Maxine

Hi BellaMia, We used to have a local support group here for about 3 years. Maybe try checking with your local library, or church. Some churches have small halls, or basements that are used for wedding/baby showers and other events----------------why not a support group meeting.... See if you can find someone to run the group with you, as it can be exhausting to do by yourself. Maybe someone who is supportive, but doesn't have dysautonomia, so they can take over on days your feeling bad. Your such a kind and thoughtful person! Maxine :0)

Erika, Your symtoms sound like something to be investigated further. I had my nose run recently like that, almost like water coming out. I had a bad headache that day, but it wasn't a typical tension headache. IT felt like pressure, and my ears feel full all the time. I have a headaches nearly every day now, and it's usually more near the base of my skull, and into my ears. I have edema near the base of my neck on the right side, and also have fluid in mastoid area on the right, but a full ENT workup showed no past or present infections for middle ear. I investigated CSF leaks on and off for several years, as this flid has been there for 5 years. A CSF leak in the dura can give this appearance. "CT findings associated with cerebrospinal fluid (CSF) leaks include fractures or other bone defects; meningocele; focal fluid accumulation in the ethmoid air cells or in the frontal, sphenoid, or maxillary sinuses or mastoid air cells; and, sometimes, pneumocephalus." Quoted from link below; http://emedicine.medscape.com/article/338989-imaging You can see by my signature line, and many of my other posts that I have cervical cranial instability (CCI) secondary to my EDS. My POTs is secondary also. I was diagnosed with congenital cervical spine stenosis in 2002 along with a small posterior fossa. I also have several herniated or bulging disks. Yesterday morning I woke up with a horrible pinching and stabbing pain in upper thoracic spine, and my neck had pain beyond my usual, and the base of my skull felt like someone came up behind me and hit me in the head. I was struggling to walk, and my heart did a big THUD when I moved quickly to get my ringing cell phone---or was it something else---I'm trying to remember. Anyway---I moved quickly whatever it was. I was a mess, and my speech was slurring more then my usual amount of time. I usually slur more at night. I have no idea what I did in bed to wake up that way. I did noticed I woke up once on my right side, and I normally slepp on left because my head doesn't pull away from my neack as badly. When I went to cincinnati to see the orthopedic surgeon, he showed the 3D CT scan to me, and there's a measurement device on there that measures the different areas of the spine. The C1-C2 area is 7.9 mm off on the right, and 7.5 on the left. My left vertebral artery is missing in my brain, but not my neck, so when I asked about this, the orthopedic surgeon said the CCI is affecting this, and likly cutting off the blood supply, thus the enlarged right vertebral artery. DESPITE all of this going on, many NSGs, and one other orthopedic surgeon has said absolutely nothing is wrong....and in fact my last radiology report of that same CT that had the CCI clearly identified by the othopedic surgeon in cinn. said there's nothing wrong with my cervical spine despite many other CT and MRI reports showing pannus growth on odontoid bone, broad based disk bulge on c1-c2, many other herniated/bulging disks, mastoid fluid ect. 2 reports said congenitally small cervical spine canal, and posterior fossa. The thoracic spine MRI was said to be normal by another radiologist from the same hospital.-----and of course this hasn't been the case on other reports. My husband can clearly see my upper thoracic spine near my neck curves to the right. I feel that something isn't right with my CSF fluid. Especially since NIH confirmed the CCI as well in 2008. In 2004 a CINE MRI report said my CSF of partially blocked posteriorly as compared to anteriorly. My instability is rotational, and these measurements were based on my head turned to the left and right. The gap should not be more then 1mm. I can not walk for then 10 to 20 minutes without my body starting to shut down from OI, and also getting very stiff, disoriented------along with severe overall body weakness. I don't think doctors are ever going to take this seriously. My geneticist is trying to find ways for doctors to better understand the link between EDs and CCI. I have to go back to Cincinnati for another 3D CT because the one he looked at that was done locally wasn't good quality, and the CCI could be even more severe then what he reported. I'm definately thinking this could cause CSF issues for me.........but docs here won't listen, and it's causing other complications with the testing I need one on my GI system----(family history of cancer). I called cleveland clinic, and they are going to help with this. I hope you get someone to investigate this further for you! Maxine :0)

BellaMia, My thoughts and prayers go out to you and your family. How nice it was that your mother was able to talk with you! You have such a gentle and kind spirit, and I pray for God to continue giving you strength. BIG HUG to you. Maxine :0)

I have it too, and sometimes I look 8 months pregnant. Unbelivable bloat! It's worse at night. It's the best in the morning. constipation is my middle name----and the probiotics don't work! No they don't............not at all. I'm going to the Cleveland Clinic for a GI workup due to both family history of Colon Cancer, and other GI problems..... They are going to set me up with the best doctor they have for colonoscopies so I can have mine done without sedation, or very little sedation. My body can't handle the effects from sedation right now, as I have too many other issues related to EDS, POTS, and spine instability going on. Local Docs won't do a colonoscopy because of problems with both my POTS and cervical/cranial instability. I'm scared, but happy to have this investigated further at the same time. I did have an lower GI 2 1/2 years ago, and a upper GI soon after that. Recently they spotted some liver lesions, but said it's probably hepatic cysts. I know I had one cyst for many years----but once I heard about more, I said that's it, I want to get this over with----full GI workup.............. The nurse I spoke with at the CC was very nice, and said these doctors are very familiar with POTs patients, and also likely to know about EDS. She admitted she didn't know a lot about EDS---but assured me they would take good care of me. That's what I want to hear from a Nurse or Doctor! Maxine :0)

A Doctor at a famous Clinic said they can be hard on epople with POTs, and other nervous system disorders. I'm thinking they can CAUSE nervous system problems------- ..............just saying.... Maxine :0)

Julie, I just read your FULL post. I only skimmed it yesterday, and I see your son had a problem during endoscopy. This is very serious, and doctors need to take this much more seriously then they do. My PCP was taking it seriously, but because it's been so difficult to get this documented on radiological reports, I think he's starting to wonder. He does have the clinical notes from the orthopedic surgeon, and NIH saying that I have CCI based on what they saw on my films--MRIs, and CT scans. It's called Axial Rotation Instability-----this is the true defination. This is one of the reasons why my PCP and GI doc didn't want to do a colonoscopy, the GI doc was afraid of what sedation would do (he was worried about the POTS), and the PCP was worried about the CCI. However, I wonder if my PCP will take the CCI as seriously now. He will be getting a clinical report from my orthopedic surgeon reporting the actual measurements of the instability. Well in the midst of typing this post the Cleveland Clinic called, and explained my situation to them, and the nurse was very understanding, and said their GI docs have dealt with POTs patients a lot, and she didn't dismiss the EDS issues at all. She said the GI doc is more likely to know more about it then she does, and they would see to it that a colonoscopy would be done the way I NEED it done. She said he's done many, many colonoscopies without sedation, and he does them so well, that many of his patients have little or no discomfort. She said they are familiar with complicated patients. OK-------hopefully this is all true. You all know how it is when you hear great things about a medical facility or physician, and you end up finding out differently. Maxine :0)

Ok, I thought I would bump this to see if there might be any responces the second time around. I'm assuming those of you who have dealt with CCI know this is a very difficult journey. I need support more then ever. I've been accused of "having this in my head" for an extended amount of time----much longer then I imagined because I have so much documentation right now----EVEN NIH, but it doesn't seem to matter. Something feels strange...I can't quite put my finger on it.... Maxine :0)

Hopefully there will be more information on CCI at the EDNF conference coming in July. I'm glad I'm going. The orthopedic surgeon I saw on Tuesday said I had 7.9mm of instability on the right, and 7.5 on the left. This is with my head turned on a CT scan. and he saw this on a poorly done 3D CT. Remember when i said my vertebral artery was missing on the left. Well, he said it's likely the blood flow is cut off there in the C1-2 area, and the right vertebral artery is over stressed trying to compensate---not a good situation with the poor vascular tone with EDS. He gave specific instructions to the CT tech----BUt she did it wrong anyway. He wants me to come to Cincinnati to do another 3D CT there. He does them with the head turned to the right and left to catch this type of instability----horizontal instability. The gap with head turned is only supposed to be 1mm. He's wondering what he'll see with the 3D CT scan thats done RIGHT! I told him to send all documentation to my PCP, and I will forward this to any other doctors I have seen who have dismissed this. I hope all of you who deal with this can find the help you need. This is a very misunderstood condition, and as Julie said very difficult to detect. Maxine :0)

Here's a couple of pictures; I have this; ......my husband bought this for me several years ago. I love Irish Jewelry. I stick with Gold----mostly 14K, but 10K is good too. I know a lot of 10K is sold in Ireland. A jeweler I went to told me this anyway...... It seems a lot of us do have Irish blood, or ENGLISH. Take Care, Maxine :0)

This is a horrible feeling, and I have had this happen a lot. It would make my cry when I was younger------before I knew anything about POTs. I'm on 20mgs of propranolol 3 times a day. When I crashed with my POTS I had tachycardia even on my full dose of propranolol. Now this was scary-----I assumed the beta blocker wouldn't let this happen. I assumed wrong. I still struggle from time to time with tachycardia on my beta blocker, but hopefully this will never happen again when I first get out of bed. That is the worst feeling. How can this be.......here we are, fully rested and our heart races after sleeping? Messes with the mind............. Maxine :0)

Check out my post! It's pretty shameful that doctors can't admit there's obvious instability because they're afraid of opening up a can of worms. Once they admit what they have been missing for years, it could make them look bad. However, I think patients have more respect for doctors who admit they have missed something, rather then continually tell them they're nuts. I'm sick of it! It's pretty important to be taken seriously about such a SERIOUS PROBLEM! Get your ACT together medical community! You're in the dark ages...................... Maxine :0)

I'm sorry you weren't able to go to the parade this year! I hope that your episode passes quickly, and that you're able to enjoy the parade in person the next time. I want to visit Ireland someday if I can ever get over my fear of flying. That would be a long boat trip--- Both sides of my family are mostly Irish, other then some Swiss on my Dad's Father's side of the family. I was really in the St. Patrick's day spirit yesterday, and put on my Irish Celtic jewelry, and an Irish clover pin my Aunt had for years, and passed down to me. We had a parade in our city, and of course lots of partying. I wish I could join in on the fun too, and I totally understand your situation. I'm having some setbacks myself, and wish I could enjoy some of the functions around town. I went on line yesterday looking at more irish jewelry, and I found one site that had beautiful things. It's very difficult to find! We have an Irish store near by at the mall, and the man working there has promised to find the Irish love knot dangle earrings for me, and has never called us back every time we asked about it. We gave up on him, and moved on. I had an irish love knot pendent on one of the gold chains my mother gave me, and I decided to try out our new shredder one day--------------hmmm..........the chain was longer, about 22 in., and well........it was pulled into the shredder. It's a good shredder, I know that now! lol It chewed the love knot entirely up. We ordered it from an Irish store on the Eastern shore of Maryland that we saw when we went there for my son's wedding. I found this site: http://www.seawear.com/ I'm hoping to feel better next year so I can enjoy St. Patrick's day to the fullest! Take Care, Maxine :0)

I had an appt. scheduled with the surgeon yesterday. He looked at the 3-D CTs from the hospital that took them. The surgeon was able to see that I had instability of 7.9mm on the right, and 7.5 on the left, but the films were not as clear as he would like. He gave them specific instructions on what to do, but of course they didn't follow what he wanted. He wasn't surprised about the films being this way, and said this has happened quite a lot with films from other locations. He wants me to come back to Cincinnati to have the 3D CT taken there. He said the CT techs didn't even do 3D in the right areas, or it might even be 2D. I asked about the vertebral artery on the left missing in the brain, but not in my neck, and asked if the instability could affect this. He said yes it can, and said the vertebral artery blood supply is likely cut of in the c1-c2 area, and explained how the anatomy is with the vertebral artery in this area. I asked about the right vertebral artery being overloaded because it's compensating for the left vertebral artery. I told him it's enlarged already, and I said I was worried because the vascular tone with my EDS is poor, and the right vertebral artery could rupture. I already have headaches now on the right side, and it travels down the right side of my neck. When I have the headaches get very irritable, weak, and if I turn my head too quickly my balance is thrown off. He said I need surgery. I asked him about the on going issue on why radiologists can't see this instability when it even looked obvious to me. He showed my husband and I the difference on the CT scan. He showed us the measurements. I asked what normal was when the head is turned to the left and right. He said it should NOT be more then 1mm. I noticed that I have to be careful when I wear my hard collar, as if I put in on too tight I'll get a headache on the right side of my head. I can't put any pressure on this area. It's difficult because I need some stability with my cervical collar, but if it's too tight then I end up with a pounding headache. I noticed this wearing it on the way home from Cincinnati yesterday. I almost passed out when I got up, but noticed when I released the collar it got better, but not the headache. I took a while for that to get better. As I said previously, when I turn my head to the right I get the throbbing head pain. It depends on the day, but there's times when it scares the heck out of me when it gets really bad, and I can't move my head at all. Anyway, I have to go back again to have another CT done, but Husband has to see when he can get the time off. He has time off in May for vacation, and we are planning on going back then, so he can save family leave if surgery is done. I'm hoping to delay surgery until after the EDNF conference in July. We signed up, and made hotel reservations already. I asked the Doctor/surgeon to send a note to my PCP because I need to follow up on those lesions found on my liver. They said most likely hepatic cysts, but due to family cancer history genetic testing has been done for lynch syndrome, but I don't have the results on that yet. Docs here don't want to do a colonoscopy, so I'm going to Cleveland Clinc. I need the documentation of instability in my records. I'm thinking the Cleveland Clinic still won't take it seriously, but when I have sedation I need to have the instability documented due to the breathing problems I have. Intubation could be dangerous if the anesthesiologist isn't aware of the instability. The University of Mich. did take it seriously at first when I went there for the tooth extraction. However, when they read the notes of an older NSG who I saw there in 2005, they changed their opinion after the NSG said I didn't have instability. The oral surgeon was rough, but he did have me wear my collar. His lack of concern for my CCI caused my symptoms to worsen after the tooth extraction. I'm really tired of dealing with this mistreatment from the different physicians I have seen. My POTS has taken a serious dump lately, and now I have near syncope when I'm sitting. It's not very often I get that, but definately worse then I have been in a long time when trying to get out, or standing for any length of time. Walking any distance is almost impossible. I can make it down one wing of the mall, and maybe browse a couple of small stores. Not only do I have the CCI, but I have the rest of my symptoms to deal with, and because of the treatment I have had on the CCI issues, the rest of my health issues have suffered also. Sorry to make this long, but I am very upset about the CCI not being taken seriously, and I'm concerned if I had an emergency I'd be out of luck. I also have the disc. dessiccation on thoracic spine, and this has caused a lot of pain and problems also. All of this is really upsetting, and it's been really rough on me----AND my husband. Maxine :0)

It does sound like a lot of people here have this related to their POTS, but I often wonder if their POTS is secondary to another neurological disorder. I had this happen when I was driving once. It was in the evening, and I probably had already pushed myself too far that day. It felt like tunnel vision, and I had a terrible time trying to get myself home. I was getting so overwhelmed by it, and I called my husband on the cell phone. He said my speech was slurring also. I never did find out what this could have been from, but I assume blood flow to my brain wasn't great, and this was the cause. Now that I know I have poor vascular tone from the EDS this makes sense. Maxine :0)

I would call now if you want to see him when you get into the US. If you're here for a year, you would see him before you leave to back to the UK. don't settle for an appt. with the NP, you need to see Dr. Grubb. I'm sorry you're going through this, it really brings you down emotionally too when the crash comes. Today we went to the mall, and I'm a bit bummed. I'll feel OK, so I say let's go, then BANG------it's doesn't take much. Pacing yourself is important........very much so. I hope they are able to get you back to a better place with your symptoms. Take Care, Maxine :0)

Thankful, I appreciate your kindness and support. I had further testing on the large diverticuli in small intestine in late 2007/early 2008, and it was indeed the diverticuli that has been there since my 20s. I have had two flairs of diverticulitis----one in 1987 that was very bad and caused a fever, and the other in 2005 which caused my white count to go up to 16,000. I do know this divertculi has been there a long, long time. The liver lesions is what scares me the most right now, and the fact that I have not had a colonoscopy. The barium enema didn't show anything major that I know of in regards to possible tumors. Here's the results; IMPRESSION: 1. DISTENSION IS SOMEWHAT LESS THEN OPTIMAL AS THE ILIOCECAL VALVE WAS NOT COMPETANT AND MUCH AIR LEAKED BACK INTO THE SMALL BOWEL. 2. NUMEROUS DIVERTICULA ARE SEEN, PARTICULARLY IN THE DESCENDING AND SIGMOID AREAS WITH SCATTERED DIVERTICULA IN THE TRANSVERSE REGIONS. NO CONSTRICTINGOR OBSTRUCTING LESIONS ARE SEEN. 3. THERE ARE MULTIPLE SMALL FILLING DEFECTS SEEN WHICH MAY BE RELATED TO RETAINED STOOL AND SOME OF THESE COULD BE RELATED TO AIR FILLED DIVERTICULA OVERLYING THE COLON, BUT SMALL POLYPOID LESIONS ARE NOT TOTALLY EXCLUDED ON THE BASIS OF THIS STUDY. I have a call into my brother's oncologist to see if blood work for lynch syndrome is in yet, and I called the general surgeon that I have seen for her opinion on the lesions. It's not good that I have excessive diverticula, only sparing the ascending colon. This is way too much for someone my age. I'm bloated 95% of the time, and rarely have a day with comfortable guts. However, I don't notice severe pain, just discomfort, mild cramping, and major bloating. I also become full very easily. You would think this would help me lose weight----NOT. However, I haven't gained anything since last summer, but haven't lost. Now I will be............I'm want my thin self back. I'll figure out a way with this crazy messed up body. I had an endocrinology appointment yesterday, and HE was REALLY nice and very caring. My thyroid junk was put on the back burner, and I haven't seen him for 4 years. He's definately understanding about my EDS, POTS, Spine Issues, ect. I couldn't believe how much, and I almost wanted to pinch myself to see if this could be true. He's doing the hormone testing my gynochologist wouldn't doo---or think necessary. BIG clue; missing periods, hot flashes, and stagnant weight. I'm not huge, but about 20 pounds heavier then I should be, but I'd like to be 30 pound lighter. He wasn't focused to much on weight, but more so on my thyroid as it's shrinking and slowing being killed off by my immune system from the autoimmune hashemotos. I still think the wellbutrin has caused the weight gain----if only I could stop taking it. If I miss a dose, I'm bed bound for the most part. Blood vessels dialate enough now, off the wellbutrin they barely constrict at all. Quite a mess I am, and praying to be less of a mess when the docs can figure out how to help me. Maxine :0)

Thanks Julie, I appreciate the support from all of you! It's the right scan, and it's the same hospital that reported the CT scan of my cervical spine as "normal". And many years of tests from some of the most advanced hospitals proove this area is a mess. When the radiologist from this same hospital read an MRA of my brain arterial structure as "exquisite", I later found out from NIH that thw whole left vertebral artery in my brain is missing. I asked the neurologist from this SAME hospital why is was read as "normal", when this left vertebral artery is missing? she said she wanted to see the film and compare it to the one from NIH. I looked at both disks in my computer, and I could clearly see it's missing! she ended up calleing me and saying, "yup, your right, the left vertebral artery IS missing". I asked her why the radiologist said is was "normal"----"exquisite", and she replied that he was 70 years old, and he wasn't very good. OK THEN, DOES HE MISS TUMORS, ANERYSMS, AND OTHER SERIOUS THINGS! I'm not saying this missing artery is the end of the world, but Dr. McDOnnell from the NIH EDS study said it's important to watch this, as high swings in BP could cause a stroke! I don't have the compensation of the left vertebral artery. I'm calling the oncologist who's doing the genetic testing on me for lynch syndrome http://ghr.nlm.nih.gov/condition=lynchsyndrome . I'm going to tell him about the liver lesions/cysts. I want to have any cancers ruled out in my digestive system. My digestive system is always miserable, and I'm bloated 95% of the time. It's gotten worse in the last couple of years. I'm sick up feeling full after a few bites of food. Tuesday I see and orthopedic surgeon to have his view of the CT and MRI. He has alreday said I have cervical cranial instability (CCI). I know this might seem trivial compared to the other things I have going on, but now I have another molar bothering me on the upper left. This molar is crowned, but there's a slight gap which exposes the tooth under it. It's starting to bother me, but the dentist insures me it's OK. It just drive me nutty sine I have already lost 3 of them. It's so embarrassing, and I'm very self conscience about it. It's the EDS caugin problems with my teeth. My dental hygene is excellant---I'm OCD about it, and have all kinds of tools to keep my teeth in great shpe, but it still doesn't work out. I can't imagine getting another tooth pulled----especially upper----not with my neck instability! The place I went to have my other molar pulled last year was very dismissive. At first they weren't, but they read an old report from a neurosurgeon who didn't think I had CCI, and my treatment from there went down hill. the oral surgeon who oulled the tooth was rough, and insensitive. He had to split the tooth into pieces to get it out. I can't handle another dental problem on top of everything else. Maxine :0)

Thanks Poohbear! I'm sure they'll do liver function tests, but as far as I know they have been in the normal range for years. The bilirubin was slightly elevated when I first got sick with POTs, but has since been stable. I saw my endocrinologist today, and he understands my worry. I told him that the radiologist said it was probably hepatic cysts, and that would be fine as I know they're benign lesions. I can deal with that. It's just too scary since my brother's cancer spread to his liver, and that''s what took him from us. It was so sad to see him that way when the toxins got to his brain because the liver could no longer process them. He went from being himself one day, and the next day he didn't know where he was, or who he was. The only problem is that I know the radiologist is wrong about the spine aspect of my MRI. THere's no way it could be normal, as I have too many other tests, and opinions from doctors that say I have multiple herniated discs, congenital stenosis, pannus growth on odontoid bone, ect. ect. So it's stunning that this radiologist couldn't see any of that. It's plain crazy! Another radiologist from the same hospital said that my artery anatomy was exquisite! Heck, he missed a whole vertebral artery that was missing on the left side of my brain. Who do you miss that! NIH wondered the same ting when they reported it as missing. I'm so sick of the insane ignorance---------------It's plain stupid! Maxine :0)

My brother's cancer spread to his liver, and that is ultimately what took his life. His liver shut down, and all the toxins spilled until his system causing organ failure. His cancer started in his colon. My mother, brother, and uncle died in the span of two years. Her brother died just two weeks after she did. This is some scary *****. Maxine :0)

I read that hepatic cysts are benign and nothing to worry about----I just hope the radiologist is right on this, because he's wrong on the rest of the thoracic MRI! I have had a desiccated disk on t-8-9 for a while now, and NIH also verified it as well, and also said my whole thoracic spine is deteriorating. I know herniated discs were showing on MRIs dating back to 2002, 2003, 2004, 2005, 2007---------------------so I'm not sure what this dude knows about reading films. Maybe he's specifically looking for instability only, since this is specified on the order. With EDS, it will probably never be seen on MRIs or any other test that doesn't show us in motion. However, all my other tests show other abnormalities that can result from an unstable spine-----i.e.----->pannus growth on odontoid boney covering in the c1-2 area. I called my PCP to find out if I should have more followup with this due to the family history of cancer. My mother had a cyst for many years, and since they didn't find the masssive amount of cancer in her abdominal cavity until 48 hours before she died----we have no idea where her cancer started. Maxine :0)

Thank you--- I'm scared of the fact that it showed as one cyst before on CT scans, and now it's showing as multiple cysts. Maxine :0)

This is scary stuff with my family history of cancer----------I MEAN SCARY! Here's the big giant kicker-----------my last 3-D CT of cervical spine and cranial area is "normal" according to radiologist. Today I found out the thoracic MRI was "normal" other then several hyper intense lesions on liver. This is NUTS because many other previous tests show lots of herniated discs up and down entire spine, broad based disc bulge on c-1 and 2, congenital cervical spine stenosis, congenitally small posterior fossa (lower skull), and partially blocked cerebral spinal fluid! I hear the base of my skull humming when I lie down constantly, I still have the bulging edema on the right side of my neck near clavicle, and I still have the unexplained mastoid fluid that's been there for 5 years----but no sign of ear infection to bring this on-----so where is the fluid from? You all know my mother died of cancer in 2007, my brother died last year from colon cancer, my mother's brother died two weeks after she died of colon cancer, her sister died of brain cancer in 2003. In late 2006 I had a scare when they said wall thickening in duodeum, 3rd and 4th portion, and a large divertiucli of 5cm. The radiologist said he couldn't rule out neoplasm, but it was most likely a diverticulitis flare, or imflammatory bowel disease. Then my lung x-ray said mild interstitial nodularity. LET ME TELL YOU, my mother had so many tests done, and all with different little findings, but only possible neoplasms mentioned, with more follow up testing. This went on for several years, then when she got really sick, she suffered from HUGE blood clots running the entire length of her leg, and suffered small TIAs------she was losing her mind. This went on for three months. Just before this they found a small tumor in her bladder that they said was contained, and she didn't have to worry about cancer anywhere else. 48 hours before she died they found her whole abdomen, liver, bladder, and lungs were full of cancer. This is so scary I can't begin to tell you. I can barely think straight. My right side has always bothered me with dull pain, but more so in the last year. I have attributed it to the diverticuli in small bowel. Feels like a baby fist jammed up in there. Not horribly painful, but uncomfortable, and I get full easily when I eat. My double contrast lower barium enema in Early 2008 showed diverticuli in every portion of large bowel, only sparing the ascending colon. They couldn't rule out polypoid polyps, but thought it could be retained stool. I feel doomed. Maxine :0) I'm not in very good spirits right now.

Angela, sorry I'm reading this late, and I'm replying late. I hope things continue to improve for your mother, and her quality of life is better. It sound like a rough couple of weeks for you dealing with a virus on top of all that. Take care of yourself the best you can. Sending you a HUG! Maxine :0)

Willows------------I'm sorry this happened! I hope you heal quickly! BIG HUGS Maxine :0)

I'm so sorry dream02------this is too big for me to have any answers for you. ------My heart goes out to you. I found this link----I don't know if this would be of any help, but I felt I needed to try and help in some way. http://www.dhhs.state.nc.us/aging/housing2.htm There's has to be something for people who are in your position. I'm sorry your son has health problems as well, this has not been fair to both of you. My prayers go out to both of you. BIG HUG