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#1 | ||
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Junior Member
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Kitt, I am not sure I understand what you mean when you wrote "If indeed you have CMT, that would not be the case."
Could you please explain. i assume you are referring to my post regarding my drop foot. Just to further elaborate, the neuropathy was developing slowly prior to the drop foot, although I did not realize it at the time. After the drop foot was resolved, the neuropathy then progressed over the course of the next 9 to ten months, which brought me to the neurologist who then evaluated my condition and diagnosed my PN. Since she eliminated the other common causes of PN she concluded in her report that she suspected genetic PN. |
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#2 | |||
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Wisest Elder Ever
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I think I know what Kitt will say..... so I'll let her handle that question.
Here is a list of the tests to determine if someone has PN.... It is by Dr. Latov from New York, who is an expert on them. So check out your tests and see if any have been missed: http://www.questdiagnostics.com/test...ripheralNeurop If you get diagnosed too soon with a hereditary PN, without confirmation by DNA testing...you may close doors to healing or reversal or stopping progression that exist. You still have not shared with us, what other drugs you take, and your test results. It is your choice whether you choose to do so. But please understand that doctors often do not understand neuropathies well. This forum is filled with stories of doctors who dismissed the poster with a premature diagnosis of idiopathic when more could have been done. Some things are up to you, as well... you need to become proactive in your own PN experience. You can choose not to, of course. Quote:
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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#3 | ||
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Junior Member
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OK, here are the meds I take:Ramipril-5mg. twice a day; Tamsulosin-0.4mg. once a day;Simvastatin-20mg. once a day( I have discontinued this) and now take Red Rice Yeast instead);Omeprazole-20mg. once a day; Alprazolam-1mg. at night to help with sleep; Plavix-75mg. once a day; Gabapentin-300mg. at night for foot pain.
I also taker the following ; Resveratrol-500mg once a day; Iron-65 mg. once a day; Glucosamine-Chondroitin-1,500 mg once a day, and a multi-vitamin/mineral tablet once a day. During my initial visit to my intern this may, he did the following blood tests: HGB AIC-result 5.0;TSH-Result 1.1671;Anti-Nuclear Antibody(ANA)-Result <1:40NEG;Ultra Sensitive CRP-Result0.29;ESR-Result 8;Vitamin B12-Result 821. During my visit to the Neurologist in last August, she did additional blood work. She told me it was all negative. I am in the process of getting a copy of the results. I am also now taking two capsules twice a day of the Neuropathy Support Formula, which I plan on trying for 3 or 4 months,and Ubiquinol QH Absorb, reduced form Co-Q10, 100mg. capsule twice a day. If you need anything further, please let me know. I will very much appreciate your further comments on my condition. Thank you. |
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#4 | |||
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Wisest Elder Ever
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Okay, thank you...that is helpful.
Red Yeast Rice contains statin type molecules. Depending on the brand it is spotty in effect. But all of them have lovastatin in some concentration, as the rice is a source of it naturally. http://en.wikipedia.org/wiki/Lovastatin I am unsure if you are receiving therefore enough to make a difference. Now, can you tell me why you are taking the iron? Did the doctor tell you to? The reason I ask is that iron is not recommended unless your blood work says so. Anemia or low hematocrit. Men's vitamins do not typically contain iron, because it can accumulate and cause damage to the heart. Chronic use of Prilosec... has been shown to affect these nutrients: B12 folic acid calcium magnesium zinc iron absorption Your B12 is still good, but I'd keep an eye on it, because eventually you will use up your stored B12 from the liver (up to 5yrs worth) and then become low. B12 is broken out of protein food, by acid and by removing that, the B12 cannot be absorbed any more. Proton pump inhibitors also now have the warning about osteoporosis risk because they block calcium absorption too. Ace inhibitors for blood pressure taken for long periods also impact zinc, and so does the Prilosec. Low magnesium can lead to many issues with nerves. So I'd consider using a good magnesium supplement like SlowMag (available at WalMart) twice a day. Look at your multivitamin and check if it has zinc. That may be all you need at this point. If you have bleeding gums or sores that don't heal fast, or losing more hair than normal consider a zinc supplement. OptiZinc is the nicest with few GI side effects. Taking that neuropathy formula... you should do this on an empty stomach, so the B12 and ALA will be absorbed properly. If you don't do this, you may lose that value for those nutrients. I am going to digress a minute... about the rampiril: This ACE inhibitor is the only one in that family that can cause liver damage. So I hope you are getting liver tests regularly with your check ups. http://en.wikipedia.org/wiki/Ramipril and http://www.ncbi.nlm.nih.gov/pubmed/14567716 As a suggestion lisinopril, is much easier to tolerate in the body, and is not metabolized by the liver at all. So consider this as a possible intervention for you at another time. I, myself, switched to lisinopril years ago after learning about how much better it can be than some of the other drugs in that family. Now, chronic use of Xanax or other benzodiazepines can lead to more symptoms of PN... this is because tolerance occurs quickly and the drug wears off (and Xanax is fast acting anyway) and when it does, the tingling etc starts as part of what is called a mini withdrawal. It may help you fall asleep quickly but by morning you will start to have the withdrawal, and hence peripheral symptoms. If you can discuss changing your sleep medication to melatonin, or Ambien or any non-benzo drug, you may see some improvement there. Xanax must be tapered off carefully if you have used it for a long time. If you choose to do this, with your doctor's approval, you may see increased PN symptoms for a while. (that is the withdrawal symptom). Benzos have effects on nerves...they are used sometimes as an anticonvulsant is used in seizure patients. Often they are given for that reason. Withdrawal therefore is going to show excitation of nerves to some degree. So consider this. Withdrawal and "mini" withdrawal is explained here: http://www.bcnc.org.uk/howtowithdraw.htm Quote:
Benzos are good for the short term, but long term one can get into a negative cycle, with them wearing off, and causing side effects. Xanax is the fasting acting one so the most noticeable, in this regard. So you may have to think about this and discuss a change in bedtime sleep induction that will not be a benzodiazepine. That is all I can see for now. It is more than I thought would be a potential problem for you. Here is a site that explains drug nutrient depletions. People taking chronic meds, can benefit from understanding how RX drugs impact our chemistry in ways not well attended to by doctors: http://www.chiro.org/nutrition/ABSTR...orticosteroids I have two reference books on this subject that I consult, which are more complete than the online lists. The Side Effects Bible by Dr. Vagnini MD And Drug Induced Nutrient Depletion Handbook by Ross Pelton RPH, PhD, CCN and James LaValle, RPH, DHM, NMD, CCN Ernest Hawkins RPH, MS Daniel Drinsky, RPH, MS 2nd Ed. (out of print at this time). Quote:
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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"Thanks for this!" says: | RonJ (10-22-2012), Sallysblooms (10-22-2012) |
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#5 | ||
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Grand Magnate
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Quote:
There are many, many kinds/types of PN and some are genetic as well. I hope you find an answer.
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Kitt -------------------------------------------------------------------------------------------------------- "It is what it is." |
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#6 | ||
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Magnate
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--is that yes, foot drop will not be eliminated by surgery in those whose cause for it is something systemic, such as CMT, another hereditary neuropathic process, or even a condition such as diabetes (and there are some people some people with diabetes whose de-enervation has progressed to the point that their motor functions are affected and they show foot drop; this is not uncommon in conditions such as CIDP, either).
But, if the foot drop is caused by nerve compression at the lumbosacral nerve roots, or if the compression is farther down the tracts of some of the long nerves of the leg, proper surgical technique might relieve the foot drop, if it is not of too long standing (e.g., the compressed nerves have not been damaged severely over a long period of time). The Wikipedia explanation of this is actually pretty comprehensive: http://en.wikipedia.org/wiki/Foot_drop |
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"Thanks for this!" says: | mrsD (10-22-2012), Susanne C. (10-22-2012) |
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#7 | ||
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Junior Member
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Yes, that was my case. Compressed nerve, which was resolved with surgery.
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