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Update

Posted by Dennis B. on 3/09/02 at 16:39 (076062)

I've posted on here several times and the last time Wendyn made an interesting comment about how my diagnosis of TTS turned into something else. Originally was told TTS in both feet, release performed on 1 of them Feb. 07 of last year. Was also told of spinal stenosis but found out it was mild and not a probale cause. Additionally was told of Peripheral Neuropathy. Many months and doctor visits later, had a sural nerve biopsy performed on Feb.18th of this year. Results in this week, is vasculitis, specifically vasculitic neuropathy. Damage ireeversible. To impede further damage have a choice between 2 drugs which may cause damage to organs. Dr. said I can't name an organ that wouldn't be a candidate for a side effect. Just to let you all and specifically Wendyn know what has happened. Will still be around in the background of this board daily so as to see if anyone may have similar symptoms to mine and alert them accordingly so that they can mention it to their Dr. Thank you all for everything that you have done to me in the past and with that, I will 'ride off into the sunset' and hope that I don't have to alert anyone to a similar condition.

Re: Update

Dennis B. on 3/09/02 at 16:42 (076063)

OOPS. Meant what you have done FOR me, not to me. Sorry about that.

Re: Update

wendyn on 3/09/02 at 19:26 (076074)

Dennis - that's awful, but please don't feel as though you have to disappear!! If you get anything out of the board, support - the odd bit of humor or suggestion on pain relief...it really doesn't matter what your diagnosis turns out to be.

What causes vasculitic neuropathy? I have never heard of it. What drugs do they want to put you on? Are you coping okay?

Re: Update

Dennis B. on 3/10/02 at 14:24 (076120)

thank you for your kind words. I haven't done a lot of research yet, but basically my auto-immune system is wacky. The cells in the blood stream, leuko(something), T cells and so forth are attacking good things, thinking that they are bad things, basically 'self-destructing' would be an exagerated, I hope, description. In my case, thus far only the nerves are involved, they are being destroyed. It is possible that this condition could deteriorate whereas the organs could also be attacked. The dr. indicated that I am very far along and he feels the damage is not reversible. He indicated that the drugs would AT BEST be a 50% chance of halting it's progress. The specific drugs are Prednisone and Cyclophosphamide. The latter of the two is normally used to treat cancer patients whereas the first one is an oral cortisone. The cyclophosphamide has a possibility of worse side effects than the Prednisone. The dr. told me that I could not name an organ in my body that would not be subject to side effect. The side effects that I can remember him naming off, and there were more, are: cataracts, weight gain, moon or pie face, osteoporosis(sp?), organ damage, diabetes, high blood pressure, stroke, hodgkins disease,etc. Basically they would break down my immune system which obviously means infections, colds, flus, and he mentioned something about the skin thinning or turning color. As to coping, it's a bit early on and the shock still needs to wear off. I now have a handicapped parking permit and the dr. has urged me to apply for social security disability. So, the best I can hope for is to stay 'as is'.

Re: Update

Donna SL on 3/10/02 at 17:00 (076124)

Dennis,

I am very sorry to hear about your diagnosis.

Do you have a copy of your original ncv test that was done prior to your surgery? I'm just curious if the sural nerve was tested at the time, along with the other nerves in the the foot, and ankle, and if any abnormalities showed up on that nerve too?

I agree with Wendy, please keep coming to the board for support, etc.

Donna

Re: Update

Julie on 3/10/02 at 17:27 (076126)

I agree too, Dennis. What you're up against really does sound awful, and you'll get friendship and support here, so do please keep coming. I also suggest you read the message John H has just posted on the Treatments board, an extract from a book telling how meditation helped a man to deal with extreme foot pain. I know your situation is different, but I've taught yoga, meditation, breathing exercises and relaxation for many years and I know they are helpful in coping with an apparently disastrous situation. I have a feeling you would get something you need now from them. Perhaps when the shock has worn off you can look into them. Please let me know if I can help.

Re: Keep in the fight,Dennis

Tammie on 3/10/02 at 19:18 (076142)

Dennis , first let me tell you how sorry I am to hear of your troubles. But my friend you stumbled into the best place in the net for support and help. I really mean it the people here are simply excuse me if i use my kids words but awesome! The best of the best.

I was reading what you have wrote and interested as some of what you say sounds like what my hubby has been told. Only he has been dx with Rum. Arthritis. Some of what he has been thru I see in what you post the attacking of the immune system and the side effects from meds that can destroy liver and other organs. The knowing that there can not be a what one would say :cure' But he can go in remission types. They have put him on some very strong immune system inhibitor. Also he takes a medicine that is used to treat cancer.They put both of thease together and have added a few things with it. He is signed up to recieve newer treatments but there is a waiting list. I only mention this as some of what you have wrote sounds familiar to what happened to him four yrs ago when he was first dx tho his does not affect nerves as of yet, more the cartlige and joints , and creates many other problems. He is now waiting for a mri report to see if he needs a new knee as it is bone on bone, this is his good knee. I know this is not exactly what you might have but it seems like how he started out.It was a whim that they did a blood test for the R Arthritis .

He was terrified and so was I as he was only 39 and had his whole life in front of him. This put him down alot like you sound about now. But the good news is this, He is a fighter, he has accepted what he cannot change and he of course has his down days and weeks and months but he has learned to keep going and to do what he can and enjoy it when he is capable. I can tell you this it is a long rocky road and there are times he quits fighting and the light burns dim, but something or someone helps him back up and back into life. I just want to tell you please dont lose hope yes you are scared and angry and feeling a million different emotions at this time, but I do hope that you have a loving family and some support as this is what will keep you on the right side of the road.

I do hope that you stay positive and eager to fight this as life tho may be changed somewhat, you can take and make things better for yourself.Positive thinking and lots of support! Please take a deep breathe and maybe take Julie up on her wonderful offer! And take a little step at a time, till you feel stronger. We are here for any support that we can give! Hugs to you and will keep you in my prayers!

Re: Update

Dennis B. on 3/11/02 at 14:05 (076180)

I have no copy of the ncv tests. the sural nerve biopsy was sort of a last resort as the neurologist was unable to diagnose the underlying cause. Most people that have had the nerve biopsy have not gotten results that indicate the cause, this time I was one of the lucky ones. Side effect of the biopsy is numbness, that I am told probably will not go away. It starts from the middle of the heel and goes around the outside of the foot to and including the small toe,in my case only the lower 1/2 of the toe. Thought it would help since I wouldn't feel pain in that area, but not true. Pain is in arms, left one worse than right. Oddly enough the right lower leg worse than the left one. Go figure. Have been dropping things alot. Have to concentrate when holding something. Wore my dinner a couple of weeks ago, but the dogs thought that was great!! I sincerely appreciate all of the thoughts and prayers from you folks. I'll stick around and keep you posted. Thanks again.

Re: Update

Dennis B. on 3/11/02 at 16:26 (076193)

Just one last parting comment. I didn't want to divert the attention of you people away from TTS. Please don't let my condition confuse you. A special thanks to the administrators of, and contributors to, this bulletin board. I feel guilty in getting off of the subject matter intended herewith. Like I said earlier, I review this board daily due to a previous diagnosis of TTS and in the event that it looks like someone may have symptoms that mimic mine, I will most definitely throw in my two cents worth. Once again, thanks to all for the kind and encouraging words. Focus on the TTS, it's symptoms, causes and treatments and whip this thing once and for all. GOOD LUCK TO YOU ALL!!!!!!!!

Re: Update

BrianG on 3/11/02 at 21:11 (076218)

Hi Dennis,

As part of your treatment, you may want to see a pain management specialist. There have been a lot of advancements in the past 5-10 years. It's a whole new ball game now. Good luck, and I would hope your currant docs could give you a referrel.

BrianG

Re: Update

Julie on 3/12/02 at 02:30 (076236)

Dennis

There is no need for you to worry about confusing anybody here. The heelspurs board is a broad church, and there's room to take a broad view. It has become very inclusive! Please do not feel guilty.

I'd like to add something to my previous post, which I hope may prove helpful. I do realize that you have a very serious condition, and difficult decisions to make about treating it. In your situation, however, you should do all you can to encourage your immune system. Even if, as your consultant says, the damage is irreversible, you may be able to slow it down.

There has been a good deal of research to show that the simplest of yoga practices - breathing exercises, relaxation and meditation - alleviate the stress that so depresses the immune system, and in doing so they enhance immune functioning. When I had breast cancer eight years ago, yoga, which by then I had been practising and teaching for years, was a vital factor in my healing, and continues to be so. I now teach these simple practices to others who have cancer, and they have also been greatly helped by them.

I think you would also find them helpful in dealing with your pain, both physically and emotionally, and with the inevitable anxiety and unhappiness and overall stress.

I wouuld be very glad to do whatever I can to help you, so if you want to talk about it please email me: juliefried?clara.co.uk.

I wish you all the best for your healing.

Re: Update

Julie on 3/12/02 at 02:32 (076237)

My email is (email removed). I've put it in the email box too, in case it doesn't work again. My keyboard sometimes does strange things.

Re: Julie

wendyn on 3/12/02 at 07:36 (076242)

I just thought I would let you know that I still think you're one of the most amazing people I've ever 'met'.

Re: Wendy

Julie on 3/12/02 at 07:52 (076244)

Thanks Wendy. You take my breath away. I think you're pretty wonderful too.

.

Re: Update

Dennis B. on 3/09/02 at 16:42 (076063)

OOPS. Meant what you have done FOR me, not to me. Sorry about that.

Re: Update

wendyn on 3/09/02 at 19:26 (076074)

Dennis - that's awful, but please don't feel as though you have to disappear!! If you get anything out of the board, support - the odd bit of humor or suggestion on pain relief...it really doesn't matter what your diagnosis turns out to be.

What causes vasculitic neuropathy? I have never heard of it. What drugs do they want to put you on? Are you coping okay?

Re: Update

Dennis B. on 3/10/02 at 14:24 (076120)

thank you for your kind words. I haven't done a lot of research yet, but basically my auto-immune system is wacky. The cells in the blood stream, leuko(something), T cells and so forth are attacking good things, thinking that they are bad things, basically 'self-destructing' would be an exagerated, I hope, description. In my case, thus far only the nerves are involved, they are being destroyed. It is possible that this condition could deteriorate whereas the organs could also be attacked. The dr. indicated that I am very far along and he feels the damage is not reversible. He indicated that the drugs would AT BEST be a 50% chance of halting it's progress. The specific drugs are Prednisone and Cyclophosphamide. The latter of the two is normally used to treat cancer patients whereas the first one is an oral cortisone. The cyclophosphamide has a possibility of worse side effects than the Prednisone. The dr. told me that I could not name an organ in my body that would not be subject to side effect. The side effects that I can remember him naming off, and there were more, are: cataracts, weight gain, moon or pie face, osteoporosis(sp?), organ damage, diabetes, high blood pressure, stroke, hodgkins disease,etc. Basically they would break down my immune system which obviously means infections, colds, flus, and he mentioned something about the skin thinning or turning color. As to coping, it's a bit early on and the shock still needs to wear off. I now have a handicapped parking permit and the dr. has urged me to apply for social security disability. So, the best I can hope for is to stay 'as is'.

Re: Update

Donna SL on 3/10/02 at 17:00 (076124)

Dennis,

I am very sorry to hear about your diagnosis.

Do you have a copy of your original ncv test that was done prior to your surgery? I'm just curious if the sural nerve was tested at the time, along with the other nerves in the the foot, and ankle, and if any abnormalities showed up on that nerve too?

I agree with Wendy, please keep coming to the board for support, etc.

Donna

Re: Update

Julie on 3/10/02 at 17:27 (076126)

I agree too, Dennis. What you're up against really does sound awful, and you'll get friendship and support here, so do please keep coming. I also suggest you read the message John H has just posted on the Treatments board, an extract from a book telling how meditation helped a man to deal with extreme foot pain. I know your situation is different, but I've taught yoga, meditation, breathing exercises and relaxation for many years and I know they are helpful in coping with an apparently disastrous situation. I have a feeling you would get something you need now from them. Perhaps when the shock has worn off you can look into them. Please let me know if I can help.

Re: Keep in the fight,Dennis

Tammie on 3/10/02 at 19:18 (076142)

Dennis , first let me tell you how sorry I am to hear of your troubles. But my friend you stumbled into the best place in the net for support and help. I really mean it the people here are simply excuse me if i use my kids words but awesome! The best of the best.

I was reading what you have wrote and interested as some of what you say sounds like what my hubby has been told. Only he has been dx with Rum. Arthritis. Some of what he has been thru I see in what you post the attacking of the immune system and the side effects from meds that can destroy liver and other organs. The knowing that there can not be a what one would say :cure' But he can go in remission types. They have put him on some very strong immune system inhibitor. Also he takes a medicine that is used to treat cancer.They put both of thease together and have added a few things with it. He is signed up to recieve newer treatments but there is a waiting list. I only mention this as some of what you have wrote sounds familiar to what happened to him four yrs ago when he was first dx tho his does not affect nerves as of yet, more the cartlige and joints , and creates many other problems. He is now waiting for a mri report to see if he needs a new knee as it is bone on bone, this is his good knee. I know this is not exactly what you might have but it seems like how he started out.It was a whim that they did a blood test for the R Arthritis .

He was terrified and so was I as he was only 39 and had his whole life in front of him. This put him down alot like you sound about now. But the good news is this, He is a fighter, he has accepted what he cannot change and he of course has his down days and weeks and months but he has learned to keep going and to do what he can and enjoy it when he is capable. I can tell you this it is a long rocky road and there are times he quits fighting and the light burns dim, but something or someone helps him back up and back into life. I just want to tell you please dont lose hope yes you are scared and angry and feeling a million different emotions at this time, but I do hope that you have a loving family and some support as this is what will keep you on the right side of the road.

I do hope that you stay positive and eager to fight this as life tho may be changed somewhat, you can take and make things better for yourself.Positive thinking and lots of support! Please take a deep breathe and maybe take Julie up on her wonderful offer! And take a little step at a time, till you feel stronger. We are here for any support that we can give! Hugs to you and will keep you in my prayers!

Re: Update

Dennis B. on 3/11/02 at 14:05 (076180)

I have no copy of the ncv tests. the sural nerve biopsy was sort of a last resort as the neurologist was unable to diagnose the underlying cause. Most people that have had the nerve biopsy have not gotten results that indicate the cause, this time I was one of the lucky ones. Side effect of the biopsy is numbness, that I am told probably will not go away. It starts from the middle of the heel and goes around the outside of the foot to and including the small toe,in my case only the lower 1/2 of the toe. Thought it would help since I wouldn't feel pain in that area, but not true. Pain is in arms, left one worse than right. Oddly enough the right lower leg worse than the left one. Go figure. Have been dropping things alot. Have to concentrate when holding something. Wore my dinner a couple of weeks ago, but the dogs thought that was great!! I sincerely appreciate all of the thoughts and prayers from you folks. I'll stick around and keep you posted. Thanks again.

Re: Update

Dennis B. on 3/11/02 at 16:26 (076193)

Just one last parting comment. I didn't want to divert the attention of you people away from TTS. Please don't let my condition confuse you. A special thanks to the administrators of, and contributors to, this bulletin board. I feel guilty in getting off of the subject matter intended herewith. Like I said earlier, I review this board daily due to a previous diagnosis of TTS and in the event that it looks like someone may have symptoms that mimic mine, I will most definitely throw in my two cents worth. Once again, thanks to all for the kind and encouraging words. Focus on the TTS, it's symptoms, causes and treatments and whip this thing once and for all. GOOD LUCK TO YOU ALL!!!!!!!!

Re: Update

BrianG on 3/11/02 at 21:11 (076218)

Hi Dennis,

As part of your treatment, you may want to see a pain management specialist. There have been a lot of advancements in the past 5-10 years. It's a whole new ball game now. Good luck, and I would hope your currant docs could give you a referrel.

BrianG

Re: Update

Julie on 3/12/02 at 02:30 (076236)

Dennis

There is no need for you to worry about confusing anybody here. The heelspurs board is a broad church, and there's room to take a broad view. It has become very inclusive! Please do not feel guilty.

I'd like to add something to my previous post, which I hope may prove helpful. I do realize that you have a very serious condition, and difficult decisions to make about treating it. In your situation, however, you should do all you can to encourage your immune system. Even if, as your consultant says, the damage is irreversible, you may be able to slow it down.

There has been a good deal of research to show that the simplest of yoga practices - breathing exercises, relaxation and meditation - alleviate the stress that so depresses the immune system, and in doing so they enhance immune functioning. When I had breast cancer eight years ago, yoga, which by then I had been practising and teaching for years, was a vital factor in my healing, and continues to be so. I now teach these simple practices to others who have cancer, and they have also been greatly helped by them.

I think you would also find them helpful in dealing with your pain, both physically and emotionally, and with the inevitable anxiety and unhappiness and overall stress.

I wouuld be very glad to do whatever I can to help you, so if you want to talk about it please email me: juliefried?clara.co.uk.

I wish you all the best for your healing.

Re: Update

Julie on 3/12/02 at 02:32 (076237)

My email is (email removed). I've put it in the email box too, in case it doesn't work again. My keyboard sometimes does strange things.

Re: Julie

wendyn on 3/12/02 at 07:36 (076242)

I just thought I would let you know that I still think you're one of the most amazing people I've ever 'met'.

Re: Wendy

Julie on 3/12/02 at 07:52 (076244)

Thanks Wendy. You take my breath away. I think you're pretty wonderful too.

.