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Old 10-21-2012, 02:43 PM #11
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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:
Originally Posted by RonJ View Post
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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Old 10-21-2012, 03:57 PM #12
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Quote:
Originally Posted by RonJ View Post
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.
All I am saying is that as far as I know you cannot eliminate foot drop with surgery for someone who has CMT. That is as far as I know.

There are many, many kinds/types of PN and some are genetic as well. I hope you find an answer.
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Old 10-22-2012, 06:20 AM #13
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Default My understanding--

--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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Old 10-22-2012, 06:47 AM #14
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Quote:
Originally Posted by mrsD View Post

Kitt and Susanne C post regularly about their CMT. But we have had few others with a definitive diagnosis of it here, inspite of the large numbers of posters and visitors over the years. Many CMTers begin in childhood, and that may be one reason.
I have had symptoms since childhood/adolescence, which went unnoticed because I was largely neglected as a child and had no contact with my biological father's family, from whom I inherited the CMT. I have a half sister who has worn braces since childhood for it. I could not run, roller or ice skate, dance, or even play kickball or simple ball games because of my lack of coordination. I was made fun of at school and called lazy by my mother. When I was diagnosed, and my childhood was a big factor in that, it explained so mny things. I actually felt better about myself. I wasn't too lazy to do all those things, I couldn't do them.
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Old 10-22-2012, 09:28 AM #15
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Yes, that was my case. Compressed nerve, which was resolved with surgery.
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Old 10-22-2012, 09:53 AM #16
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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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Old 10-22-2012, 10:38 AM #17
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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:
Switching to a long-acting Benzodiazepine. With certain short-acting benzodiazepines it is not possible to achieve a smooth decline in blood and tissue concentrations. These drugs are eliminated fairly rapidly with the result that concentrations fluctuate with peaks and troughs between each dose. It is necessary to take the tablets several times a day and many people experience a "mini-withdrawal", sometimes a craving, between each dose. For people withdrawing from these potent, short-acting benzodiazepines it is advisable to switch to a long-acting slowly metabolised benzodiazepine such as Diazepam. The switch over process needs to be carried out gradually.
While your use is not heavy, or problematic in the habituation sense, your body is still in a mini-withdrawal just a few hours after you take that Xanax. Your nerves are telling you so, I believe. The gabapentin is possibly masking some of this, and it too is an anticonvulsant. (dampens nerves).

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:
Originally Posted by RonJ View Post
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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Old 10-22-2012, 11:36 AM #18
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I also forgot to add:

As you take the CoQ-10 supplement, you may find that your current dose of blood pressure medication is too strong.

Ideally taking your own pressures at home will reveal this.
But if you don't have a cuff, then report and dizziness on standing or feelings of faintness etc to your doctor.

When CoQ-10 is low blood pressure can go up. As this is fixed,
the pressure may improve and you may need a dosage adjustment of your medication.
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Old 10-22-2012, 12:47 PM #19
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Too bad the 2nd book is out of print. I will have to get the other book.
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Old 10-22-2012, 02:04 PM #20
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Mrs D, thank you for your very helpful response. If I may, I have a few questions for clarification regarding your observations.

First, as to the Red Yeast Rice. Are you suggesting that I increase the dosage, or that I stay on the statin, or what?

I am taking the iron because I have a long history of anemia, but it is pretty much optional as far as my doctor is concerned. I am monitored twice a year with blood work so I don't really have a worry about it or the ace inhibitor.

I will take your advice and start taking the magnesium supplement you recommended.

Your observations about Xanax is interesting. No one, including my doctors, have mentioned that. If it has the potential of increasing my PN symptoms then I will discuss with my doctor getting off it.

My multivitamin has zinc, but I have noticed hair loss on my legs, and sores not healing as quickly as they should, so I will also start the zinc supplement, as well.

I do know about taking the Neuropathy Support Fomrula on an empty stomach.

Lastly, as to your caution about watching my blood pressure, I do have a cuff, and although I do monitor my pressure periodically, I will start to do so more frequently.

Thanks again. And, any additional advice you may have to help manage or resolve my PN will, of course, be most welcome.
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