Got a diagnoses! Kind of long! But I have to vent some!

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 Told me that the damage has settled down and is no longer active damage has been done!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.