maryfw

neuropothy?????????

Maxine, you and your family are in my prayers right now. I know that the Lord never gives us more that we can bear but sometimes it sure seems like he takes to the absolute edge of what we can bear. I have come to think of it this way, he will not give me more to bear than I can handle with his help. I definitely cannot bear it by myself or without the support of others. mary

Well, my husband will be admitted on Sunday to have surgery on Tues to have his gallbladder removed. They have to take him off the blood thinner for a couple of days then the surgery then get his blood regulated again so he can come home. It could be that his gallbladder was what started this whole process to begin with atleast most of the pain. we still dont know why he had blood clots but we know that his current pain is from the gallbaldder (stones, sludge and deformed). So we are in an odd way looking forward to the surgery. mary

Have you tried sleeping propped up somewhat on pillows? The reason I ask is because if it only does this while you are lying down you might try tilting the head of your bed up or using pillows. Just an idea. mary

I am so sorry to hear about your sister and will keep your family in prayer. My husband has been in and out of the hospital for two months because of PE's and DVT's. It is so scary because they did all the genetic testing and found absolutely no reason for him to have had the clots. He is on coumadin now. In the hospital he was on IV Heparin and then sometimes shots in his stomach too of another medication that I cannot remember the name of at the moment. Also they found my husband has the small hole in his heart that was mentioned earlier. They check for that by doing an echocardiogram with a camera they put down your throat. It can be closed with surgery and we are waiting for that to be done in about 6 months after he has been on the coumadin for 6 months. I know how truly scary this is and my heart goes out to your family. I will be thinking of you all and praying as well. mary

For me the birth control helps because it keeps the hormone levels much more level. Without the big swings my symptoms are much better. mary

Ok. Do you start getting more fatigued a week or two before you are due for your next shot? I have been dragging worse than usual lately and I am due for a shot. I also got moody, small migraines which I headed off with Imitrex and fatigued. Can I get the shot a couple of weeks early? mary

Well we have definitely found out that my husbands gallbladder is causing his chest pain. So he probably never had chostocondritis. I have read that it can feel like a heartattack as well. He will see a surgeon next Wednesday to see if they can do surgery now. The complication is that he is on the blood thinners because of the blood clots he had 6 weeks ago. We want them to do the curgery NOW because my husband is in sooooooooooooooo much pain and is miserable. I feel like life will be so much better if they just get this part over with. mary

This is my first time meeting you and I am very moved by you and your story. I will definitely pray for you that things continue to go well with the doctors and a plan is put in place that will help you. A new friend, mary

Congratulations!!!!!!!!!!!!!!!

How severe is the pain? My husband was told he had chostocondritis but it was so severe that he was finally put in the hospital and told he had pulmonary embolisms. Now he is still having severe chest pain even though his clots are gone and they have found out his gallbladder has stones and sludge and needs to come out. Gallbladder issues can also feel like a heart attack too. He is also being sent to a rheumatologist. Some other disorders like Lupus can cause chest pain so there are all kinds of things we are finding out that can be his problem and not just chostocondritis. If it continues and is severe dont stop looking for answers. mary

I am sorry to hear you have Mono. My son had it last year (17 yrs old) and he has NCS like I do. He did fine after it went away though it did take quite awhile. mary

I am still not 100% convinced that his gallbladder is causing all his pain. A great deal of his pain is on the left side of his chest and I have seen nothing to indicate that pain on the left side is from a gallbladder issue. I guess we will just wait and see. I know that with Lupus you have flares and then good periods. If this does not take care of the pain then I will definitely push forward with that. Again, i dont want to tell my hubbie I think he has Lupus if I am WAY Off base but I will keep my eyes and ears open to see what develops. Dont get me wrong I want it to be his gallbladder but I will be vigilant. That is my job as his wife................

Well we have not seen a rheumy yet but today they found out the his gall bladder is junk. Gall stones and sludge and it is deformed. Dont know yet what they will do because he is on blood thinner. He will have to come off the blood thinner to have surgery so it may be 6 months before he can have it removed. The doctor did say that there is a medicine (VERY EXPENSIVE) that can dissolve the stones until he can have surgery. I guess the doctors will have to decide which is more important right now, the gallbladder or the blood thinner and I bet the blood thinner will win. but this can explain alot of the chest pain that he is having so maybe it is nothing other than the gallbladder. I am so glad I did not tell my husband that I thought he had Lupus. mary

I was reading the post and had never heard of an "electrophysiologist" but I searched in my town and I was happily surprised that my cariologist is an electrophysiologist. She has taken good care of me and that makes me feel even better about her being me doc. mary

Depo is not working for me. I am about 3 weeks away from my second shot and I will ask my doc to try something else. I started spotting two days ago and along with that came the migraines and bad mood swings. I feel so much better without the hormone fluctuations. mary

I heard that thyroid problems can make you sound hoarse as well. Anyone know a good website for Hashimoto's thyroid info? mary

he is coming home from the hospital today so we can make an appt to see our doc and start running the tests. For some reason at our hospital they dont have rheumatologist that come to the hospital so we have been on hold for a week. The symptoms do seem to really fit though. 1. chest pain/pleuresy 2. swelling/joint paint 3. headaches 4. clotting issues/ p.e's and dvt's 5. he had and elevated creatinine and potassium on one of his first visits which indicates kidney problems 6. abnomal liver labs on the last hospital stay 7. neuropothy in his feet which could indicate vasculitos 8 stroke symptoms last time 9 high bp which he has never had before 10 then his bp crashed Anyway I am on my way to get him from the hospital and I will then call our doc. mary

Oh My!!! I just went to that website you recommended and I looked up Lupus and it fits. I know I should not jump to conclusions but it fits. The chest pain, blood clotting issues, pleurasy. Pray for us. mary

His symptoms are chest pain and tenderness that they dont think are related to his blood clots. They believe he has some other muscualr skeletal problem going on. We hope he gets to come home today. If his blood levels are theraputic then he can come home. When you are on heparin it is sooooo extremely tricky. To start with his blood was too thick then a couple of days later his blood is dangerously too thin. Hope it is right today and he can come home. The other issue is that he seems to be extremely sensitive to the pain meds and has been unable to keep down any food. So they have to get him on a pain management system he can tolerate. He was on a duragesic patch and that made him throw up. Morphine makes him throw up. Now they are trying him on percacet but he is afraid to take it too. mary

I have been on it for 2 1/2 months and I think it is going to work for me. I had a period after the first 28 days and then spotted for 3 weeks but did not have the 2nd month period and now no spotting. I get my next shot June 12 so I will give it another 3 months but think that this might be the answer for me. mary

The doctors want to refer my husband to a rheumatologist but that can take awhile and I would like to do some research on his symptoms. Does anyone know any websites other than webmd to do research on muscular skeletal issues/ thanks mary

I am so sorry to hear about this. I hate hospital visits and even worse when it is your child instead of yourself. Hang in there and keep calling for help. You are in my prayers. mary

Thank you for all your prayers and kinds words. There is still something they have not uncovered yet with him. He is still in soooo much pain. Back on the pain pump. They want him to see a rheumatalogist. They think he has something muscular skeletal also going on but that can not be investigated in the hospital. His blood level is back to 2 which is theraputic but the pain is keeping him in the hospital. thank you all so much, mary

I hate it when "anxiety" is the conclusion that is jumped to just because the doctor doesnt have an explanation. My husband has been in and out of the hospital for a month now with PE's and DVT's and trying to get his blood regulated. Everytime he is in extreme pain they say "He is very anxious". Well if you had blood clots in your lungs and were in extreme pain and your bp bottomed out in the ER..............you would be anxious too. Sorry to vent just tired of haering "anxiety". so keep fighting the fight and dont give up. I am the advocate for my husband and it helps having someone else besides the patient saying NO. mary