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[TMIC] Hemorrhoids
Hey everyone, I hope things are getting better for each and every one of you! When I was in the hospital, probably my 4th week, I developed Hemorrhoids. Not having much feeling in that area I guess it was inevitable. Well luckily they went away with some medication at the hospital. After several months of being home there back. Any magic relief meds that you know of. I sure would appreciate it. Mark Marlton ** Get a sneak peek of the all-new AOL at http://discover.aol.com/memed/aolcom30tour
[TMIC] Doctors!
I went to my Internist the other day for a non TM related issue. Since I had him cornered I asked him some questions about my TM. He has been seeing me for years and has been involved since my TM. I asked him about my urine retention problem. ( I have been cathing 4 times a day since my TM, Oct. 2006). He told me that usually someone who has been cathing for over 6 months usually does not get back to normal. Is this true? All that I have read and my visit to Johns Hopkins says two years is the target. Am I destined to cath now for the rest of my life? Should he have said that without knowing for sure? I try to think positively but when you doctor of many years tells you that your bladder will probably not come back it is difficult to keep a positive attitude. Thanks for letting me vent. Mark Marlton, NJ ** See what's free at http://www.aol.com.
Re: [TMIC] coincidence??
Since I was diagnosed with TM, October 07, three other people in my town have been diagnosed with TM. I never even heard of TM until my diagnosis. Four people in the last nine months in my area that I know of...coincidence? Mark Marlton, NJ ** See what's free at http://www.aol.com.
Re: [TMIC] Feet pain
Most of the time I walk IN shoes. I think the support helps with the balance and numb sensation in my feet. On another note I just returned from Johns Hopkins where I was given my third angiogram. Two at Temple Hospital in Phila and now the one at Johns Hopkins. Like Temple Hospital the Interventional Radiologist found absolutely nothing wrong from the angiogram. I asked Dr. Greenberg about the results. He told me that I either have TM or I had a vascular problem that healed. Either way we now have to deal with my symptoms. From what I understand, dealing with the symptoms only means physical therapy. There is a medication that he sort of recommends but I will not take it because of the side effects. Well, back to square one! ** See what's free at http://www.aol.com.
Re: [TMIC] Renal problems
I too started out with trouble urinating back in May of 2006. I too had an exam and was put on two courses of antibiotics. No change. Went to a Urologist and was scheduled for a Cyto. Prior to the appointment I had lower back pain which went down my legs and then I could not urinate at all. I went to Temple Hospital in Philadelphia and after 6 weeks was diagnosed with TMI believe only by process of elimination. In the hospital I had two angiograms because the doctors thought that I must have an AVM. Both angiograms did not show an AVM. I am going to Johns Hopkins on Thursday for another angiogram. Dr. Greenburg wants his people to take a look. I am not sure what to pray for. To find an AVM or not. As far as an angiogrram being painful, not much. Just pressure. The hard part for me was lying still for 6 hours after the test. I hope they can find something or give me something to help me urinate on my own. Cathing is such a pain and inconvenient! Wish me luck. Everyone, Take care, Mark Marlton, NJ ** See what's free at http://www.aol.com.
Re: [TMIC] Renal problems
Thanks Natalie. I wish the best for you. Hang in there and try and keep a positive outlook. I will let everyone know how my appointment goes. Hopefully I will be seeing the Neurologist after my angiogram. Will see By the way I live about 2 hours from Hopkins. Take care, Mark Marlton, NJ ** See what's free at http://www.aol.com.
Re: [TMIC] Reason for TM
Natalie, I was also never told the why or how I got TM. Really, I am not sure that I have TM. I'll explain. Back in Sept of 06 I had a little lower back pain. The next day the pain went down my right calf. The next day the pain was now in my lower back, right calf and now in the left calf. The next day I was hardly able to walk and I was unable to urinate on my own. I was then transported to my local hospital by ambulance and then the same night transferred to Temple University Hospital in Philadelphia. I was in the hospital for over 6 weeks taking steroids 4 times a day and being tested for everything from MS to West Nile. Do to the fact that my MRIs and my spinal tap did not conclusively show TM I was given two angiograms where the Interventional Radiologist was looking for a AVM. A leak in the spine which would cause the inflammation of my nerves causing my symptoms. None was found during either test. So therefore I have TM by process of elimination. I left the hospital in Nov of 06 and since had visited Johns Hopkins and met with Dr. Greenburg, Dr. Kerr's partner. I am scheduled for another angiogram at Hopkins to eliminate the possibility of an AVM. When I was diagnosed with TM at Temple Hospital I was told that it was idiopathic, no reason. When I left the hospital I had in home re-hab for about two weeks and then went to out patient re-hab for about a month. I am now continuing my re-hab at home with my own equipment by myself. I am stronger but not really much better. I am still numb from the waist down to my toes and the most uncomfortable areas are my feet especially my right foot. I hope Hopkins can determine if I really do have TM or an AVM. Thank you for allowing me to tell my story and vent a little. Mark Marlton, NJ ** See what's free at http://www.aol.com.
[TMIC] straight cath
Hello everyone, I have not logged in recently but I read as much as possible. But I do have a question that I hope someone out there has an answer...one I want to hear! But first let me recap I was first diagnosed with TM after being in Temple hospital for over 6 weeks back in Sept of 2006. I recently visited Johns Hopkins in MD and was told by Dr. Greenburg that he was not sure that I had TM. I might have an AVM. Arterial Vascular Malformation. Temple hospital thought that as well but could not prove it so they diagnosed me with TM. Dr. Greenburg wants to do another angiogram in June to see if Temple missed the AVM. I was told by Dr. Greenburg that there are two ways to determine TM. One is with an MRI and the other is from the fluid from a spinal tap. Both were done at Temple Hospital and both did not show TM. I am numb from the waist down to my toes and must straight cath at least 4 times a day. Now to my question. Has anyone had problems urinating and then had the bladder come back and was able to urinate on their own again? Lately I have been able to urinate a little on my own but it is psoriatic. Is this a good sign or just a fluke? Thanks for letting me vent. Mark Marlton, NJ ** See what's free at http://www.aol.com.
Re: [TMIC] New Address...please add to your address book
Not knowing is so frustrating although you don't want a worse diagnosis than you already have! Today I am going back to Temple Hospital in Philadelphia for a urodynamic(sp) test on my bladder. Has anyone ever had one? What should I expect? Mark Marlton, NJ ** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.
Re: [TMIC] Zap - sudden paralysis
My situation was similar. Had lower back pain on Sunday. Had pain in my right calf on Monday. Had pain in my left leg on Tuesday. Had terrible pain in my lower back and both legs on Wednesday. Woke up Thursday - could hardly walk and I could not urinate at all. Went into the hospital and did not come out for over 6 weeks. Was diagnosed (finally) with TM I believe by process of elimination. Had a consult at Johns Hopkins in Baltimore and now I am scheduled for another angiogram at Johns Hopkins because they are not convinced that I have TM. Maybe an AVM. Thank God I am able to drive (not long distances) and walk with a cane. Not much pain other than my feet. Very frustrated, Mark Marlton, NJ ** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.
Re: [TMIC] New Address...please add to your address book
Hello Everyone, I have not been on line for about a month. I am so sorry to hear the stories about the pain, numbness and other problems that many of you are having. Hang in there it has to get better!! Refresher: I was diagnosed with TM from the head of Neurology at Temple Hospital in Philadelphia at the end of Oct. 2006. I believe he felt it was TM through process of elimination. All of the doctors there at first felt it was an AVM. But after two angeograms the AVM was never found, therefore TM. PS: My MRI and spinal tap did not show TM!! On January 31st I had an appointment with Dr. Greenburg at Johns Hopkins in Baltimore. As of today I do not think he believes that I have TM. He too thinks I have an AVM and that the doctors at Temple missed something. Since Jan. 31st his team, Neurology, Radiology, Neuro-surgery, etc. are still reviewing my films and CDs. I was supposed to hear from Dr. Greenburg last week. Nothing yet. But I am being patient. My symptoms are still the numbness from the waist down to my toes. Paying special attention to my feet, thighs and butt. The worst is the inability to urinate on my own. I have not gone on my own since Sept. 21st when I entered the hospital for a 6 week stay. Now I am cathing 4-5 times a day. I am not in any pain other than the bottoms of my feet and my but when I sit on a hard surface too long. I work out in my basement at least five times a week. I am stronger but not better! I don't think my friends understand that. They see that I can walk now with a cane. Sometimes without the cane. (Short distances). They look at me and say I look great and it is hard for me to make them understand that I am numb from the waist down 24/7. And I am tired of explaining it! I hope Dr. Greenburg calls soon with some answers. Not knowing is difficult. Everyone take care and keep fighting!! Mark Marlton, New Jersey ** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.
