Got a diagnoses! Kind of long! But I have to vent some!
AnonymousNovember 8, 2008 at 10:53 pm
We made it to Duke but was a nightmare traveling. The traffic was bad. Got there an hour early and they took me in! They have a team of Neurologist looking at me. 6 different Neuro’s and all agreed the same thing. Ohh my god theEMG/NCV they did on me was rough. I wanted to get in here yesterday but could not move. Every single muscle in my body hurt! 3 Neuro’s ended up doing my EMG/NCV and discussing it with each other. They started with the electrical shocks and I had no problems with until the machine uped to the highest level! LOL! Then it felt like a rubber band or towel being popped on my legs. I have had several of these test and have never had one that took 4hours doing and got stuck with needles everywhere! Ouch Ouch! 😀 One neuro was rough with the needles. Kept wiggling that sucker around pushing down hard and it hurt while other areas did not! Normally these EMG’s I have had were an hour tops. 4 HOURS! 😡 After they got the last muscle, I told them no more torture!
Then I was taken for a spinal! That got done and I had to lay flat a few hours. I was there 9 hours. Could not believe they took the time they did but am grateful! I must say that Duke Medical Center is top notch! Very glad I went there. They teams looking at my labs and records and MRI”s. The nerve damage I have is rare. Only a few get this with Lupus. But it does happen to a few that have Lupus. Diagnosed with Systemic Lupus CIDP/Small Vessel Vasculitis/Muscular Damage Myositis! All consistant with Systemic Lupus.The last Neurologist I saw didn’t see it in the MRI. They found 2 white matter lessions on brain stem. Very tiny but indicative that Lupus attacked my Nervous System in May causing all nerves body damage. Almost mimicing Multipe Sclerosis! Could have died! Told me that the damage has settled down and is no longer active damage has been done! Small Vessel Vasculitis/Myositis still active. Thyroid did not cause problem but aggitated Lupus and with the thyroid symptoms because of cancer.They are positive CIDP was not caused by Thyroid. Records from 16 years ago also show same pattern. We now know it’s Lupus! Surgery on spine triggered Lupus flare on nervous system. Since this has happened 3 times involving vaccine,nerve biopsy and spine surgery. Have to let the doctors know any surgical procedures I have, must have high doses of pulse steroids. Kept on them tapering down. Meaning I have to be healed up before taken off. Considered high risk! Treatment plan! Since Pitt Trauma Center in Greenville is closer than Duke. Sending me to see Professor of Neurology and Rheumatology in Greenville. Rheumatologist does alot of research on Lupus and because I am considered rare they want me seeing that Rheumatologist. Neurologist at Duke one of the best on East Coast. Dr. Jules Vern, Professor of Neurology. Sending me to 2 very good doctors at Pitt that do research on Lupus. Have me scheduled for next Thursday to see Rheumy there. Then Dec. 3rd I see Neuro. Have placed me on 50mgs Prednisone and plan to have the Rhumatologist put me on chemo drug. They are considering IVIG Rituximab. Has anybody tried this drug before? Curious of what to expect? You know what makes me mad? I told the very first doctor when I moved back to NC that I had CNS Lupus. Needed to be watched on a constant basis. That one doctor ended up telling me I no longer had lupus and my lupus was gone. Because one stupid lab came out normal! When I lived up North, I was getting labs done every six weeks and one would be normal while the other one would be abnormal. That one doctor placed it in my records that I did not have Lupus to all these other doctors that were seeing me in my town. Blowing me off as if I was faking my illness until I ended up having this attack. Then they wanted me to see Duke! If they would have listened to me, which only one doctor has and I thank him so much for trying his best to treat me while getting into Duke. I could have died! So I am a little salty at a few doctors right now. The damage that could have been treated months and months ago and I might have gotten better has now progressed to a mess right now. Now I need IVIG Chemo and Prednisone along with no telling what! All because of 1 doctor! I had my Lupus controlled3 years ago with medications. That one doctor took me off all lupus meds and called it Fibromyalgia. I asked the Neuro about my B-12 and Vitamin D Malabsortion problem now causing me to take RX’s Injections and 50000IU’s of Vitamin D. Well anyway because my stomach kept staying upset because of Lupus.. I now have Diverticulitis and two vitamins that are not absorbing in my stomach and that too has been caused by lupus. Systemic Lupus causes organ damage and because I wasn’t treated for almost 3 years. It has now caused organ damage. My GFR Lab is even showing abnormal labs indicating CKF. Lupus has been attacking my kidneys! No telling what else!
I am just grateful that Duke spent this kind of time with me and have finally given me a diagnoses and I now know that it’s Lupus and not anything else. When I left the Neuro’s Office at Duke, I left in tears! Very mixed emotions. I was crying because they finally gave me an answer but sad at the same time because the damage has been done and that damage on my nerves in my body can’t be healed back. It’s permanant! The Chemo and Prednisone is to take away the inflammation of the blood vessels and treat the myositis and to try and suppress the Lupus back into remission. I might get better and I might not. Just depends on what my body wants to do here! But at least I now have an answer as to what is going on and I have to focus on treating myself and pray that I do get somewhat better. Some people have mild cases of Lupus while others don’t! I am one that have had battles with it and those in here that have Lupus will kind of know what it is like having. It’s a nasty disease and there is no cure! Just treatment in hopes to cause remission. I saw remission for 3 years and it felt great. But the disease is back and it’s working full time now and I may have a long haul ahead of me. I’m going to fight this disease in any way I can! And I’m NOT GOING TO LET THIS DISEASE TAKE ME DOWN! But thanks to Duke, they have … I’m crying now! God! Why did I have to start crying! I’m being a big baby right now! I’m mad because I got neglected by doctors here in my own town. The very first doctor I saw and he was a total jerk. And because of him, I now want to move out this little dumpy town and the only reason I moved back here was because my grandmother died and while at her funeral my father took sick and died 7 weeks later. So I got basically stuck here! My mother can’t drive and gets sick alot and that year my father died, my mom right after he died ..she got sick and landed in the hospital and I have been taking care of her ever since. I gave up 3 fantastic doctors up North because my father begged me to help my mom! And I promised him on his death bed that I would help her. Hard part! My mom refused to move up North with me. And I had to force myself to move here! I have two sisters. One lives about 3 hours away and has a child that Autistic. Bad case of Autism. She can’t care for my mom. My other sister has a job where she travels the world and has custody of her daughters children. Two of the children stay with me and Andy alot because my sister has nobody to lean on. They are good kids and don’t give me any problems when we keep them. One likes to be my nurse and the other one likes to be my doctor. LOL! They are cute and fun to be around. But I just hate this town! Everything in it! Everywhere me and my husband go, I see my father. And loosing him just about killed my soul. But if my mother passes before me. I will leaving this town so fast it’s no joke. Enough babbling here! I’m just grateful Duke was finally able to help me some and get answers. My heart is touched with them. 5 months I sat here and suffered and no answers. But had two years with a back injury and that too was a joke. Telling the first Orthopedic something was wrong and he kept telling me soft tissue injury. And here I was with 3 bad disk pressing into the spinal cord! I know my body more then these doctors do! And when something’s wrong, somethings wrong! Don’t tell me soft tissue injury and not run any test. I switched doctors and he did CT Mylegram and I had Spinal Stenosis of 3 disk! What’s wrong with the doctor’s in my town? I don’t get it! Next time I am in the ER in my town which I hope to never see again but I know I will because my mother is having surgery there soon. I’m taking photo’s so you can see this lousy hospital and the lousy staff they have! It’s so funny! I have seen several hospitals in several areas and they are professional but this hospital in the town I live in is a nightmare! It’s a freaking nightmare! I have never seen anything like it! Maybe I should write a book! A horror story. My brother in law was in that hospital and few months back and had major surgery. He had a pick line and one of the staff went into the room and jerked his table out and it snatched his pick line out. He almost bleed to death. They had to give him 4 units of blood and put him in ICU. Then another patient across the hall a housekeeper went into his room and he was one some kind of life support. I don’t know what the machine was but she pulled a plug and and his son went into the room and the next thing I see is them trying to revive the man. Then when my mom was in there they had to do a cath on her and the white girl saw a black doctor and I was standing there in shock when she started shaking her boobs saying Get Down Get Down! LOL! You should have seen the look on my moms face! You don’t even want to know what they did to me last week! Like I said I can’t wait to move out of this town.
AnonymousNovember 8, 2008 at 11:45 pm
Well, I’m going to tell you what they did to me last week. Last Saturday I got bad off and was having terrible abdominal pain. So Andy took me to the ER there. Got there around 10 at night and we sat there until 4 that morning. I was in so much pain it was no joke. Three security guards were sitting there with there feet propped up on the desk playing games on the computer. I went outside to the truck and decided to go ahead and take my meds. But all I took was an Ibuprophen for pain. Two black guys started following me to my truck. I unlocked the door and jump in quickly and locked the door. Our truck was right in front on the window where the guards could see. They not once looked out that window. One got on one side of the truck and the other one was right beside my window. I leaned down and told the you know what that I had a gun and blow his you know what’s head off! You don’t even want to know the language I used! So they backed off away from the window and stood behind my truck. I slid over to the drivers side and cranked the truck and pulled it into the first row. Waited for a car to pull in and then got out. Got inside and freaked out on the guards. Told them what happened and then they send out security. 5 minutes later they are back to playing games again. 4 in the morning I get a room. The nurse comes in and telld me I am next to be seen. I laid there from 4 to 7 and never got seen. All they did was take a urine specimin. I told Andy to open the door. And 3rd shift for 3 hours sat there and joked, cut up and talked about what they were going to do the next few days off. They were eating. laughing and telling jokes. 1st shift comes in. Now I am totally exhausted. Doctor comes in and orders a chest Xray and Abdomin Xray and they draw blood. The urine showed a UTI so they came in and gave me an IV drip with morphine. 5 minutes later they come in and give me Pepcid in the IV. Then she makes me drink a cocktail to stop nausea and heartburn. Then my white blood count was very high so they gave me an IV drip antibiotic. Then more morphine. I started feeling sick and at the same time they discharged me and told me I also had Larpharangyl Pheumonia but was mild. Gave me RX’s and I am getting sick. They put me in a wheelchair to take me to the truck. Andy is getting the truck. They give me a pink bucket. Here the nurse see’s me getting sick and doesn’t do a thing. I am puking my brains out and he not once took me back into the ER room. Andy takes me home. For 3 days I had nose bleed and was coughing up blood. I had to stay home and laid around all last week praying to get better. I had a reaction to that anti-biotic and it made me very sick.
This nurse is seeing me sick and does nothing. Didn’t go get the doctor or say a word. What is up with that? I told Duke what happened and they were shocked. Told me that it sounded like I busted a blood vessel in my lung and asked me how I was feeling now. Boy they checked me out!
I have called and complained to the hospital supervisors about this place and so have others and nothing ever gets done. This hospital is filthy! It’s really not sanitary either. I can’t wait to take pictures. And show you what I am talking about.
What suggestions could you give me to help me expose this place. It really needs to be exposed. Who could I call or go to in order to get this place investigated and shut down. I have seen alot of hospitals and everyone I have seen has had at least some professionalism. And it was kept clean. I have seen some fantastic places and average. And a few poor hospitals. But they were even professional and clean. They were understaffed. That I can understand. This place is well staffed but certainly has major problems. I mean major! I had my children in that hospital 29 years ago up to 24 years ago. At that time, that hospital was clean, the staff was great. Doctors were fantastic. And it was professional until 6 years ago! When my mother was in there, I saw problems. And everytime a family member is admitted or friend there is always a problem. What can I do to help this town get a better place of healthcare? Like I said! I’m takin photo’s soon when my mom has her surgery. And I do plan on getting the worst pictures I can get! If I got to live here in this town, then I want to have decent healthcare! If you saw this place, I think you would agree with me!
AnonymousNovember 9, 2008 at 2:04 am
Linda you sure have been through hell and back. I am pleased that the neuro’s at Duke have been so thorough and seem to have gotten to the core of the problems you have been having. But you have been in jeopardy many times due to ineptness of some of the medical personnel that you have dealt with.
I would suggest that you just keep good notes of things that have occurred with dates and times. Then when you are back on your feet (and have calmed down some if that is possible with all of the omissons and incompetency) then write letters to the appropriate people. You want to site facts only and not put in what you think of what went on–just tell your story as objectively as possible and state what the doctors at Duke found and tell how ill you have been.
You can always put your draft letters here and we could help edit and offer suggestions as sometimes when you are in the middle of a nightmare it is hard to see straight. Anway I am very glad that you have some answers, and vent all you like. I’ve had my moments of great rage with the medical system and I’m a retired RN and worked in the system for 30 years. Take care Linda.
AnonymousNovember 9, 2008 at 8:26 am
Linda, what horrible experiences you have been through. With all that you have gone through, you have been there for your family in there times of need. Pleased for you that Duke has given you answers.
I will have you in my prayers and will be praying that everything goes well with your moms surgery.
AnonymousNovember 9, 2008 at 4:41 pm
Linda, gosh, this horrible. Sorry you had to go through all this. You asked
[QUOTE]They are considering IVIG Rituximab. Has anybody tried this drug before? Curious of what to expect? [/QUOTE]
I’ve been getting this since last fall every six months. Normally it is given in 4 doses over 4 weeks. Because there have been no improvements, I am getting 8 doses this time, my 5th one scheduled for tomorrow morning at the Cancer Center. Reactions have been mild, just very minor flu like symptoms for a couple of days. There may be serious side effects in isolated cases. At this point it is only approved for Non-Hodgkins Lymphoma and RA. Trials for MS patients have been going on for some time. I’ve met a couple of those patients a year ago while getting IVIG in Denver.
Let me knOw if you want to know more.
AnonymousNovember 9, 2008 at 4:56 pm
I am sorry to hear how some of the last two weeks has gone for you and Andy. The Duke part sounded like they took good care of you. It sounds like Duke is the place to sort through highly complex situations like your. At least you have a firm answer instead of this back and forth blaming this and that.
Holy wow on that Mega EMG you got there. I am sure they did as much as necessary to ensure their diagnosis is accurate. OUCH!
Take it easy, rest and We hope you feel better soon.
AnonymousNovember 9, 2008 at 6:28 pm
Wow, Linda, you have been through a lot! It is a reminder that we have to be our own advocates because nobody else knows what we are feeling — kinda scary though, because I grew up thinking the doctor is always right! Sometimes they just don’t know. Glad to hear that you got a firm diagnosis — that should lead to an effective treatment plan. Hope you get to feeling better very soon! Hugs from Iowa…
AnonymousNovember 9, 2008 at 8:26 pm
Thanks family for the well wishes. I told my husband today that all I need to do now is drink a gallon of water and watch my pin holes leak! LOL! Got little bruises all over the place. That’s what I call one major extensive EMG/NCV! I have had many of these test over the years but NEVER had one like this one. Duke seems to be a good hospital. They do have a decent crew there and they work in teams. So you end up seeing the main doctor along with several underneath him. Tomorrow when I get the time, I am going to place a few pictures I took. It’s a nice place! Just hated that traffic! Thought about what I would do with these doctors I had problems with. Going to send them all a copy of Duke’s report! Then thank them so very much for having me in their care. 😀 Nice but sarcastic tone! Then tell them that maybe they should listen more often to their patients and when diagnosed with Lupus.. it never goes away. Might even suggest to the first doctor that saw me that he goes back to school and get a refresher course in Lupus. He was a Rheumatologist too! But a lousy one! Don’t get me wrong here! I have seen some great nurses and great doctors and those that are professional, I do not cut them down. But it’s just like any other profession! Some doctors and nurses go into the medical field because it is their dream to help people, while others just go in it for the money and don’t care about people. They just see dollar signs. Just like the good auto mechanic that is decent and honest.. then there is Joe the Mechanic that only see’s money and will tell you everything is wrong with your car when in fact it is just a minor thing but he will end up costing you a fortune ripping you off. The nurse and doctor are the same way! Some are fantastic and others stink! I can tell a good one from bad one! The good ones are like Jamie! She does what she does bacause she wants to help people out! It’s in her heart to do so! My regular doctor is that way too. He will go to all ends just to try and help his patients and he listens.
Thanks Norb about the information. I looked online and found they are using this also for Lupus. Something to do with the B-Cells. People with Lupus tend to make more B-Cells and this drug helps to deplete the B-Cells and has a good prognosis is helping many with lupus that have problems like me. But! It’s also a drug that in some patients it really does not help them. A few rare cases have not responded to the drug while others have. So I guess this will be a trial and error and see what happens with my case!
Just curious about what the cost of this treatment might run? I know it’s not going to be cheap! Thanks for all the helpful advice. Everyone in here have been so nice! This site is really great! I see alot of closeness here and understanding. Something that many sites don’t have!
Thank-you all to the bottom of my heart for being there for me and giving me answers and sharing with me. I have learned alot in here but still have alot to learn. I hope that someday I too will be able to help another person in here and give them advice that will make them better! Hugs
AnonymousNovember 9, 2008 at 9:30 pm
Geez Linda, you have been thru the wringer! Good idea on sending the report to those docs that didn’t listen. They need to learn how to listen and know the harm they have caused. If you spring leaks from your pin holes, make sure your hub takes that picture so you can post it! LOL You are a wonder woman, I don’t know how you made it thru 4 hours of EMG/NCV 😮 I was a real sissy on the first one and made him stop after the 3rd zap. They talked me into a second try and I made it thru the whole test prob no more than 1/2hour but holy hanna that hurt! You are amazing. AND you are already helping people! Just posting your ups and downs lets me know I’m not alone and showing your courage gives me omph to keep trying. Wishing you the best!
AnonymousNovember 10, 2008 at 3:28 pm
I know you are relieved to finally have answers. My father sees the Neurologists at Duke. He had GBS in 1993 and was treated At Pitt Memorial. His case was relatively mild but for years his mobility regressed and neither his MD at home nor his Neurologist in Greenville would seriously listen to his concerns. We asked for a referral to Duke and the neurologist there immediately hospitalized him and ran every test immaginable. He was diagnosed with Normal Pressure Hydrocephaly and MS- we weren’t happy that this is what is going on, but we were so relieved that, at least, we finally had answers. It is a bittersweet feeling to finally know for sure what is really going on.
When my son became ill with an aggressise GBS case in January- we insisted he be transferred to Duke. I credit them with the best care possible. He was there in the PICU for 5 1/2 weeks before transferring to Greeenville for the Regional Rehab facilty for 10 weeks. His OT and PT there were very good as well.
I can’t say enough positve things about Duke. We are still following up with the neurologists there. My son just had a repeat nerve conduction test in September and described it pretty much like you have. Not a pleasant experience!
Dr. Joel Morganlander is the neurologist my son and my father see at Duke
AnonymousNovember 10, 2008 at 6:06 pm
here is the last claim for one day as shown by Medicare. It includes Rituxan, medical supplies, procedures etc.
I am receiving the standard amount for NHL which is 375mg/squaremeter body surface. You can find a calculator on the net.
[QUOTE]Amount Charged: $7,733.00 (Rituxan = $6,930)
Medicare Approved: $5,118.49 [/QUOTE]
AnonymousNovember 11, 2008 at 12:56 pm
Thank-you all for the kind words and advice. Norb! Wow! That stuff is not cheap! I had a feeling it was going to cost pretty high. Thank-god I have health insurance and a supplement to go along with it. Hopefully I won’t have to much of a heaping bill.
I’m so sick of seeing doctors! 🙁 Yesterday I have to see the Opthamologist. Saw her right when they diagnosed me and did my surgery and she ordered two test yesterday on my eyes. What else can go wrong with me? Geeesh! I’m beginning to get afraid of waking up now and finding my fingers gone! LOL! This has been a year for me that I hope I never ever see again!
My left eye changed drastically on her last visit and because of the thyoid issue I had to get checked out. Well they took pictures of my eyes yesterday and my left eye has a spot on it! She wants to see me in 6 months and redo this test to see if the spot was superficial.. meaning nothing or if there is more changes going on with that eye!
I came home and decided not to even look it up! 🙁 I don’t even want to know until she tells me! The less I worry about the better off I will be so I am just going to forget about and not even think about it until my next appointment.
Gosh Norb! That medication is high. I’m not sure what dose they are going to start me out with or what to expect just yet but that too, I am not even going to worry about! LOL!
All I got to say is I hope 2009 will be a much better year for me and I see myself getting well! No more looking up scary diseases and researching! LOL!
AnonymousNovember 13, 2008 at 7:41 pm
Kimbo, I see Morgenlander as well. He is genuinely good. I just never know if he will have a beard on or not. This last time, I grew a beard just to see what he would say !!
Linda, Linda, Linda…..
I am so glad you got a diagnosis,
I am sorry you had to do the long EMG. Mine was at Duke, I went in at 1:30 and was done by 5. And yes, they have that funny way of digging that needle in deep, and then pressing it to get a “Good” connection. HAH !
The ordeal at the hospital was horrible. I have also seen a hospital turn the same corner (downward spiral). I think it happens from management. They get someone in there who doesn’t know how to run things, and then they lose Doctor’s and then they lose pprestige and then they lose insurance carriers, and then they lose money, and then they close. It is sad, especially the care that patients receive in between.
Take care friend
AnonymousDecember 9, 2008 at 12:33 am
My goodness girl I do believe you have been hit. They may be related to our FORMER NEURO. Although my husband wasn’t mistreated physically he still lost alot of time, 10 months to be exact and with no cure and no treatment(except a liver transplant) we are about to find out just how much organ damage he may have.
sounds all to similar and so unjust to have someone not do their job correctly especially when you are dealing with an uncurable disease.
I do relate and feel for what you have gone thru. Remember when I wrote a long one and you said it is ok to vent . I am saying the same for you now. Let it all out .It is so unbelievable but we both know it happens. I also am still very salty one one particular doctor. I do not know how or what you can do and i have thought about this alot and am being very careful about saying his name as I do not want to get sued for slamming him but I feel he needs something to stop him from robbing people blind by keeping them with treatments for the money when he knew all along that the disease was in the family. I have two children and 5 small grandchildren who have a 50% chance of getting this awful disease and it hurst so bad.And my husband well I tried my best for him to get that 2nd opinion. Guys please try not to be somekind of hero thinking you are weak by getting other opinions. Maybe not all of you but seems like most of you are stubborn and it does not hurt to seek better opinions.
Our neuro was recently asked by the nurse of our family doc to send the sural biopsy to Mayo and he argued with his girl on the phone about it and refused. The nurse said he was totally out of place as she could hear everything going on until they put her on hold. THAT SHOULD NEVER HAVE HAPPENED EVER.I am not done with him and I will get that biopsy sent. He never wanted to send it to Cleveland Clinic bus I insisted and I will get it if I have to go there myself or call Univ of Tn for it and report him.
Any comments guys?
Sorry Linda for getting in my two cents but I do feel you are justified but I do not know what you can do about it.Maybe some of you will say forget it and move on but my husband may die because of the time lost. As you know if there is too much damage they will not even consider him for a liver transplant. And Linda you do have reason to feel you have lost time. Please take care . I hate to reinforce this for you but you have every right to let them know this is not right (both that Doctor and the filthy hospital)
God bless you my dear Linda
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