Guest guest Posted February 15, 2002 Report Share Posted February 15, 2002 Hi Debbie: Welcome to the group, sorry you had to join. When I was a kid I used to get red itchy welts only on the insteps of my feet whenever I wore socks with nylon in them. I now only wear cotton socks so I don't have the problem anymore. Just my .02 cents. > Hello, I am new to the group. > I had these large hard ITCHY nodules over my toes that are driving me > nuts! They are mostly over areas I've had foot surgery and they come > and go with no rhyme or reason. My doctor is baffled. I was on > Claritin, then switched to Zertec, then my Immunologist/Allergist > switched me to Clarinex. He also put me on 5 days of prednisone, but > I'm through with that, and I'm using Zonolan cream (apparently the > main ingredient is a trycyclic) and 2.5% prescription strength > hydrocortisone cream (which I've been told is dangerous to use too > much of because it thins the skin). Within two days the nodules have > doubled in size and the swelling in my whole foot has gotten worse. > I've tried to see if it comes and goes with the cycle of my period -- > and I think there is some connection -- and will be getting tested > for that. I have been tested for autoimmune disorders which came back > negative. I have increased my flax seed oil thinking that would help - > - but I'm just getting worse. I also take thyroid replacement - > Synthroid. And have just started clonodine for the foot nerve pain. > But the itchy started before this med. addition. > Can anyone tell me what else could be causing this? My skin is really > dry on my whole food -- no matter how much lotion I put on. But, if I > put on greasy lotion and " seal in the heat " then everything worsens > too. I'm so uncomfortable I'm not sleeping and just icing the area a > lot which is not good for the skin either. The skin in this area is > already compromised some because of the surgeries and my Raynauld's > and erythromelalgia (extreme flushing and blood engorgement causing > them to heat up). > I would greatly appreciate any suggestions. > Thanks, > Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2002 Report Share Posted February 15, 2002 Hello and welcome, Debbie. You've got me baffled! How long has this itching been going on? Did the doctor say it was a form of urticaria? Have any of the meds helped to relieve your symptoms? How long ago was your foot surgery? Air hugs, Jackie Life is tough, but I'm tougher. _________________________________________________________________ Send and receive Hotmail on your mobile device: http://mobile.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2002 Report Share Posted February 15, 2002 Hi Debbie, Welcome to the group!! I am sorry to hear you have been suffering. Have you tried Aveeno products. They are very helpful. Also there is a cream (non steriodal) called gastrocream which your doctor would have to prescribe and only a few pharmacies in the US fill (but worth it) that might help. Have any of your doctors made a connection with all of your ailments? Have they ever said one is related to the others? Is your foot the only area affected? Maybe with some more details someone can offer some more suggestions. Love, ~Alena's Mom new to the group > Hello, I am new to the group. > I had these large hard ITCHY nodules over my toes that are driving me > nuts! They are mostly over areas I've had foot surgery and they come > and go with no rhyme or reason. My doctor is baffled. I was on > Claritin, then switched to Zertec, then my Immunologist/Allergist > switched me to Clarinex. He also put me on 5 days of prednisone, but > I'm through with that, and I'm using Zonolan cream (apparently the > main ingredient is a trycyclic) and 2.5% prescription strength > hydrocortisone cream (which I've been told is dangerous to use too > much of because it thins the skin). Within two days the nodules have > doubled in size and the swelling in my whole foot has gotten worse. > I've tried to see if it comes and goes with the cycle of my period -- > and I think there is some connection -- and will be getting tested > for that. I have been tested for autoimmune disorders which came back > negative. I have increased my flax seed oil thinking that would help - > - but I'm just getting worse. I also take thyroid replacement - > Synthroid. And have just started clonodine for the foot nerve pain. > But the itchy started before this med. addition. > Can anyone tell me what else could be causing this? My skin is really > dry on my whole food -- no matter how much lotion I put on. But, if I > put on greasy lotion and " seal in the heat " then everything worsens > too. I'm so uncomfortable I'm not sleeping and just icing the area a > lot which is not good for the skin either. The skin in this area is > already compromised some because of the surgeries and my Raynauld's > and erythromelalgia (extreme flushing and blood engorgement causing > them to heat up). > I would greatly appreciate any suggestions. > Thanks, > Debbie > > > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > If you do wish to unsubscribe then you can click on the following link: > urticaria-unsubscribe > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > > This list is in the service of those who suffer from Chronic Urticaria (hives). We strive to support and lift each other as a worldwide cyber-family. > > We share whatever needs to be shared to help one another in our struggle with Chronic Urticria. Information provided in this forum is not to be taken as medical advice. Always consult your health professional before trying anything new. > > Any posting that is off the main topic of Chronic Urticaria, we post with a prefix of NCU -. This is done out of respect for those who do not wish to read such postings. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2002 Report Share Posted February 15, 2002 Do you know what is in this gastrocream? My doctor prescribed Zonolan which is a topical trycyclic. That helps a little. I also used 2.5 hydrocortisone -- but I've heard that can thin the skin. I do feel itchy all over by whole body sometimes but these hard itchy nodules are only on my toes. They are so hard you'd think it was bone except it not. It there one day and gone the next -- so weird. M biggest problem is that the doctors don't know what's going on with me. I've had several autoimmune testing, allergy testing, neurological testing, etc., and even the best doctors at Hopkins can't figure it out. They say I have autonomic neuropathy, erythromelalgia, peripheral neuropathy, Reflex Sympathetic Dystrophy, Raynauld's etc....depending on which doctor you ask - lol. They can only offer medications and a morphine pump - which I'm not willing to do yet. I've actually had 20+ surgeries on my feet including peripheral nerves stimulators implanted and removed. This itching though is new within the last year. That's why I wonder is there is something progressing disease wise or if my hormones have gotten all out of balance. It's so frustrating to keep searching for answers. Exhausting when the research is all up to me - and then I have to find a doctor willing to take on such a complicated case. Thanks, Debbie Hi Debbie, Welcome to the group!! I am sorry to hear you have been suffering. Have you tried Aveeno products. They are very helpful. Also there is a cream (non steriodal) called gastrocream which your doctor would have to prescribe and only a few pharmacies in the US fill (but worth it) that might help. Have any of your doctors made a connection with all of your ailments? Have they ever said one is related to the others? Is your foot the only area affected? Maybe with some more details someone can offer some more suggestions. Love, ~Alena's Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2002 Report Share Posted February 15, 2002 I have had the foot pain and surgeries for about 7 years. The itching has come and gone for over a year now. It seems to affect the areas of my toes that have had surgeries and are compromised circulation wise. They are always either cold and blue or hot and bright red. They obviously itch worse when red but my feet can be all cold and blue and just the nodules raised and itchy red. I used the word hives with the Immunologist/allergist but he said it was more then hives because they were so hard and raised. It almost feels like bone but it's not. Antihistamines have helped. I was on Claritin but my doctor switched me to Clarinex because he said it was much stronger and easier on the liver. He gave me 5 days of prednisone and I don't know if it helped much or if that was even long enough to know. The hydrocortisone cream and Zonolan creams help a little but not enough. I'm at a loss here. I'm going to go buy some Zantac and try that. I don't understand how that could help - but I'll give it a try. My last foot surgery was in October - butnot on the area where I'm getting the itchy bumps. That area hasn't been operated on in over a year. Thanks, Debbie Hello and welcome, Debbie. You've got me baffled! How long has this itching been going on? Did the doctor say it was a form urticaria? Have any of the meds helped to relieve your symptoms? How long ago was your foot surgery? Air hugs, Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2003 Report Share Posted May 15, 2003 Donna, welcome to the group. I just saw your mail indicating you leave in long Island. Dr Palter one of the A-list drs is also in long island. His office is in syosset. His wait time is usually not that long and they could get you in earlier if there is cancellation. You may also want to give them a call. My opinion will be to postpone the surgery and see an A list dr although I know this decision will be hard for you but unless you are sure the dr knows what he is doing. Just to let you know that the chances of success is higher if your first surgery is done by an asherman's specialist. Goodluck......Gladys Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2003 Report Share Posted May 15, 2003 Donna, I'm a relatively new member to the group (a couple of months now) and I'm happy to say I've recieved such valuable advice and support from everyone here!! Your story sounds SO MUCH like mine! I completely understand feeling loyalty towards your Dr. who's been great to you for four years - I feel the same way about mine- but it doesn't sound like he's the right one to treat you at this point. You are so lucky being in Long Island because you have your choice of Dr. Palter and Dr. Copperman who are both very talented in treating AS and have many success stories within this group. I too was going to let a local " expert " RE do a diagnostic hysteroscopy because I wanted answers ASAP and I felt silly traveling to NY to see a specialist when I hadn't even been diagnosed. Finally, it all sunk in and I realized I needed to see Dr. Palter(he's covered by my insurance - Copperman's not). I was delighted to get an appt. within the week and felt so much better knowing that I would be seeing someone who could help me. Even more importantly I had confidence that he wouldn't do anything to make matters worse! I would be happy to share my whole experience with you, but a quick summary is... Dr. Palter attempted an SHG with similar results to yours. He was able to make a small hole and get saline in, but wasn't able to see adhesions b/c my whole uterus was filled with a piece of retained placenta (NO D&C though!)!!! One week later he performed a hysteroscopy/laparoscopy. Two weeks later I had a period (my first since becoming preg in October). I go back next week for an SHG and HSG (because we couldn't determine if my tubes are open or blocked). I won't lie and say this has been an easy process, but having the confidence that I'm going to the best of the best has made it much easier to bear and given me hope that I will be able to overcome this. My advice would be don't risk your future fertility over loyalty to your current dr. - since you are so close go straight to Dr. P or Dr. C and get on the road to having this all behind you. Whatever your decision is I wish you the best and would be happy to answer any questions you have. Jen Czap Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2003 Report Share Posted May 16, 2003 Donna, I'm so sorry to hear about your loss and your difficulties since then. It's so great that you found this group relatively early in your treatment. My story is similar to yours. I developed AS after a D&C for a missed miscarriage last summer. I did get my period afterward but it was extremely light and continued to get lighter over the next few cycles. It's so difficult to deal with this diagnosis after a loss! Like adding insult to injury. The best advice I can give you is to see a specialist. I made the mistake of letting my RE perform my surgery. For me, I was just so happen to have found someone who had heard of Asherman's and was willing to concede that I had it, that I let him go ahead and treat me no questions asked. I scheduled an operative hysteroscopy but didn't find out until afterward when I saw the surgery report that he had actually performed a D&C! The two months of hormones after that were excruciating because I was waiting to see if he had done more damage. I am now seeing Dr. Palter on Long Island and he is very good. Please don't make the same mistake that I did! Best of luck to you Donna! Haley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2003 Report Share Posted July 9, 2003 I am 40 years old and my husband is 42 this month. We live in Minnesota. I have been trying to get pregnant for 8-9 years now. We want nothing more than to have a child of our own. I first was going threw my OB and when he couldn't help me any long (2 miscarriages later, Hyst/lap, endometriosis and a few rounds of clomid and inseminations) he gave me a list of fertility doctors to go see. I picked one who had helped my brother and sister in-law. After my 4th miscarriage (1st with the fertility doc) he said that we needed to take a look at other reasons why I keep miscarrying. So he did an HSG. He said I had all this stuff inside and wanted to do a another D&C. When he did the D&C and puncher my uterus. I was then sent to a specialist who did 3 D&C's, 2 which had balloon implants. I was sent back to the fertility doc after being given a clean bill of health. Stupid of me to go back to the same doc who caused more surgeries and to think I could get PG and carry full term. I once again miscarried this past Thanksgiving and went to my old OB to have the D&C done. He then wanted me to go back to my fertility doc. At that point my husband of 15 years (known him for 24) and I started to gather all of my medical records and went over them. It turns out the I was diagnosed with Ashermans from the fertility doc and he never told us. We also found that because of all the D&C's that my lining is bad and damaged. So now after all my research I feel I cannot ever have children because of all the D&C's I have gone through. And having Ashermans' I know it has come back after the last D&C. I want to try and get better to see if it is possible to carry a baby. I need to find a specialist to help me. On www.ashermans.org they said I should join the group and maybe able to find that doctor. My relationship is almost come to end because of the stress and trauma. What else can I tell you. I need some help, support, suggestions and some good words from women who have been through this mess. My hope is to find a happy ending, which would be to have a baby. Any suggestions are more than welcome. Thank you in advance! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2003 Report Share Posted July 9, 2003 Hi I'm sorry for all that you have been through. Your message caught my attention b/c I too did not find out that I was diagnosed w/AS until I read it on my records. I gathered my records to bring to a new Dr & there it was on the HSG report! I was/am furious that my RE who preformed my 2nd D&C after my m/c never told me. she just told me to continue trying even though I had scar tissue & a very thin lining! I cringe when I think of it. I found a great A list Dr through this group & have learned so much in the past few months. There are many women on this board who have had successful pregnancies post AS. I am hoping to be one of them : ) Good Luck. D. Quote Link to comment Share on other sites More sharing options...
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