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ATTN DOCTORS PF VS PN

Posted by Bev on 5/01/03 at 08:08 (117522)

ATTN DOCTORS: I had asked this question while you were away at convention, and I will try to state it again . I was wondering if a chronic case of PF could 'bring on' a case of PN or visa versa or how close are the symptoms that the doctors are not able to diagnose the difference? So many of us on the board have trouble getting proper diagnosis and we have the symptoms of both, however the nerve conduction tests show no large nerve damage so the neuro says ' you're okay, goodby', and you continue to still have problems, and the ortho says PF, take pills and rest feet, and we still are in terrific pain.Our doctors have all written us off, we can not work(at least some of us who were nurses and on our feet all day), we are depressed, we are hung out to dry. Why do they have such a hard tine diagnosing us? Any advise you can give will be so appreciated. Thankyou very much.

Re: ATTN DOCTORS PF VS PN

Bev on 5/01/03 at 08:31 (117525)

ATTN DOCTORS: (CONT) Another part to the question I was asking on PF and PN - I also had a bone scan and that showed PF and the neuro ruled out TTS when he did the nerve conduction tests. Connective tissue disease lab tests were slightly positive. I was on Neurontin , however it really took away what little brain function I had so I was switched to Topamax, have you heard of using Topamax for nerve pain? My daughter is on it for migranes.I was put on it for the burning on the bottoms of my feet. When I first started with all of this I had the numbness, burning, shooting electrical pains, and all, now on the Motrin 800 tid and the Topamax (was Neurontin) I do not have that as much.I have had this for about 18 months now. Thankyou for 'listening to my ranting and ravings'. Bev

Re: Docs, please answer Bev..and while we have your attn:...

Pam S. on 5/01/03 at 10:50 (117545)

Dear Docs.
There are many of us with these symptoms Bev. is describing. Do you think a Neurontin cream would help?We have located a compounding pharmacy that custom makes this type of thing. I would love to know your opinion on this. Bev, I am honing in here but I hope you can benefit from this too. It sure would beat taking so many meds.
Also, I have TTS but with a clear MRI. Would you NEVER do surgery in this case because there is only a 50% chance it would help and then it might come back in a number of years since there was no mass or varicose vein in the way? That is what my dr. told me this week and I would love your opinion too.

What are we supposed to do? In this day it seems so crazy we stay in pain. Bev, is right, we get no great answers. Please, answer the best you can. Thank you sooooooo much. I hope you do not mind I added to your questions Bev. Thinking of you Pam

Re: ATTN DOCTORS PF VS PN

Scott M. on 5/01/03 at 10:55 (117547)

Bev, I would love to know this answer. I have had pf in both feet and now have tts in both feet and am trying to decide whether or not to have surgery!

Re: ATTN DOCTORS PF VS PN

lara t on 5/01/03 at 15:04 (117566)

I was told I had PF in both feet for a few years - until I got to a doctor who recognized TTS (which technically could be considered a form of PN as it is nerve pain in one of the peripheral parts of the body, although generally not referred to as PN). I never did have PF, I had TTS all along. It's not uncommon for one to be mistaken for hte other. PF is much more common, and there is similarity of symptoms, partiuclarly if you aren't familiar with TTS so don't catch the distinguishing characteristics. The (large doses of) ibuprofen helped until my stomach rebelled!

A negative NCV test doesn't mean you don't have TTS. It's not a very sensitive test.

My podiatrist said that most people who have had PF for over a year with treatment, probably have TTS.

If you've had PF that doesn't respond to treatment, I've try the non-invasive and minimally invasive TTS treatments to see if they help.

Re: ATTN DOCTORS PF VS PN

Bev on 5/01/03 at 17:59 (117580)

lara
I thought TTS was near the ankle area and I do not have any problems there at all, just the darned ol' foot, the whole foot and nothin' but the foot (heel,arch,ball).

,

Re: Docs, please answer Bev..and while we have your attn:...

Bev on 5/01/03 at 18:06 (117582)

Pam,
We have given the doctors a lot to think about tonight. These are really some serious questions we all would love to have answers to very much. We are searching so much for help for our poor battered sore footsees :((

Re: ATTN DOCTORS PF VS PN

Sharon W on 5/01/03 at 18:42 (117589)

Bev,

Some people with TTS have a lot of pain in the ankle, but not all of us. For me, most of the time the only ankle pains I had were the shooting 'electrical' or 'zapping' type, and those tended to shoot further up my leg a lot of the time. My pain was mostly in the foot, especially the arch and sole of my foot, but also sometimes in my heel.

You can see why this stuff is so complicated to figure out!

Sharon
.

Re: ATTN DOCTORS PF VS PN

Bev on 5/01/03 at 18:48 (117591)

OHHHHHHHHHHHHHHHHH I SEEEEEEEEE , Thanks , How confusing :D

Re: ATTN DOCTORS PF VS PN

Dr. Z on 5/01/03 at 19:58 (117600)

Hi

Here is my take on this. PN is very hard to treatment period. Sometimes the cause of your pain is PN and the EMG/Nerve conduction tests are normal, but still pain.
The PN gets worse and still no abnormal results. It is my opinion that
it takes pn to progress before there is any positive EMG/TESTING.

PN is very hard to test and that is the problem. We have no great treatment for PN

I have seen what seems like pf and no relief and then finally it turns out to be pn but the treatment still is poor. But we keep trying trying and trying to help the patient. Very frustrating for both doctor and patient

Re: ATTN DOCTORS PF VS PN

Bev on 5/01/03 at 20:23 (117602)

Dr. Z. ,
The reason I am so concerned is that I am being treated for PF and all the tests point to PF ., however many symptoms that the doctors just dismiss away point to PN . But if I do also have PF will ESWT help ? I do not know if I should pursue ESWT or not.

Re: ATTN DOCTORS PF VS PN

Sharon W on 5/01/03 at 20:28 (117603)

Bev,

Think of this one for a moment. Neurontin and Topamax are anticonvulsants, but when they're prescribed for pain, they're usually prescribed for NERVE related pain. If Topamax is helping you, chances are, what it's doing is helping to relieve nerve pain.

Sharon
:(PIPE)

Re: ATTN DOCTORS PF VS PN

Bev on 5/01/03 at 20:30 (117605)

Dr. Z,
Also , do many people have PF and PN both ? Does one usually follow the other? Does one kind of 'cause' the other? What one usually starts first?

Re: ATTN DOCTORS PF VS PN

Bev on 5/01/03 at 20:35 (117607)

Sharon,
Right, Both have relieved the 'burning' I have had on the bottoms of my feet. But PF also has that kind of pain, right?

Re: ATTN DOCTORS PF VS PN

Pam S. on 5/01/03 at 20:37 (117608)

When my foot burns, If feels like someone is SQUEEZING my foot. I noticed Sharon said that is one of the symptoms on PN. I also have PF and TTS. I am just about to give up. I am trying this cream and if that does not work I am giving up and going to just live my life the best I can. One could lost their mind over this madness. I am sorry I am having a bad day. Bev, at least that surgery is not invasive so that if it does not work you will be no worse off. But I know it is expensive.

Re: ATTN DOCTORS PF VS PN

Dr. Z on 5/01/03 at 20:44 (117609)

I believe that most are pf with some progressing to TTS and or PN. If it is at the insertional with First morning pain then we have PF anything else can be combination of both PN, pf . The history and examination is so
important and experience with seeing these cases

Re: ATTN DOCTORS PF VS PN

Bev on 5/01/03 at 20:48 (117610)

Pam,
You have PN and PF and TTS? Did you have the ESWT ? Did you have
the surgery? How do you survive with all of that to live with? Do you work? You did have TTS surgery at one time, right? Was that successful?

Re: ATTN DOCTORS PF VS PN

Dr. Z on 5/01/03 at 20:49 (117611)

IF you have trigger point insertional pain and the ultrasound shows edema with pf thickening and you have first step morning pain or pain at the end of the day or pain when you sit for anylength of time then ESWT is the choice. Any other combination can help but the first description is what doctors are looking for to cure pf with ESWT

Re: ATTN DOCTORS PF VS PN

Bev on 5/01/03 at 21:01 (117615)

So if I do have ESWT for PF and I also have PN the ESWT will not do harm to the nerves from the PN ?

Re: ATTN DOCTORS PF VS PN

Pam S. on 5/01/03 at 21:11 (117617)

Dear Bev:
Well, I had TTS release in 99 in my right foot. The burning is better in that foot but I NOW have PF in that foot thou i do not consider it severe. No first step pain just really tight and sore arches. Heel is fine. I had positive needle EMG. Yes the surgery did help but it STILL burns it is not perfect as I thought it would be. I was clueless at the time.

Stay tuned enter... left foot. Bad burning. Clear MRI have not had the EMG but after this Doc said she would not recommend the surgery if there is a clear MRI why should i have the EMG? Mild PF but who knows what is causing what burning. Burn Burn Burn which came first. it is a blur.

Have Not had EWST. the night splints help my arch feel more lose. The dr. does not think the PF is my main problem. Probably TTS. I pronate cannot tolerate orthodics. but am getting some relief from Lara's sock.

I do not work. I am a mom and a housewife. Busy life thou. Lots of entertaining with my husband, standing at parties. Would be a fab life if I could enjoy it. I am 49. I am going to New York on Sunday for three days. I cannot get excited because I am worried about how to walk everywhere. And all the women will have on fab. clothes and shoes. I am sorry I am whining. HELP I am grateful I am a nice person I am everything you want me to be. I am in pain HELP

Does Dr. Z or any other dr. on here agree if the MRI is clear you would not do surgery for TTS.? How do you help patients cope with burning pain?
Neurontin has helped.

I have fibro. THAT can also cause burning. Soooo I could lose my mind. My fibro in under control most of the time.

Re: I got out of line again: please read Dr. Z and BEV

Pam S. on 5/01/03 at 21:12 (117618)

I could use some help tonight see above

Re: ATTN DOCTORS PF VS PN

Dr. Z on 5/01/03 at 22:01 (117627)

The doctor is trying to make a more precise diagnosis with the help of the emg/nerve conduction study. Having a clear mri doesn't mean that TTS release won't help. Having a mass confirmed by mri does give a better outcome predication of your chances of a painf free outcome. The decision to do TTS surgery is based on clinical symtoms, history and the doctor's
ability to diagnosis and treatment this condition. I don't do the surgery but I am pretty good at making the decision to do this type of surgery

Re: ATTN DOCTORS PF VS PN

Dr. Z on 5/01/03 at 22:15 (117631)

Good question . No one knows. The Dornier Epos manuel states that the effect is unknown

Re: ATTN DOCTORS PF VS PN

Sharon W on 5/01/03 at 22:52 (117634)

Bev,

I'm on shaky ground here because I know that Neurontin (and now in your case, Topamax) have recently been prescribed for a couple of patients on these boards who were diagnosed with PF rather than a nerve pain condition. However, I think it's still true that these drugs aren't usually prescribed for the pain of PF, but instead for painful conditions like TTS or PN that involve nerve damage. Maybe they were prescribed for you because your condition involves chronic pain.

Anti-spasmotics aren't normally used for acute pain, as I'm sure you know, but sometimes they're used for chronic pain. (Chronic pain, even when it is not because of nerve damage, does cause abnormal changes in nerve conduction as time goes by, so perhaps that makes sense...)

Burning pain or tingling or numbness are typically associated with some kind of nerve compression or damage. So the question is, why does PF sometimes cause burning or numbness? I don't know. My GUESS is that the reason PF can cause a burning sensation in the bottom of the feet is that the swelling sometimes associated with PF can actually put enough pressure on some of those little nerves in the foot to cause nerve-type symptoms. But that is only a guess. Perhaps one of the doctors will give us an expert opinion.

Sharon
.

Re: ATTN DOCTORS PF VS PN

Ed Davis, DPM on 5/02/03 at 00:33 (117636)

Bev:
PN and PF are very different entities and the development of one of those entities is unlikely to affect the other. TTS, more specifically, can be a cause of heel pain and, as such, is more likely to mimick PF. Entrapment of the medial calcaneal nerve branches, even more than true TTS, manifests heel pain sometimes similar to PF. A good diagnostician should be able to differentiate such problems but it may require a specialist.

Keep in mind that PF is curable in the vast majority of cases. PN has numerous causes but about 90% of PN has one of the following causes: diabetes, hypothroidism, B12/folic acid malabsorbtion, alcholism, low back/nerve root pathology. It is the remaining 10% that can be vexing because there are scores or 'rarer' entities making up that 10%.

It is fairly simple to test for the major causes of PN. NCV/EMG is not a good screening test because it has poor sensitivity. Its value is in helping to find the focus of pathology because while sensitivity is poor, selectivity is good.
Ed

Re: ATTN DOCTORS PF VS PN

Bev on 5/02/03 at 06:57 (117642)

Doctors,

Thankyou ssooo very much for all of you help today, I really :D appreciate all of your help so very much, thank you so very much. You all are 0:)

Re: ATTN DOCTORS PF VS PN

Bev on 5/02/03 at 07:09 (117643)

Sharon,
Thankyou so very much for all of your help, you are such a wealth of great information :D . I am very pleased as to how well the Topamax is helping more now that I have gone up in dose as it was ordered to gradually do over the weeks. Now I am up to the 50 mg. bid and it is really helping the pain .I can function now for more than 10 minutes at a time :> Also when I get out of bed, I can actually walk instead of hobble in the morning now :) Again, Sharon, thankyou so very much for all of your help and information, I do not know what I would have done if I would not have found you all on the board, you all are so good to me >:D<

Re: ATTN DOCTORS PF VS PN

lara t on 5/02/03 at 07:17 (117644)

I've never had trouble with my ankles, and since my NCV test came back positive, there isn't much doubt I have TTS (although my doctor was pretty sure after hearing my history - but it took someone with a lot of experience with TTS to recognize it). My primary symptom was (constant) burning on the sole of my foot (from inner edge of heel to the ball of my foot) that didn't respond to treatment - except rest. Some people have a Tinel's sign, that I thnk is near the ankle, so I wonder if that is what you are thinking of. I've never had it so I'm not up on that part of TTS. I did have nerve pain on the dorsal side of my foot at its worst.

Re: ATTN DOCTORS PF VS PN

Bev on 5/02/03 at 07:35 (117645)

Pam S.,
Have fun in NY. I hope your feet behave themselves. It is so very hard on us when our hubbys and the people we are with want to go places and we can not do things as we are in pain or we are unable to walk there, it is so very frustrating :( While you are in NY will there be a lot of sight seeing? Will you have to stand at get-togethers? That Neurontin cream can not get to you fast enough girl, you need it for NY, right? Have a nice time :) Sounds like your hubby has a fun job that you get to travel and party a lot with him :) All my hubby gets out of his job is stress and heart burn :( He used to fly and travel some, but times are tight and that has been cut out. Thankyou for your help on my questions this week on the board, I really appreciate everyones help and assistance very much.

Re: ATTN DOCTORS PF VS PN

Bev on 5/02/03 at 08:19 (117647)

DOCTOR ED,
What is the ' fairly simple' test you stated for finding out if some one has PN if it is not the NCV/EMG test?

Re: Tinel's sign

Sharon W on 5/02/03 at 10:03 (117654)

Lara,

I had always showed (past tense) Tinel's sign in my right (surgery) ankle, but my ankle didn't normally hurt except when the Tarsal Tunnel area was tapped. If you show Tinel's Sign in your ankle, it means that when the Tarsal Tunnel area is tapped by someone who knows what they're doing, you feel one of those 'zapping' or tingling sensations shoot away from there (either toward higher up your leg, or toward your arch and foot).

Just as many people who really DO have TTS don't have abnormal nerve conduction tests, there are many people like yourself who have TTS but don't show a positive Tinel's sign. We are all different.

Sharon
.

Re: ATTN DOCTORS PF VS PN

Sharon W on 5/02/03 at 10:38 (117657)

Pam,

I know the feeling that you're describing -- that 'burning' feeling like someone is squeezing your foot. I believe that is nerve-type burning.

I didn't say so, but burning and numbness really ARE nerve symptoms, and I'm not sure how much of the burning and numbness that is blamed on PF is really caused by PF. Sometimes nerve pain is mis-identified or misdiagnosed as PF. :o As Dr. Ed said, below, 'TTS...can be a cause of heel pain and... is more likely to mimick PF. Entrapment of the medial calcaneal nerve branches, even more than true TTS, manifests heel pain sometimes similar to PF. ...to differentiate such problems... may require a specialist.'

I am more cynical than Dr. Ed is. It seems to me, differentiating between such problems may require a specialist who is ESPECIALLY GOOD AT DIAGNOSING, like Dr. Ed! :>

Sharon
;;)

Re: ATTN DOCTORS PF VS PN

Sharon W on 5/02/03 at 10:55 (117659)

Bev,

I don't know if you'll even see this before your appointment, but...

I posted this above, in response to something Pam said, but it was in a place where it's likely to get lost.

I didn't say so, but burning and numbness really ARE nerve symptoms, and I'm not sure how much of the burning and numbness that is blamed on PF is really caused by PF. Sometimes nerve pain is mis-identified or misdiagnosed as PF. As Dr. Ed said, below, 'TTS...can be a cause of heel pain and... is more likely to mimick PF. Entrapment of the medial calcaneal nerve branches, even more than true TTS, manifests heel pain sometimes similar to PF. ...to differentiate such problems... may require a specialist.'

I am obviously more cynical than Dr. Ed is. But it seems to me, differentiating between such problems may require more than just a specialist. It may require a specialist who is ESPECIALLY GOOD AT DIAGNOSING, someone like Dr. Ed!

Sharon
.

Re: ATTN DOCTORS PF VS PN

Bev on 5/02/03 at 12:37 (117664)

Where is Dr. Ed located , Sharon, Do you know?

Re: Bev, info on Dr. Ed

Sharon W on 5/02/03 at 12:50 (117669)

Bev,

He's in Washington State, near Tacoma:

Ed Davis, DPM
10116 116th St. E. #103
Puyallup, WA 98373
TEL: (253) 841-3668

Re: Bev, info on Dr. Ed

Sharon W on 5/02/03 at 12:53 (117670)

Bev,

You can also clilck on his link, at the top of this 'Ask the Foot Doctors' message board.

Sharon
.

Re: ATTN DOCTORS PF VS PN

Ed Davis, DPM on 5/02/03 at 13:06 (117673)

Bev:
One is testing for the main causes of PN: blood tests for B12, folic acid levels, glucose levels, levels of thyroid hormones - T4, T3, TSH.
Ed

Re: ATTN DOCTORS PF VS PN

Bev on 5/02/03 at 13:18 (117676)

Dr. Ed, Thankyou, maybe I will have this done again then if this next doctor thinks it is necessary, thankyou. Bev

Re: Bev, info on Dr. Ed

Bev on 5/02/03 at 13:23 (117677)

Wow, too far away for me, I was hoping he was in my back yard, haha.

Re: ATTN DOCTORS PF VS PN

Sharon W on 5/02/03 at 13:31 (117679)

Bev,

Did one of the doctors you've seen in the past actually order free T3 and free T4 tests? Many doctors will only order the TSH.

I know this because a friend just went through it: most labs have not yet adjusted their 'normal' ranges for TSH to reflect the new declaration by the American Association of Clinical Endocrinologists (AACE). According to the AACE, doctors have typically been basing their diagnoses on the 'normal' range for the TSH test. The typical 'normal' levels at most laboratories is in the 0.5 to 5.0 range. The new target TSH level according to AACE is now 0.3 to 3.04 -- a narrower 'normal' range which makes patients more likely to be identified with hypothyroidism.

Sharon
.

Re: Bev, info on Dr. Ed

Sharon W on 5/02/03 at 13:44 (117683)

Yeah, I have the same problem... I would go see him if I could figure out a way to do it (and to get my insurance to pay for at least part of it!)

Sharon
:(

Re: ATTN DOCTORS PF VS PN

Bev on 5/02/03 at 14:03 (117684)

Sharon,
I just looked at my labs and no, there is none of those on there. My last thyroid tests with T4 was in 1999 and they were normal and that was done in a routine screening with cholesterol and all. Maybe if this new doctor is really a caring doctor he will order labs, thankyou for the information. :) Bev

Re: ATTN DOCTORS PF VS PN

Sharon W on 5/02/03 at 14:29 (117685)

Bev,

There is a difference between the T4 test they used to do in the past, and the free T4. According to I. Ross McDougall, who runs the thyroid nuclear medicine clinic at Stanford, the free T4 test is more specific than the other T4 test. So it does make a difference which one you have done...

Since you are a nurse, I will put it to you in these terms: if your patient were showing symptoms that you thought strongly pointed to neuropathy, and you felt that for the patient's sake you needed to make her doctor aware of it, would you march right up to that doctor as soon as you see him show up at the hospital and say, 'I think Ms. So-and-so has some kind of neuropathy, and she might be hypothyroid'?

Of course not -- it's up to the doctors to diagnose. You would probably say something more like, 'This patient complains of burning and numbness in her right foot, and says she sometimes gets electrical sensations shooting up her leg. She reports that the Topamax she has been taking helps to relieve the burning. She says that she has had both thyroid and nerve conduction testing done in the past, but that was a few years ago...'

Well, that's what you need right now, an advocate. Do you have someone who might be both willing and able to fill that role -- your husband, perhaps? If not, you really have no choice but to act as your OWN advocate. Dress nicely, because it makes you 'look respectable' and gets people to take you seriously (I'm sure you would do that anyway.) Don't be afraid to use the fact that you are a nurse to your own advantage. Let the doctor see that you know what you're talking about and be sure you have the questions you want to ask him prepared and memorized ahead of time (or written down, but some doctors object to that so memorizing is better).

Don't just sit there, mute, and let the doctor do all the talking; it's your body, after all, and you certainly need to have some input into what is done (or NOT done) to it! I know that for some of us (myself included) it is much easier, and feels much more natural, to advocate for someone else than to advocate for ourselves, but it can be done, and it might very well make a difference in the treatment you get from this new podiatrist.

Sharon
:(PIPE)

Re: ATTN DOCTORS PF VS PN

Bev on 5/02/03 at 14:54 (117687)

Sharon,
Thankyou again, VERY good information. I always try to dress nicely, however when they make me put a 'cute' gown on , we all look the same anyway, haha. Not all doctors have you put gowns on , just some, though, just a joke :). My problem is that I am too quiet and shy and I do not stand up for myself, I have to be more assertive, I know ! I promise I will really try to do better this time, I will be assertive, I will be assertive, I will be assertive. There, that may help :D. Wish me luck. BYE. Have a great weekend. Bev

Re: ATTN DOCTORS PF VS PN

Ed Davis, DPM on 5/02/03 at 15:05 (117689)

Sharon:
Excellent points. The traditional role of doctors included patient advocacy. Managed care has changed that, to an extent. Many do not realize how that role has changed.

Irrespective of the above issue, patients always do better when they become active participants in the decision making process.
Ed

Re: LOL, Bev!

Sharon W on 5/02/03 at 16:22 (117695)

I DO wish you luck, Bev, LOTS of luck! %%- %%- %%- %%- %%-

Just practice saying ALL the things you need to tell this doctor about, and keep saying it over and over until you get to the point where you know all the symptoms you need to tell him about and all the questions you want to be sure to ask, SO well that you could remember them in your sleep! If you are confident that you won't forget anything, and you know exactly what you want to say to him, it's much less likely you'll be tongue-tied while you're at his office...

Sharon
%%-

Re: Dr. Ed - active participants

Sharon W on 5/02/03 at 16:55 (117697)

Dr. Ed,

I wish that ALL doctors had the same attitude you do toward patients who want to be active particpants in the decision making process. :)

Unfortunately, some doctors do make it very difficult, or even IMPOSSIBLE, for a patient to play an appropriate role in their own health care. :(

And of course, managed care or preferred provider health care systems often make it very difficult (and very expensive!) for patients to see the doctor(s) they would prefer. x-( But, what can we do??

Sharon

Re: Dr. Ed -- a couple more questions

Sharon W on 5/02/03 at 17:25 (117699)

Dr. Ed,

When you refer to the 'rarer entities' that compose the remaining 10%, are you referring primarily to the various genetic and/or auto-immune causes?

I've been studying those, too, and while the prognosis is typically quite discouraging, I was surprised to learn that in many cases there ARE treatments available that show encouraging results if treatment is begun EARLY in the course of the disease.

I was fascinated by your comment, 'NCV/EMG is not a good screening test because it has poor sensitivity. Its value is in helping to find the focus of pathology because while sensitivity is poor, selectivity is good.'

That being the case, WHY do so many doctors seem to RULE OUT the possibility of neuropathy when NCV/EMG testing have been done and the results were normal? Are they simply under the mistaken impression that normal nerve conduction test results mean no neuropathy could be present? That sounds like what happened in Bev's case, and I've come across that problem myself as well.

I am QUITE fascinated by the fact that the NCV done in my right foot 4 months before my TTS surgery showed only VERY SLIGHT slowing of the lateral plantar nerve, yet 11 months later, AFTER successful TTS surgery, when I was in SO MUCH LESS PAIN (!) than I had been during that first NCV, the repeat test showed mild nerve slowing of the posterior tibial nerve and several others, going up to the common peroneal? How could that be the case?? I find it so confusing... :-/

Sharon
.

Re: Dr. Ed -- a couple more questions

Ed Davis, DPM on 5/02/03 at 19:42 (117710)

Sharon:
You are correct about the 10%. When one gets past the major causes, the remaining causes range from the genetic causes, autoimmune and environmental causes to those cases of PN labelled as 'idiopathic.'

One issue with NCV is the degree of variability in results dpending on the skill of the testor. Did the same person perform both NCVs on you?

Keep in mind that if a test is not sensitive but is selective, that test is of limited value in ruling in a disease but has more value in ruling out a disease. In other words, a test with poor sensitivity is expected to miss a lot of individuals who have the disease or problem. If a problem is suspected than that same test, if positive tends to have great value in confirming the disease since it is selective.

If TTS is suspected a negative NCV would be of limited value in ruling out TTS since it will miss many with TTS. On the other hand, if the test is positive, then that individual has a very small chance of not having TTS.
Ed

Re: Dr. Ed - NCV

Sharon W on 5/02/03 at 19:53 (117714)

Dr. Ed,

The two NCV tests were done by two different testors and on two different machines. Is there THAT much variability, though??

Thanks for taking the time to answer my questions. I appreciate it.

Sharon
.

Re: research PN treatment

Dr. Z on 5/02/03 at 20:40 (117719)

To all posters what information have you found in your research that would help to treat and resolve pn conditions

Re: research PN treatment

Sharon W on 5/02/03 at 22:29 (117722)

Dr. Z,

This is a good one: look a bit further down on the page and you will find a chart listing all of the most relevant info on 8 different varieties of chronic immune demyelinating neuropathies, including what antibodies can be tested for, the associated levels of M-Protein, and what treatments may be used.

http://www.neuro.wustl.edu/neuromuscular/antibody/pnimdem.html#cidp

Sharon
.

Re: research PN treatment

Dr. Z on 5/03/03 at 06:04 (117723)

Boy is this comprehensive informatoin.

Re: research PN treatment

Sharon W on 5/03/03 at 06:47 (117725)

Here's something else that interested me, from the same site (although it doesn't mention treatments):

Syndromes with Neuropathy & Myopathy
Paraneoplastic (with weight loss > 15%)
Neuropathy: Distal; Sensory > Motor
Myopathy: Proximal with type II muscle fiber atrophy
Inclusion Body Myositis
Systemic disorders
Uremia
Acromegaly
Collagen vascular disorders
Sarcoid
HIV Infection
Myopathy: Inflammatory;
Several types of neuropathy
Hereditary
Debrancher deficiency
Congenital muscular dystrophy: Merosin deficiency
Marinesco-Sjögren
Mitochondrial: MNGIE Syndrome
Tyrosinemia
Drugs & Toxins
Amiodarone
Chloroquine
Chlorphenoxy
Clofibrate: Risk factor - renal failure
Colchicine: Risk factor - renal failure
Doxorubicin
Eosinophilia-myalgia syndrome
Ethanol: Risk factor - fasting
Hydroxychloroquine
Organophosphates
Perhexiline
Vincristine

Sharon
.

Re: research PN treatment

Sharon W on 5/03/03 at 06:49 (117726)

Sorry, it didn't paste too well, I should have added spaces to separate the categories. #-o

Sharon
.

Re: research PN treatment

Bev on 5/06/03 at 08:10 (117887)

Hi Sharon, That is quite a sight you found , a lot of good information. I sure do hope that you are able to find some help for your PN and find out the correct tests to receive the correct diagnosis and finally to receive the treatments needed to restore your health. It is pretty much up to the patient, as you are doing, to carry the burden of your care upon yourself, to do the constant research, live on the internet night and day until you find your answers and then go to the doctors and talk to them.
That is pretty much what the doctor I went to yesterday said. He checked out my footsees and said that I have PF and PN , small sensory PN, and recommends ESWT . After he told me his findings, I told him about mine (and what I found out on the internet) and he agreed with me. So now he needs to write his findings back to my workmans comp case worker first and then we go from there. Now he recommends the Dornier, what do you think? What is the best, the Big 'O' or the Dornier? He said that it is my choice as to where I choose to go and what kind I choose to have. He said the Dornier is the best because it can be followed with the ultrasound and the big 'O' can not, and the 'O' needs to go through the heel bone and can damage the bone and the dornier does not go through bone so it is safer, correct? How many treatments do you usually need with the big 'O' compared to the Dornier? Perhaps DOCTOR Z. will grab on to this and answer for us too. Thankyou for all of your help and all of your research you do in all of our behalf >:D<

Re: research PN treatment

Dr. Z on 5/06/03 at 17:43 (117943)

The machine to use is the Dornier. It beat the Ossatron in the One year follow up studies. Dornier invented ESWL.

Re: research PN treatment

Bev on 5/06/03 at 17:55 (117946)

Sounds good to me , thankyou for your opinion doctor :) Bev