Guest guest Posted February 2, 2004 Report Share Posted February 2, 2004 Alison, my problems started in the brain, in 1987 I started dropping things all over the place. I could barely stand up without falling and was having these horrible headaches that were there when I woke up and there when I went to bed. The doctors didn't really take me seriously until I started having real sight problems, it seems unless they can actually put their hands on something that they can see like a scan or an eye chart or something they stay as confused as we do, I wonder what is wrong with their brain. Anyway to make a long story short all it would have taken to get things started was a simple CT scan which showed by brain to be three times larger than it was supposed to be wow you think that can cause a headache, da. They then placed a shunt but this didn't solve all my problems as they were treating symptoms not totally the probably which finally came out to be aqueductal stenosis/hydrocephalus/neurosarcoidosis and the weakness which was causing problems standing and functioning properly was I had a stroke. We know our bodies pretty well so don't ever let a doctor dismiss you about that something is wrong when you know there is. My thoughts will be with you as you begin your journey to get diagnosed and treatment. I am still having to go through lots of procedures to take care of the disease but at least I am on a better path than I was years ago. As far as your medical records go, I would keep every copy you can get because as it was said by the other email its only human hands which are typing these charts and unfortunately we do make mistakes. I am sorry that your doctors can't seem to get their stuff together to make sure you get the right treatment, please don't let them put things off until it can cause real problems, I did because they put me of at first and I have permanent damage to my right side. Take care. Your friend in Texas, Jeanna -- Re: UK Calling!! Alison, I've heard it said before that you should always ask for copies of all tests, reports and doctor visits. Sometimes we can catch things that others have missed and it never hurts to have copies for all the different doctors we see anyway. It is a hassle though, isn't it.... There is always the risk of oversight because there are people typing up these files and they DO make mistakes...as irritating as it is. I think if they know you're always asking for copies ...it may keep them more on their toes. Just my thought anyway. I doubt if it was any misunderstanding on your part...that is their common pat answer to cover for all their mistakes. Some people also take tape recorders to record the doctor's visit... I'm sorry that you are having to go through all this. I don't have too many answers for you because I haven't been diagnosed with it in the brain. It might help to find someone...a family member or friend who can help and support you at your actual docto'rs visits. My prayers are with you, Alison, during this stressful time. love and hugs S.Alison Procter wrote: Hello everyone!!Sorry I haven't been around for a while....I am still here, still waiting for the LP, and another MRI.I have seen my GP since I last posted here, and it looks like I had numerous lesions on my brain before, and not just the 1 I was told I had!A slight mix up there, or a misunderstanding on my part, I am told!!Yeah right!!I believe the lesions are within my core, and not the mengies (sp), so now the people in 'white coats', are thinking this could be more of an MS thing, but they haven't told me this...so it says in a letter from my consultant to my GP!! (He showed me the letter !)Does this make any sense?Do the lesions have to be in the core for one illness, or vice a versa?thanks for any info..Love to allAliosn x~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2004 Report Share Posted February 16, 2004 Hi Jeanna... Thanks.. you are soo kind!! I just want to cry today...I am feeling VERY sorry for myself, then i feel VERY guilty, as I know there are people wrose off than me!!! I will be glad to get this next scan over with, then my next appointment to see the Consultant should hopefully reveal some answers!! I know it definately isn't active sarcoid, I was told that on Friday afteroon, just before leaving the hospital.... Take care, and thanks again Love Alison x > Alison, I tried to write to your address but I couldn't get it to go through, but basically I just wanted to let you know that I have been there and done that. I was first diagnosed with hydrocephalus which totally showed up on a cat scan that it took the doctor's basically a year to order and by that time my brain was 3 1/2 times larger than it was supposed to be so I was shunted that was in 1987, then in 1991 it was replaced and I also had developed chronic aseptic meningitis and I had the numbness/pain and so forth, I had been falling all over the place,my vision was basically like looking through water all the time, my right side was extremely weaker than my right making my balance even worse than it had been and all unknown etiology that is when I was first bounced from MS to NS and I was first started on high dose steroids as we couldn't let anything happen to the shunt, and lo and behold I developed cataracts and avascular necrosis in my right hip, so the doctors knew they had to find another way to suppress my immune system so I was started on Methotrexate and have been taking it ever since and the neuro people say I will have to take it till I go see Jesus because it is the only thing which keeps the protein down enough my shunts work and this is 6 at least shunts after the first two later. Now I am developing the new and more defined symptoms which are lovely my eyes think cars are coming towards me when I drive you add this to the clouded vision you already have and now you have a dangerous machine out there without the car or medicine combined so I am not driving until they can figure out if this is a lesion of MS causing the eye thing and I need to be on newer medicine or if we need to up the Methotrexate which I am now on 10mg one week and 20 the next. I will shut up for now because I know you need to rest, but I do know how it feels most definitely. Take care and my thoughts will be with you always. Your friend in Texas, Jeanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2004 Report Share Posted February 16, 2004 Alison, I understand the pull between grieving (ok, even whining) about our own losses, while recognizing that others have suffered worse. The past week every time I found myself complaining about my legs hurting, I thought " Well, at least I have legs to hurt " because a friend from church had a double above-the-knee amputation last week. But a very wise person, who wrote " Desiderata, " said " Do not compare yourself to others, for there will always be others greater or lesser than yourself. " Likewise, there will always be others healthier or sicker than yourself, but people also have different strengths, support systems, resources to cope, etc. Tracie could see this better than I, but it's okay to grieve our losses, without trying to discount them because of someone else's. Does this make sense? Hugs from Ramblin' Rose Re: Alison > Hi Jeanna... > > Thanks.. you are soo kind!! > > I just want to cry today...I am feeling VERY sorry for myself, then > i feel VERY guilty, as I know there are people wrose off than me!!! > > I will be glad to get this next scan over with, then my next > appointment to see the Consultant should hopefully reveal some > answers!! > > I know it definately isn't active sarcoid, I was told that on Friday > afteroon, just before leaving the hospital.... > > Take care, and thanks again > > Love Alison x > > > > > Alison, I tried to write to your address but I couldn't get it to > go through, but basically I just wanted to let you know that I have > been there and done that. I was first diagnosed with hydrocephalus > which totally showed up on a cat scan that it took the doctor's > basically a year to order and by that time my brain was 3 1/2 times > larger than it was supposed to be so I was shunted that was in 1987, > then in 1991 it was replaced and I also had developed chronic > aseptic meningitis and I had the numbness/pain and so forth, I had > been falling all over the place,my vision was basically like looking > through water all the time, my right side was extremely weaker than > my right making my balance even worse than it had been and all > unknown etiology that is when I was first bounced from MS to NS and > I was first started on high dose steroids as we couldn't let > anything happen to the shunt, and lo and behold I developed > cataracts and avascular necrosis in my right hip, so the doctors > knew they had to find another way to suppress my immune system so I > was started on Methotrexate and have been taking it ever since and > the neuro people say I will have to take it till I go see Jesus > because it is the only thing which keeps the protein down enough my > shunts work and this is 6 at least shunts after the first two > later. Now I am developing the new and more defined symptoms which > are lovely my eyes think cars are coming towards me when I drive you > add this to the clouded vision you already have and now you have a > dangerous machine out there without the car or medicine combined so > I am not driving until they can figure out if this is a lesion of MS > causing the eye thing and I need to be on newer medicine or if we > need to up the Methotrexate which I am now on 10mg one week and 20 > the next. I will shut up for now because I know you need to rest, > but I do know how it feels most definitely. Take care and my > thoughts will be with you always. Your friend in Texas, Jeanna > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > Live Group Chat:- > Mondays & Fridays 10pm EST USA > http://www.elderwyn.com/neurosarcoidosis/chat.php > > Message Archives:- > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > Members Database:- > Listings of locations, phone numbers, and instant messengers. > http://groups.yahoo.com/group/Neurosarcoidosis/database > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2004 Report Share Posted February 16, 2004 Rose, As I read this note to Alison, I see the Nurse coming out in you. That is the way I think every day. I just found out that my Aunt who has dealt with a terrible autoimmune disease for 30 years, now has lymphoma and is on chemo. I am praying that the chemo knocks out the cancer and puts her disease in remission. I have a young friend, under 30 with two little kids, who was just dx with MS. My sister in laws husband just left her for a younger girl after 25 years of marriage. and I think wow I am truly blessed. But like Rose, that does not mean we don't hurt and we shouldn't share this with others, or vent when we need to. It is the Nurse in us, who even when we can't physically take care of patients anymore, we still mentally take care of them, so I know exactly what you are saying Rose, but it is important to grieve our losses, and take time to talk about us. When I'm having a bad day, and someone asks how I am, I use to say, oh fine! Now I say well it's a bad day, but hopefully it will pass. Rose, you and I will forever in our hearts be nurses first! Love and God Bless to all, I keep you all in my prayers daily, Marla Re: Alison > > > > Hi Jeanna... > > > > Thanks.. you are soo kind!! > > > > I just want to cry today...I am feeling VERY sorry for myself, then > > i feel VERY guilty, as I know there are people wrose off than me!!! > > > > I will be glad to get this next scan over with, then my next > > appointment to see the Consultant should hopefully reveal some > > answers!! > > > > I know it definately isn't active sarcoid, I was told that on Friday > > afteroon, just before leaving the hospital.... > > > > Take care, and thanks again > > > > Love Alison x > > > > > > > > > Alison, I tried to write to your address but I couldn't get it to > > go through, but basically I just wanted to let you know that I have > > been there and done that. I was first diagnosed with hydrocephalus > > which totally showed up on a cat scan that it took the doctor's > > basically a year to order and by that time my brain was 3 1/2 times > > larger than it was supposed to be so I was shunted that was in 1987, > > then in 1991 it was replaced and I also had developed chronic > > aseptic meningitis and I had the numbness/pain and so forth, I had > > been falling all over the place,my vision was basically like looking > > through water all the time, my right side was extremely weaker than > > my right making my balance even worse than it had been and all > > unknown etiology that is when I was first bounced from MS to NS and > > I was first started on high dose steroids as we couldn't let > > anything happen to the shunt, and lo and behold I developed > > cataracts and avascular necrosis in my right hip, so the doctors > > knew they had to find another way to suppress my immune system so I > > was started on Methotrexate and have been taking it ever since and > > the neuro people say I will have to take it till I go see Jesus > > because it is the only thing which keeps the protein down enough my > > shunts work and this is 6 at least shunts after the first two > > later. Now I am developing the new and more defined symptoms which > > are lovely my eyes think cars are coming towards me when I drive you > > add this to the clouded vision you already have and now you have a > > dangerous machine out there without the car or medicine combined so > > I am not driving until they can figure out if this is a lesion of MS > > causing the eye thing and I need to be on newer medicine or if we > > need to up the Methotrexate which I am now on 10mg one week and 20 > > the next. I will shut up for now because I know you need to rest, > > but I do know how it feels most definitely. Take care and my > > thoughts will be with you always. Your friend in Texas, Jeanna > > > > > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > The Neurosarcoidosis Community > > > > Live Group Chat:- > > Mondays & Fridays 10pm EST USA > > http://www.elderwyn.com/neurosarcoidosis/chat.php > > > > Message Archives:- > > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > > > Members Database:- > > Listings of locations, phone numbers, and instant messengers. > > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > > Quote Link to comment Share on other sites More sharing options...
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