that has worked.

There are certainly dietary and lifestyle ways; the aerobic exercise is one of them. I've cut out all the nasty carbs, and that's gotten mine down where the PN neuro had to shut up about it (shoulda seen the look on his face!)

Doc

mrsD 04-08-2011 02:46 PM

The statistics continue to mount.... this guy obviously likes business. Either that or he has major stock investments with those companies making statins.

http://www.statinanswers.com/effects.htm

Quote:

Some researchers estimate the 1 in 10 people who take statin drugs will experience a mild form of neuropathy where the symptoms may be a feeling of tiredness, difficulty in arising from a low chair or getting out of bed, shortness of breath or difficulty walking.

Small countries like Demark or Iceland are great for studying medical conditions. Because the population is genetically similar as opposed to the vast melting pot of the United States, it is easier to conduct a controlled study. A famous Danish study of neuropathy as a side effect to statin use concluded that an individual who is a long-term user of statin drugs has anywhere from 4 to 14 times greater risk of developing peripheral neuropathy than a person who does not take statin drugs. Typically, long-term use of statins is defined as 2 years or more but neuropathy can occur even after just a few days of use in a susceptible individual.
another:
http://www.suite101.com/content/stat...effect-a221061

Guess I won't be going to JH any time in the near future!

echoes long ago 04-08-2011 02:59 PM

as far as the exercize goes, of course if you are able to exercize doing so will benefit you in many ways, pulmonary, cardiac, circulation etc. That being said, many posters on here over the years have been runners, cyclists, body builders, mountain climbers, skiiers etc. and the exercize that they did did not prevent them from getting PN. Will it help to stop or even reverse the damage being done by pn, probably for some, maybe for others and not for the rest. Is exercize a treatment for PN?, i dont buy it.

mrsD 04-08-2011 03:23 PM

There are safer ways to lower triglycerides.

Fish oil is one.

What is your triglyceride reading? Do you know what it is?

Really high numbers, can be controlled by diet as well.
http://www.webmd.com/cholesterol-man...rides-overview

mrsD 04-08-2011 03:47 PM

Just so you know:

My doctor pushes statins on me every visit. My answer is always the same. She just logs in my file I have rejected the medication. This is a liability issue, not a medical one IMO. In fact I typically get lower cholesterol readings with metformin (which I just restarted) and she pushed them again before I even had the tests.

Statins for older patients increase hemorrhagic strokes. This is a given and in studies. Do you want that risk?

Any doctor pushing statins on a person with multiple causation PN.. already... needs a rethink. Don't spend your money on this person!

Just read what is out there on statins now. Each day the information stacks against them. Not the reverse. And the most impressive studies come from nonAmerican sources. That should tell you something in addition.

Dr. Smith 04-08-2011 03:58 PM

Quote:

Small countries like Demark or Iceland are great for studying medical conditions. Because the population is genetically similar as opposed to the vast melting pot of the United States, it is easier to conduct a controlled study. A famous Danish study of neuropathy as a side effect to statin use concluded that an individual who is a long-term user of statin drugs has anywhere from 4 to 14 times greater risk of developing peripheral neuropathy than a person who does not take statin drugs. Typically, long-term use of statins is defined as 2 years or more but neuropathy can occur even after just a few days of use in a susceptible individual.
Ummm... That would suggest to me that Danes have a 4-14 times greater risk (that seems a wide variance to me), but not much about people of other ethic origins, especially mongrels like myself (with no Danish whatsoever). I think I'd rather see numbers on that vast melting pot.

Doesn't mean I'm arguing for statins; I just have a problem with the guy's premise.

Doc

mrsD 04-08-2011 04:08 PM

This is what happens with statin side effects. They are blamed on something else when reported to the doctor, or ignored.

http://medicationsense.com/articles/...cts012108.html

This also happened with SSRI drugs. When patients brought concerning side effects to their doctors' attention...they got an increased dose! This happened with children!


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