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MAYBE HAVE AN ANSWER?

Posted by DENNIS on 6/30/01 at 14:57 (051948)

HELLO TO ALL, I HAVEN'T POSTED HERE FOR SOME TIME BUT VISIT THE SITE DAILY. I HAD TTS RELEASE FEB. 07, 2001 AND DID NOT GET ANY RELIEF FROM THE PAIN. ADDITIONALLY WAS DIAGNOSED WITH SPINAL STENOSIS SO HAD AN EPIDURAL SAME TIME AS THE TTS RELEASE AND THAT DIDN'T HELP. WENT FOR PT ON THE STENOSIS AND THAT DIDN'T HELP. NEUROSURGEON SAYS STENOSIS NOT SEVERE ENOUGH TO WARRANT SURGERY. ALSO HAVE NEUROPATHY AND A BLOOD TEST LAST MONDAY REVEALS HIGH BLOOD SUGAR SO HAVE TO HAVE A 3 HOUR GLUCOSE TOLERANCE TEST AS A FOLLOW UP. DR. I NOW SEE IS IN OMAHA, WAS SEEING ONES IN OUTER NEBRASKA AND WASN'T GETTING ANYWHERE. DR. THINKS THERE IS A RELATIONSHIP BETWEEN THE TTS, NEUROPATHY AND THE POSSIBLE DIABETES. HOPEFULLY I FINALLY HAVE AN ANSWER AS TO THE CAUSE AND THEN CAN ATTACK THE CAUSE AND NOT THE SYMPTOMS. IN WHAT I WOULD THINK IS UNRELATED, I AM SCHEDULED FOR TESTING THIS MONDAY TO SEE IF I HAVE COLON CANCER. I WOULD THINK THAT IT WOULD NOT BE RELATED TO THE TTS AND NEUROPATHY AS I CAN'T IMAGINE ANY NERVE CONNECTION BETWEEN MY 'POSTERIOR' AND MY FEET. COULD IT BE A POSSIBILITY? GOOD LUCK TO ALL OF YOU OUT THERE AND KEEP A POSITIVE OUTLOOK ON YOUR CONDITIONS.

Re: MAYBE HAVE AN ANSWER?

Lisa C on 6/30/01 at 23:25 (051960)

Hi Dennis,
My husband has neuropathy and diabetes. There is a web site http://www.neuropathy.org which you might want to look at. Its free to join even though they ask if you want to make a donation. I would also recommend the book 'Aching soles numb toes' author John? someone on the site will know. I read it to try and understand a bit about neuropathy. It has alot of info about drugs & herbal & other treatments available that your Dr. may not know about or suggest. Some off label uses of meds. I do know that if you have diabetes, getting your blood sugar stabilized and under control is THE most important thing you can do to help yourself re: neuropathy. As for colon cancer, I have a friend who is back to complete normal after colon cancer surgery & treatment several years ago. I'll put you in my prayers. You sound like you have a good positive attitude. So important and so hard sometimes. I am really curious as to how the TTS could be related to poss diabetes and neuropathy. Please let us know what your Dr. says.

Re: MAYBE HAVE AN ANSWER?

wendyn on 7/01/01 at 08:42 (051973)

Dennis - had they tested you for diabetes before your release? This really seems to happen way too often. I feel like a broken record asking new people here if they've been tested - but it's one of those things that absolutely should be checked prior to surgery.

Re: MAYBE HAVE AN ANSWER?

DENNIS on 7/01/01 at 10:46 (051981)

YES, I WAS CHECKED ABOUT 8 MONTHS PRIOR TO THE SURGERY. AT THAT TIME IT WAS JUST BARELY OVER 'THE TOP'. IT TESTED HIGHER LAST WEEK AFTER I FASTED FOR 16 HOURS. FRANKLY THE DR. THAT GOT THE INITIAL RESULT, THE ONE PRIOR TO THE RELEASE, JUST BLEW IT OFF. I HAD SOME OTHER EXPERIENCES WITH HIM AT THE SAME TIME THAT WERE NOT POSITIVE AND HAVE SINCE DROPPED HIM. I JUST STARTED WITH THIS DR. LAST WEEK AND HE IS SUCH A REFRESHING CHANGE FROM THE FIRST ONE.

Re: MAYBE HAVE AN ANSWER?

DENNIS on 7/16/01 at 18:01 (053398)

HAD SEVERAL POLYPS REMOVED AND THEY WERE BENIGN. DR. SAID YES THAT THERE COULD BE A CORRELATION BETWEEN COLON CANCER AND THE NEUROPATHY THAT I EXPERIENCE. 3 HOUR GLUCOSE TOLERANCE TEST WAS A FLOP AS MY VEIN COLLAPSED. WILL TRY AGAIN WEEK OF JULY 23. WENT TO DR. IN OMAHA TODAY. HE SAID HE SUSPECTS DIABETES INDUCED NEUROPATHY/TTS. SAYS CANNOT DO ANYTHING FOR THE CURRENT CONDITION, CAN ONLY TRY AND KEEP IT FROM GETTING WORSE. AM ON NEURONTIN, 300MG, 4 TIMES PER DAY. DR. WANTS ME TO GO TO 5 TIMES PER DAY FOR 4 DAYS AND IF THAT DOESN'T ALLEVIATE THE PAIN THEN GO TO 6 PER DAY. HAVE BEEN NOTICING MUSCLE CRAMPS IN THE FOOT RIGHT BY THE 3RD AND 4TH TOES AS WELL AS AT THE BASE OF THE CALF AND ON THE RIGHT AND LEFT SIDE OF THE CALF. DR. SAYS IS A SIDE EFFECT OF THE NEURONTIN. SAYS TO ALSO STOP THE NEURONTIN IF THE CRAMPS GET TOO BAD. MY TTS RELEASE ON THE RIGHT FOOT AS STATED ABOVE WAS UNSUCCESSFUL ON FEB. 07 OF THIS YEAR. ALSO HAVE SPINAL STENOSIS, NOT BAD ENOUGH TO OPERATE AT THIS POINT. HAVE A REAL STRONG URGE TO GO TO THE UNION PACIFIC RAILROAD TRACKS AND LAY WITH MY FEET OVER THE TRACKS AND AWAIT THE NEXT COAL TRAIN COMING THROUGH. I REALLY FEEL LIKE I WOULD JUST AS SOON GET RID OF MY FEET INSTEAD OF TRYING TO COPE WITH THEM. TAKING TRASH TO THE END OF THE DRIVEWAY IS A MAJOR UNDERTAKING. I JUST FEEL LIKE I NEED TO VENT MY FRUSTRATIONS OUT ON/WITH ALL OF YOU. I SINCERELY, FROM THE BOTTOM OF MY HEART, HOPE THAT ABSOLUTELY NONE OF YOU EXPERIENCE THIS MESS. GOOD LUCK TO YOU ALL.

Re: MAYBE HAVE AN ANSWER?

wendyn on 7/16/01 at 22:26 (053424)

Hi Dennis - I remember you were going in for testing....did they decide if it was cancerous or benign (I can't tell from your post).

I am sorry you are having such a rough time. Is the neurotonin helping at all? Do you have any good days?

Dennis I think I had given you the website for the neuropathy board - did you ever check it out? I really think you might get some very informed support there...please let me know what you thought.

Re: MAYBE HAVE AN ANSWER?

DENNIS on 7/17/01 at 14:48 (053507)

SORRY THAT MY POST WAS VAGUE. I HAD JUST RETURNED FROM THE DR. AND WAS VERY UPSET. THE POLYPS WERE BENIGN. I HAVE BEEN TAKING 300MG OF NEURONTIN 4 TIMES A DAY. DR. WANTS ME TO GO TO 5 TIMES A DAY FOR 4 DAYS AND IF IT DOESN'T HELP (4 A DAY IS NOT DOING ANYTHING), THEN GO TO 6 PER DAY. A SIDE EFFECT THAT I AM EXPERIENCING IS CRAMPING IN MY RIGHT FOOT BY THE TOES (RIGHT FOOT WAS THE ONE THAT I HAD THE TTS RELEASE ON AND THE ONE THAT NEUROLOGIST SAID WAS THE WORST OF THE TWO), ALSO ON LEFT AND RIGHT SIDE AS WELL AS BOTTOM MIDDLE OF MY RIGHT CALF, CRAMPING IN RIGHT ARM BETWEEN ELBOW AND WRIST. DR. SAID NEURONTIN IS/COULD BE DOING THAT. IT'S NOT TO THE POINT OF A CHARLEY HORSE WHERE IT FEELS LIKE A KNOT, BUT RATHER LIKE THE START OF ONE WHERE YOU HAVE TO QUICKLY FLEX THE MUSCLE(S) INVOLVED TO KEEP IT FROM KNOTTING. HE SAYS IF CRAMPING BECOMES A PROBLEM OR IF THE 6/DAY DOESN'T DO IT, THEN QUIT THE NEURONTIN. AS FOR GOOD DAYS, THE BEST ICAN GET IS A PAIN SIMILAR TO A TOOTHACHE. HAD ONE OF MY WORST DAYS EVER LAST THURSDAY, WHICH WAS A WEEK AFTER BEING AT 4/DAY ON NEURONTIN. TOOK TRASH TO END OF THE DRIVEWAY AND LITERALLY WANTED TO CRAWL BACK, BUT AM TOO PROUD AND/OR STUBBORN FOR THAT. GOT BACK INTO THE HOUSE AND 'LOST IT EMOTIONALLY'. DO NOT REMEMBER THE WEB SITE FOR NEUROPATHY. PLEASE LET ME KNOW THE WEB ADDRESS. DR. SAID HE CAN'T REVERSE THE DAMAGE ALREADY DONE. CAN ONLY HOPE THAT THE NEURONTIN WILL GIVE ME RELIEF. GO BACK FOR ANOTHER GLUCOSE TOLERANCE TEST NEXT WEEK. BLOOD SUGAR IS AT 125. NOT RADICALLY HIGH, BUT HIGHER THAN IT SHOULD BE. IF THE RESULTS ARE NOT GOOD, HE THEN WANTS ME TO FILL A PRESCRIPTION THAT HE GAVE ME (AS A JUST IN CASE I NEED IT IF THE RESULTS ARE BAD). THE SCRIP IS FOR A PRODUCT CALLED WELCOL AND IT SAYS '6TABS/D' WHICH IASSUME IS 6 TABS PER DAY. HE SAYS IT COSTS AROUND $130 FOR A MONTH'S SUPPLY. THE NEURONTIN IS AROUND $85 OR $90 FOR 120 TABS, WHICH IS LESS THAN A MONTHS SUPPLY AT EITHER 5 OR 6 PER DAY. HAVE PRESCRIPTION INSURANCE SO EACH ONE WOULD COST $30 EACH. ANYWAY, HE SAYS THE WELCOL WOULD KEEP THE SUGAR CONDITION FROM GETTING WORSE, BUT LIKE I SAID EARLIER, IT WOULDN'T UNDO THE DAMAGE ALREADY DONE. I HAVE A LIMP CONSTANTLY AND AM UNABLE TO SIT WITHOUT FEET TURNING BLUE AFTER ABOUT 10 MINUTES AND THEN THEY TURN PASTY WHITE AND GET COLD WHEN I ELEVATE THEM. DR SAYS IS FROM VEINS, NOT ARTERIES, SO CAN'T DO AN ANGIOPLASTY TO CORRECT THE CONDITION. SAYS THERE IS SOME KIND OF A FLAPPER IN THE VEINS THAT IS NOT WORKING FOR ME. SORRY TO BORE YOU BUT THIS BOARD SEEMS LIKE THE ONLY PLACE I CAN VENT MY FRUSTRATIONS AND THE ONLY PLACE WHERE I CAN FIND PEOPLE THAT CAN RELATE TO WHAT IS GOING ON.

Re: MAYBE HAVE AN ANSWER?

wendyn on 7/17/01 at 22:00 (053545)

Dennis - I think it's http://www.neuropathy.org - you have to register the first time. They do solicit for donations (Scott sells things here - they are a non profit organization) but you're under no obligation. They mailed me a very detailed booklet on neuropathy - and I received 1 mail out soliciting funds. No phone calls at all so far and I registered over a year ago.

Not that you're not ALWAYS welcome here....but I'm thinking that you may find many more people with very similar problems to you.

They seem to know a lot about neurotonin and all those drugs, many of them are diabetic. I think that the BB set up is much better here, but I still think you might find an additional support group there that could make a huge difference for you.

Please let me know if you get there and what you think....take care.

Re: MAYBE HAVE AN ANSWER?

Lisa C on 7/21/01 at 02:40 (053891)

Dennis, I have been hoping that you would post re: your tests. Thats great news that your polyps were benign! I am sorry to hear that you will have to repeat the glucose test. That means that you have to fast again huh? I am supposed to go get a cholestral test and I have to fast for 12 to 16 hours prior. I am so terrible, every night I plan to do it the next day and then I have that cup of coffee each morning and say tomorrow. Did you try ther neuropathy site? If neurontin is not right for you there are so many alternatives. Just keep trying. Neurontin is one of the newer drugs for neuropathy but just like with PF what works for one person will not work for another. Have your doctor try different drugs and combinations of drugs. Still the most important keep your blood sugar under control. I am glad that you posted. Where do you live? Here in California there are neuropathy trials. You get all your drugs, treatments, doctor care free. It is for drugs that are not yet approved. I am hoping that you find some relief somewhere. Let us know how that glucose test turns out. The people at heelspurs really care!!!

Re: MAYBE HAVE AN ANSWER?

DENNIS on 7/23/01 at 16:52 (054050)

HAVE YET TO GO IN FOR THE GLUCOSE TOLERANCE TEST. MY SON AND HIS FAMILY WERE HERE ALL LAST WEEK. I LIVE IN NEBRASKA. MEDICAL 'FINESSE' IS HARD TO COME BY IN MY NECK OF THE WOODS. FASTING IS NOT A PROBLEM AS ONLY EAT 1 MEAL A DAY, IN THE EVENING, SO AN A.M. TEST IS A PIECE OF CAKE FOR ME. PROBLEM IS WITH THE VEINS. THEY CAN'T FIND THEM IN THE ARMS, HAVE TO USE THE BACK OF THE HAND AND IT DOESN'T HOLD UP TO THE MULTIPLE PUNCTURES. I TRIED THE NEUROPATHY SITE AND IT DIDN'T SEEM TO BE VERY HELPFUL. AM TAKING 300MG OF NEURONTIN 6 TIMES PER DAY AND IT DOESN'T HELP. STILL PLSN MY DAY AROUND THE PAIN IN MY FEET. AM THINKING THAT MAYBE A SECOND TTS RELEASE MAY HELP. LAST ONE (ONLY ONE) WAS ON FEB. 07. HAVE TTS IN BOTH FEET, RIGHT WORSE THAN LEFT. DID THE RIGHT ONE FIRST. AM RUNNING OUT OF OPTIONS. PAIN IS AN ISSUE, DAY AND NIGHT. HOPE TO DO THE GLUCOSE TOLERANCE TEST LATE THIS WEEK OR EARLY NEXT. WAS NOT ABLE TO GET INTO A DOC EXCEPT EVERY 3-4 MONTHS FOR THE LONGEST TIME. NOW HAVE BEEN TO ONE OR HOSPITAL EVERY WEEK FOR THE LAST 6 WEEKS, SO AM KIND OF READY FOR A BREAK FROM THEM FOR A WEEK, SO MAY WAIT TIL NEXT WEEK. THANK YOU FOR YOUR CONCERNS. PLEASE KEEP IN TOUCH.

Re: MAYBE HAVE AN ANSWER?

Lisa C. on 7/24/01 at 23:23 (054192)

Hi Dennis,
If you are diabetic having just on meal each night is not good for you. You would be better off with several small meals a day to keep your blood sugar levels steady. I am hoping that *Brian* will respond to your post re: the pain you are suffering. Neuropathy can be tough (putting it lightly huh?) but I am like to think that at least some of that pain can be reduced. It sure seems like in the year 2001 we shouldn't have to be miserable with pain. I just thought that the neuro site might give you some ideas of treatments to ask your Doctor for. I know this (heelspurs) site helped me ask for things that otherwise I never would have been offered. (iontopherisis & cort w/ultrasound...) I have narrow deep veins. I donate blood regularly and I have learned that NOT getting the numbing shot is better. It makes the veins harder to get to for some reason. I know that sometimes a cream (emla ?) is applied before an IV, this has the same undesirable effect. I have no idea if this applies to you. I just want you to know that I am thinking about you and hoping for good things for you. I hope you enjoyed having your family visit you. Its nice they came to you!

Re: MAYBE HAVE AN ANSWER?

wendyn on 7/25/01 at 08:18 (054251)

I have to second Lisa's advice - despite the fact that this isn't a forum for diets....having one meal a day really isn't good for anyone - especially diabetics.

Re: MAYBE HAVE AN ANSWER?

DENNIS on 7/25/01 at 16:10 (054285)

HAVE BEEN THINKING ABOUT THINGS LATELY. DOCTORS ARE FOCUSING ON NEUROPATHY. HAD TO DO SOME YARD WORK YESTERDAY AND THE PAIN WHERE THE TARSAL TUNNEL IS WAS VERY, VERY BAD ON BOTH FEET. I REALLY AM BEGINNING TO WONDER IF MAYBE THE REASON THE DOCS ARE CONCENTRATING ON THE NEUROPATHY ISSUE IS BECAUSE THAT'S WHAT THEY'RE THE MOST FAMILIAR WITH. PERHAPS THE IGNORANCE OF THE TTS ISSUE BY MY 'LOCAL' MEDICAL COMMUNITY IS HINDERING THE RESULTS (ACTUALLY THE LACK THERE OF) OF MY PROGRESSION. DOES ANYONE HAVE KNOWLEDGE OF A DR. WITH EXPERTISE/EXPERIENCE RELATING TO TTS IN NEBRASKA OR A SURROUNDING STATE? I LIVE IN THE CENTRAL PART OF THE STATE SO DENVER IS ABOUT 9 HOURS OR SO AWAY AND I WOULD GUESS THAT KANSAS CITY WOULD BE ABOUT THE SAME. DES MOINES AREA WOULD BE ABOUT 6 HOURS OR SO AWAY. I KNOW THAT THE TRAVELLING WOULD BE VERY DIFFICULT AS I CAN'T STAND TO SIT FOR MORE THAN 20 TO 30 MINUTES WITHOUT THE PAIN GETTING VERY BAD. PLEASE ADVISE OF ANY MEDICAL CONTACTS IN MY IMMEDIATE AREA. YELLOW PAGES ARE FRUITLESS. THANK YOU.

Re: MAYBE HAVE AN ANSWER?

wendyn on 7/25/01 at 23:38 (054322)

Dennis - I am confused.

TTS IS neuropathy.

Neuropathy IS TTS.

Neuropathy is a problem with your nerves - regardless of cause.

I am not sure what you mean when you say your doctors are focusing on the neuropathy but not the TTS - they should be the same thing. Please explain....

Re: MAYBE HAVE AN ANSWER?

DENNIS on 7/27/01 at 13:22 (054520)

ALL I HEAR FROM THE DR.S IS NEUROPATHY AND NOT TTS. ALSO ON AN EARLIER POST HERE, EVEN YOU SUGGESTED THAT I FOCUS ON THE NEUROPATHY WEB SITE WHICH ALSO LED ME TO BELIEVE THAT IT WAS AN ISSUE SEPERATE FROM TTS. THIS IS THE FIRST THAT I'VE BEEN TOLD THAT NEUROPATHY IS SYNONYMOUS WITH TTS, OR AT LEAST THE CAUSE/RESULT THEREOF. ISN'T IT A PITY WHEN YOU LEARN MORE FROM A WEBSITE THAN FROM THE DOCTORS?

Re: MAYBE HAVE AN ANSWER?

Lisa C on 7/28/01 at 04:08 (054616)

I hope a doctor will respond, but perhaps tts is neuropathy of a specific nerve. My husband has neuropathy (burning, tingling, shocking, stabbing pain of the entire soles of his feet) but he does not have tts as far as I know.

Re: MAYBE HAVE AN ANSWER?

Dr. Zuckerman on 7/28/01 at 09:12 (054622)

Sometimes the EMG testing won't confirm TTS due to the early progression of the TTS. You can also have pf with the same feeling that your husband is experiencing. . Would need to have additional clinical examination information to help you out with this one. What tests what type of examination was done.

Re: MAYBE HAVE AN ANSWER?

Lisa C on 6/30/01 at 23:25 (051960)

Hi Dennis,
My husband has neuropathy and diabetes. There is a web site http://www.neuropathy.org which you might want to look at. Its free to join even though they ask if you want to make a donation. I would also recommend the book 'Aching soles numb toes' author John? someone on the site will know. I read it to try and understand a bit about neuropathy. It has alot of info about drugs & herbal & other treatments available that your Dr. may not know about or suggest. Some off label uses of meds. I do know that if you have diabetes, getting your blood sugar stabilized and under control is THE most important thing you can do to help yourself re: neuropathy. As for colon cancer, I have a friend who is back to complete normal after colon cancer surgery & treatment several years ago. I'll put you in my prayers. You sound like you have a good positive attitude. So important and so hard sometimes. I am really curious as to how the TTS could be related to poss diabetes and neuropathy. Please let us know what your Dr. says.

Re: MAYBE HAVE AN ANSWER?

wendyn on 7/01/01 at 08:42 (051973)

Dennis - had they tested you for diabetes before your release? This really seems to happen way too often. I feel like a broken record asking new people here if they've been tested - but it's one of those things that absolutely should be checked prior to surgery.

Re: MAYBE HAVE AN ANSWER?

DENNIS on 7/01/01 at 10:46 (051981)

YES, I WAS CHECKED ABOUT 8 MONTHS PRIOR TO THE SURGERY. AT THAT TIME IT WAS JUST BARELY OVER 'THE TOP'. IT TESTED HIGHER LAST WEEK AFTER I FASTED FOR 16 HOURS. FRANKLY THE DR. THAT GOT THE INITIAL RESULT, THE ONE PRIOR TO THE RELEASE, JUST BLEW IT OFF. I HAD SOME OTHER EXPERIENCES WITH HIM AT THE SAME TIME THAT WERE NOT POSITIVE AND HAVE SINCE DROPPED HIM. I JUST STARTED WITH THIS DR. LAST WEEK AND HE IS SUCH A REFRESHING CHANGE FROM THE FIRST ONE.

Re: MAYBE HAVE AN ANSWER?

DENNIS on 7/16/01 at 18:01 (053398)

HAD SEVERAL POLYPS REMOVED AND THEY WERE BENIGN. DR. SAID YES THAT THERE COULD BE A CORRELATION BETWEEN COLON CANCER AND THE NEUROPATHY THAT I EXPERIENCE. 3 HOUR GLUCOSE TOLERANCE TEST WAS A FLOP AS MY VEIN COLLAPSED. WILL TRY AGAIN WEEK OF JULY 23. WENT TO DR. IN OMAHA TODAY. HE SAID HE SUSPECTS DIABETES INDUCED NEUROPATHY/TTS. SAYS CANNOT DO ANYTHING FOR THE CURRENT CONDITION, CAN ONLY TRY AND KEEP IT FROM GETTING WORSE. AM ON NEURONTIN, 300MG, 4 TIMES PER DAY. DR. WANTS ME TO GO TO 5 TIMES PER DAY FOR 4 DAYS AND IF THAT DOESN'T ALLEVIATE THE PAIN THEN GO TO 6 PER DAY. HAVE BEEN NOTICING MUSCLE CRAMPS IN THE FOOT RIGHT BY THE 3RD AND 4TH TOES AS WELL AS AT THE BASE OF THE CALF AND ON THE RIGHT AND LEFT SIDE OF THE CALF. DR. SAYS IS A SIDE EFFECT OF THE NEURONTIN. SAYS TO ALSO STOP THE NEURONTIN IF THE CRAMPS GET TOO BAD. MY TTS RELEASE ON THE RIGHT FOOT AS STATED ABOVE WAS UNSUCCESSFUL ON FEB. 07 OF THIS YEAR. ALSO HAVE SPINAL STENOSIS, NOT BAD ENOUGH TO OPERATE AT THIS POINT. HAVE A REAL STRONG URGE TO GO TO THE UNION PACIFIC RAILROAD TRACKS AND LAY WITH MY FEET OVER THE TRACKS AND AWAIT THE NEXT COAL TRAIN COMING THROUGH. I REALLY FEEL LIKE I WOULD JUST AS SOON GET RID OF MY FEET INSTEAD OF TRYING TO COPE WITH THEM. TAKING TRASH TO THE END OF THE DRIVEWAY IS A MAJOR UNDERTAKING. I JUST FEEL LIKE I NEED TO VENT MY FRUSTRATIONS OUT ON/WITH ALL OF YOU. I SINCERELY, FROM THE BOTTOM OF MY HEART, HOPE THAT ABSOLUTELY NONE OF YOU EXPERIENCE THIS MESS. GOOD LUCK TO YOU ALL.

Re: MAYBE HAVE AN ANSWER?

wendyn on 7/16/01 at 22:26 (053424)

Hi Dennis - I remember you were going in for testing....did they decide if it was cancerous or benign (I can't tell from your post).

I am sorry you are having such a rough time. Is the neurotonin helping at all? Do you have any good days?

Dennis I think I had given you the website for the neuropathy board - did you ever check it out? I really think you might get some very informed support there...please let me know what you thought.

Re: MAYBE HAVE AN ANSWER?

DENNIS on 7/17/01 at 14:48 (053507)

SORRY THAT MY POST WAS VAGUE. I HAD JUST RETURNED FROM THE DR. AND WAS VERY UPSET. THE POLYPS WERE BENIGN. I HAVE BEEN TAKING 300MG OF NEURONTIN 4 TIMES A DAY. DR. WANTS ME TO GO TO 5 TIMES A DAY FOR 4 DAYS AND IF IT DOESN'T HELP (4 A DAY IS NOT DOING ANYTHING), THEN GO TO 6 PER DAY. A SIDE EFFECT THAT I AM EXPERIENCING IS CRAMPING IN MY RIGHT FOOT BY THE TOES (RIGHT FOOT WAS THE ONE THAT I HAD THE TTS RELEASE ON AND THE ONE THAT NEUROLOGIST SAID WAS THE WORST OF THE TWO), ALSO ON LEFT AND RIGHT SIDE AS WELL AS BOTTOM MIDDLE OF MY RIGHT CALF, CRAMPING IN RIGHT ARM BETWEEN ELBOW AND WRIST. DR. SAID NEURONTIN IS/COULD BE DOING THAT. IT'S NOT TO THE POINT OF A CHARLEY HORSE WHERE IT FEELS LIKE A KNOT, BUT RATHER LIKE THE START OF ONE WHERE YOU HAVE TO QUICKLY FLEX THE MUSCLE(S) INVOLVED TO KEEP IT FROM KNOTTING. HE SAYS IF CRAMPING BECOMES A PROBLEM OR IF THE 6/DAY DOESN'T DO IT, THEN QUIT THE NEURONTIN. AS FOR GOOD DAYS, THE BEST ICAN GET IS A PAIN SIMILAR TO A TOOTHACHE. HAD ONE OF MY WORST DAYS EVER LAST THURSDAY, WHICH WAS A WEEK AFTER BEING AT 4/DAY ON NEURONTIN. TOOK TRASH TO END OF THE DRIVEWAY AND LITERALLY WANTED TO CRAWL BACK, BUT AM TOO PROUD AND/OR STUBBORN FOR THAT. GOT BACK INTO THE HOUSE AND 'LOST IT EMOTIONALLY'. DO NOT REMEMBER THE WEB SITE FOR NEUROPATHY. PLEASE LET ME KNOW THE WEB ADDRESS. DR. SAID HE CAN'T REVERSE THE DAMAGE ALREADY DONE. CAN ONLY HOPE THAT THE NEURONTIN WILL GIVE ME RELIEF. GO BACK FOR ANOTHER GLUCOSE TOLERANCE TEST NEXT WEEK. BLOOD SUGAR IS AT 125. NOT RADICALLY HIGH, BUT HIGHER THAN IT SHOULD BE. IF THE RESULTS ARE NOT GOOD, HE THEN WANTS ME TO FILL A PRESCRIPTION THAT HE GAVE ME (AS A JUST IN CASE I NEED IT IF THE RESULTS ARE BAD). THE SCRIP IS FOR A PRODUCT CALLED WELCOL AND IT SAYS '6TABS/D' WHICH IASSUME IS 6 TABS PER DAY. HE SAYS IT COSTS AROUND $130 FOR A MONTH'S SUPPLY. THE NEURONTIN IS AROUND $85 OR $90 FOR 120 TABS, WHICH IS LESS THAN A MONTHS SUPPLY AT EITHER 5 OR 6 PER DAY. HAVE PRESCRIPTION INSURANCE SO EACH ONE WOULD COST $30 EACH. ANYWAY, HE SAYS THE WELCOL WOULD KEEP THE SUGAR CONDITION FROM GETTING WORSE, BUT LIKE I SAID EARLIER, IT WOULDN'T UNDO THE DAMAGE ALREADY DONE. I HAVE A LIMP CONSTANTLY AND AM UNABLE TO SIT WITHOUT FEET TURNING BLUE AFTER ABOUT 10 MINUTES AND THEN THEY TURN PASTY WHITE AND GET COLD WHEN I ELEVATE THEM. DR SAYS IS FROM VEINS, NOT ARTERIES, SO CAN'T DO AN ANGIOPLASTY TO CORRECT THE CONDITION. SAYS THERE IS SOME KIND OF A FLAPPER IN THE VEINS THAT IS NOT WORKING FOR ME. SORRY TO BORE YOU BUT THIS BOARD SEEMS LIKE THE ONLY PLACE I CAN VENT MY FRUSTRATIONS AND THE ONLY PLACE WHERE I CAN FIND PEOPLE THAT CAN RELATE TO WHAT IS GOING ON.

Re: MAYBE HAVE AN ANSWER?

wendyn on 7/17/01 at 22:00 (053545)

Dennis - I think it's http://www.neuropathy.org - you have to register the first time. They do solicit for donations (Scott sells things here - they are a non profit organization) but you're under no obligation. They mailed me a very detailed booklet on neuropathy - and I received 1 mail out soliciting funds. No phone calls at all so far and I registered over a year ago.

Not that you're not ALWAYS welcome here....but I'm thinking that you may find many more people with very similar problems to you.

They seem to know a lot about neurotonin and all those drugs, many of them are diabetic. I think that the BB set up is much better here, but I still think you might find an additional support group there that could make a huge difference for you.

Please let me know if you get there and what you think....take care.

Re: MAYBE HAVE AN ANSWER?

Lisa C on 7/21/01 at 02:40 (053891)

Dennis, I have been hoping that you would post re: your tests. Thats great news that your polyps were benign! I am sorry to hear that you will have to repeat the glucose test. That means that you have to fast again huh? I am supposed to go get a cholestral test and I have to fast for 12 to 16 hours prior. I am so terrible, every night I plan to do it the next day and then I have that cup of coffee each morning and say tomorrow. Did you try ther neuropathy site? If neurontin is not right for you there are so many alternatives. Just keep trying. Neurontin is one of the newer drugs for neuropathy but just like with PF what works for one person will not work for another. Have your doctor try different drugs and combinations of drugs. Still the most important keep your blood sugar under control. I am glad that you posted. Where do you live? Here in California there are neuropathy trials. You get all your drugs, treatments, doctor care free. It is for drugs that are not yet approved. I am hoping that you find some relief somewhere. Let us know how that glucose test turns out. The people at heelspurs really care!!!

Re: MAYBE HAVE AN ANSWER?

DENNIS on 7/23/01 at 16:52 (054050)

HAVE YET TO GO IN FOR THE GLUCOSE TOLERANCE TEST. MY SON AND HIS FAMILY WERE HERE ALL LAST WEEK. I LIVE IN NEBRASKA. MEDICAL 'FINESSE' IS HARD TO COME BY IN MY NECK OF THE WOODS. FASTING IS NOT A PROBLEM AS ONLY EAT 1 MEAL A DAY, IN THE EVENING, SO AN A.M. TEST IS A PIECE OF CAKE FOR ME. PROBLEM IS WITH THE VEINS. THEY CAN'T FIND THEM IN THE ARMS, HAVE TO USE THE BACK OF THE HAND AND IT DOESN'T HOLD UP TO THE MULTIPLE PUNCTURES. I TRIED THE NEUROPATHY SITE AND IT DIDN'T SEEM TO BE VERY HELPFUL. AM TAKING 300MG OF NEURONTIN 6 TIMES PER DAY AND IT DOESN'T HELP. STILL PLSN MY DAY AROUND THE PAIN IN MY FEET. AM THINKING THAT MAYBE A SECOND TTS RELEASE MAY HELP. LAST ONE (ONLY ONE) WAS ON FEB. 07. HAVE TTS IN BOTH FEET, RIGHT WORSE THAN LEFT. DID THE RIGHT ONE FIRST. AM RUNNING OUT OF OPTIONS. PAIN IS AN ISSUE, DAY AND NIGHT. HOPE TO DO THE GLUCOSE TOLERANCE TEST LATE THIS WEEK OR EARLY NEXT. WAS NOT ABLE TO GET INTO A DOC EXCEPT EVERY 3-4 MONTHS FOR THE LONGEST TIME. NOW HAVE BEEN TO ONE OR HOSPITAL EVERY WEEK FOR THE LAST 6 WEEKS, SO AM KIND OF READY FOR A BREAK FROM THEM FOR A WEEK, SO MAY WAIT TIL NEXT WEEK. THANK YOU FOR YOUR CONCERNS. PLEASE KEEP IN TOUCH.

Re: MAYBE HAVE AN ANSWER?

Lisa C. on 7/24/01 at 23:23 (054192)

Hi Dennis,
If you are diabetic having just on meal each night is not good for you. You would be better off with several small meals a day to keep your blood sugar levels steady. I am hoping that *Brian* will respond to your post re: the pain you are suffering. Neuropathy can be tough (putting it lightly huh?) but I am like to think that at least some of that pain can be reduced. It sure seems like in the year 2001 we shouldn't have to be miserable with pain. I just thought that the neuro site might give you some ideas of treatments to ask your Doctor for. I know this (heelspurs) site helped me ask for things that otherwise I never would have been offered. (iontopherisis & cort w/ultrasound...) I have narrow deep veins. I donate blood regularly and I have learned that NOT getting the numbing shot is better. It makes the veins harder to get to for some reason. I know that sometimes a cream (emla ?) is applied before an IV, this has the same undesirable effect. I have no idea if this applies to you. I just want you to know that I am thinking about you and hoping for good things for you. I hope you enjoyed having your family visit you. Its nice they came to you!

Re: MAYBE HAVE AN ANSWER?

wendyn on 7/25/01 at 08:18 (054251)

I have to second Lisa's advice - despite the fact that this isn't a forum for diets....having one meal a day really isn't good for anyone - especially diabetics.

Re: MAYBE HAVE AN ANSWER?

DENNIS on 7/25/01 at 16:10 (054285)

HAVE BEEN THINKING ABOUT THINGS LATELY. DOCTORS ARE FOCUSING ON NEUROPATHY. HAD TO DO SOME YARD WORK YESTERDAY AND THE PAIN WHERE THE TARSAL TUNNEL IS WAS VERY, VERY BAD ON BOTH FEET. I REALLY AM BEGINNING TO WONDER IF MAYBE THE REASON THE DOCS ARE CONCENTRATING ON THE NEUROPATHY ISSUE IS BECAUSE THAT'S WHAT THEY'RE THE MOST FAMILIAR WITH. PERHAPS THE IGNORANCE OF THE TTS ISSUE BY MY 'LOCAL' MEDICAL COMMUNITY IS HINDERING THE RESULTS (ACTUALLY THE LACK THERE OF) OF MY PROGRESSION. DOES ANYONE HAVE KNOWLEDGE OF A DR. WITH EXPERTISE/EXPERIENCE RELATING TO TTS IN NEBRASKA OR A SURROUNDING STATE? I LIVE IN THE CENTRAL PART OF THE STATE SO DENVER IS ABOUT 9 HOURS OR SO AWAY AND I WOULD GUESS THAT KANSAS CITY WOULD BE ABOUT THE SAME. DES MOINES AREA WOULD BE ABOUT 6 HOURS OR SO AWAY. I KNOW THAT THE TRAVELLING WOULD BE VERY DIFFICULT AS I CAN'T STAND TO SIT FOR MORE THAN 20 TO 30 MINUTES WITHOUT THE PAIN GETTING VERY BAD. PLEASE ADVISE OF ANY MEDICAL CONTACTS IN MY IMMEDIATE AREA. YELLOW PAGES ARE FRUITLESS. THANK YOU.

Re: MAYBE HAVE AN ANSWER?

wendyn on 7/25/01 at 23:38 (054322)

Dennis - I am confused.

TTS IS neuropathy.

Neuropathy IS TTS.

Neuropathy is a problem with your nerves - regardless of cause.

I am not sure what you mean when you say your doctors are focusing on the neuropathy but not the TTS - they should be the same thing. Please explain....

Re: MAYBE HAVE AN ANSWER?

DENNIS on 7/27/01 at 13:22 (054520)

ALL I HEAR FROM THE DR.S IS NEUROPATHY AND NOT TTS. ALSO ON AN EARLIER POST HERE, EVEN YOU SUGGESTED THAT I FOCUS ON THE NEUROPATHY WEB SITE WHICH ALSO LED ME TO BELIEVE THAT IT WAS AN ISSUE SEPERATE FROM TTS. THIS IS THE FIRST THAT I'VE BEEN TOLD THAT NEUROPATHY IS SYNONYMOUS WITH TTS, OR AT LEAST THE CAUSE/RESULT THEREOF. ISN'T IT A PITY WHEN YOU LEARN MORE FROM A WEBSITE THAN FROM THE DOCTORS?

Re: MAYBE HAVE AN ANSWER?

Lisa C on 7/28/01 at 04:08 (054616)

I hope a doctor will respond, but perhaps tts is neuropathy of a specific nerve. My husband has neuropathy (burning, tingling, shocking, stabbing pain of the entire soles of his feet) but he does not have tts as far as I know.

Re: MAYBE HAVE AN ANSWER?

Dr. Zuckerman on 7/28/01 at 09:12 (054622)

Sometimes the EMG testing won't confirm TTS due to the early progression of the TTS. You can also have pf with the same feeling that your husband is experiencing. . Would need to have additional clinical examination information to help you out with this one. What tests what type of examination was done.