Re: Lorrie Anne-this is for you...

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Lorrie Anne, May the roads always rise to meet you, may the wind always be at your back and may you exceed your greatest expectations. What you are going through is tough but will come to pass believe me. You are such a beacon of hope to many of us. My uevitis is much better thank God and the En has not been as agressive over the last few months. What I mean by this is that I get one or two almost every month compared to the many nodules which would appear almost every month. Nodules around my ankles - still painful with swollen

feet especially after work. Keep the faith and may the good Lord grant you healing. Love, FAITH Kõkõßaßy wrote: Hello,Well, I went to my Neurologist appointment today at 1:00 p.m. I really like this Dr. she is just awesome. I

had seen her back in 2001 for problems with my lower legs after this vascular disease had come out of remission for the second time.She was very nice, and very thorough. She asked a lot of questions and she took her time with everything. Gosh, why can't ALL Doctors be this way? We talked about why I had been sent there by this new Rheumatologist that I am seeing, who happens to be a new associate of my old Rheumatologist, the one that had seen me as his patient since 1992. I tried desperately last week to get my old Dr. back, but last Friday I got that dreadful call from the office supervisor advising me that my old Dr. thought I should "just stick it out with this new Dr. and give him a chance." Remember that? I should have never been "given" to this new Dr. to begin with. That office supervisor even admitted to me last week when we talked in private about

my situation that my old Dr. had "given some of his patients to this new Dr. to get him started." That is just NOT right in my opinion. Especially when he was the ONLY Dr. to treat me for this illness. At least HE got me into remission. Well, I can assure you, after the mistakes this new Dr. made on my medical summary from my 1st visit on January 30th and the mistake he made last week, I won't be giving him a chance in hell to ever see me again. After discussing my long and complicated medical history with the Neurologist, she asked me where I had the Nerve Conduction Studies done and how were they done? I told her it was done right there in the same building as my Dr. was. She said, "By a technician?" I said, "Yes."She sort of sighed and said that she "really frowned on these Rheumatologists putting these "technicians" in their clinics to do

these types of tests, because they aren't done properly and are often "misleading" thus a wrong diagnosis, etc." She also said, "these guys don't know what they're doing." Basically, he put these straps with leads on them around my feet/ankles/toes and my wrists/hands/fingers and he shocked the shit out of me with volts of electricity. He just held this little machine in his hand, then he hooks that machine into his PC and sends the data to this place in Massachusetts where someone else can interpret the test results. She then asked me if I would like her to re-do the Nerve Conduction Studies because she wanted to make sure that the diagnosis I had last week which was, "Moderate Lower Extremity Polyneuropthy" was correct. For those who aren't familiar with Neuropathy:"Neuropathy can effect almost any part of

the body and it is the term used by physicians to describe nerve damage. Causes of neuropathy are usually as a side effect of some prexisting disease or condition such as diabetes, shingles, or cancer and chemotherapy use. In cases of neuropathy, sensory as well as pain nerves can be effected. This means that the pain felt by neuropathy patients is unusual in that it will often be a burning sensation, or the feeling of having a "dead leg" from having your circulation cut off." Also, the reason I was sent to her was because the report said it could not interpret whether my Polyneuropathy was "Axonal" or "Demylinating." For those who don't know what these terms mean:Demyelinating means that there is a disintegration of the myelinsheath that surrounds the nerve. Kind of like insulation on an electric wire. When that sheath disintegrates, conduction of nerve impulses suffer. This type of thing occurs in

many different disease processes, for example, Multiple Sclerosis (M.S.) is one.Axonal means the nerve itself. The Axon is the body of the nerve. Basically, the test just determines or confirms that there is a conduction problem, but doesn't tell you where it lies or what the root cause is.Anyways, she was the Neurologist and I totally trust this woman, so I said, "by all means, yes, re-do the tests because I am tired of having to go from Dr. to Dr. and I just need to be treated for this Vascular Disease. Well, she starts attaching the leads and she is sitting there in front of a little computer screen, and she starts to tell me when she is going to start the "zaps." I am laying there trying not to flinch before it even happens, because I remember how painful it was last time. lol! She begins the "zaps" and of course I am holding onto both sides of

the table, trying not to scream out, "ouch" and then she goes and does it behind my knee's! This is a sensitive place people, let me tell you!!! I was brave though and just squeezed the crap out of the padding on the sides of the table. lol!So, I am trying to hang in there, and she does all these area's on my legs, feet, etc.. on both legs. She is measuring lengths and all kinds of stuff. Nothing like that tech had done in San last week. She told me that these results all look normal. There isn't any indication that I have the kind of Polyneuropathy (the nerve damage) that this dumbass new Rheumatologist told me I had. Now, I was really confused....She then told me she wanted to do the "other" type of Nerve Conduction Test. This one

is where they stick the needle in the muscle and then "zap" you. I was like "okay" I just want them to find out what is REALLY going on here, so I am willing to let them do whatever they have to at this point. I am just growing very weary and fast, I don't know how much more I can go on like this. I get through all of that, and again, she tells me it looks okay, normal, no indication of the type of Polyneuropathy the Dr. told me I had. Actually, that Dr. sort of scoffed at the test results when I was there on the 2/13/06. He just tossed those aside and acted like it was no big deal and kept saying "let me look at your leg, let me look at your leg" when I was trying to ask him questions about my test results! I thought, "how rude!" I am just trying to understand what is happening to me and

I need him to explain it to me.I told the Neurologist earlier on in our conversation when she was doing a lot of different reflex tests and stuff on me with all the tools they use, that I didn't think this was a "nerve" problem from the beginning, it definately feels like a circulation problem. I have been complaining about the loss of feeling, tingling, burning, "pins & needles" feelings, leg/calf pain and total numbness (at some points) for years now. From the knee's down my legs are always so cold, which she said today, "were very cold to the touch." I already knew that this Vascular Disease (Erythema Induratum) attacks the small to mid-sized blood vessels (in my case) and that it also affects the arteries. All the Pathology Reports also indicated this.Since this episode started 2 months ago, when I sit for a few hours in a chair, my feet and ankles swell up now. That's why a month ago, my Family Dr. had

put me on the Lasix and Potassium to try and control that, and then my body had a terrible reaction to all of that and I got huge welps all over my forehead and body and my blood pressure was 154/102. So, those (3) drugs had to be stopped immediately. At that time I was also very sick, remember? I couldn't talk for 5 days, so they also had me on Doxycycline for that. They had to put me on Ativan right away to stop the reaction (anaphylactic shock) I was having. We weren't sure at the time, but my Family Dr. thought I was really sick with "Cedar Fever" which is very bad here in South Texas during the Winter months, so that's why I was on the Doxycycline. Not to mention, I am on 17 other medications at this time as well. I am also asthmatic, so that wasn't a good thing to be sick with either.Remember when I said last week that the new Dr. just told me, "you need to go back to the Dermatologist (the one who did the biopsy) or see a

Neurologist?" He said, "I think all this is, is just a skin problem." That's when I knew he wasn't in this for the long haul and just wanted to pawn me off to another Dr. Yet, last Friday, when I got the call from his office supervisor and she told me that my old Rheumatologist just wanted me to "stick it out with him" I knew I was screwed because he told me he wasn't going to start me on any treatments and he didn't agree with the one's that his partner (my old Dr.) gave me in the past. This Neurologist tells me today, "I cannot understand why he hasn't started you on any treatments for this vascular disease?" I told her, "I know.. I don't understand it either, and neither did the Dermatologist or my Family Dr. So, she told me to get dressed and she would be right back. A few minutes later, she comes in and sits back down and she says to me, "I would like to refer you to the Mayo

Clinic." I just sat up and looked at her, and I just swallowed really hard. I said, "WHY??" Now, I am really scared and I am thinking she is going to tell me some more bad news. She said, "with your medical history, and this systemic type of vascular disease that you have, you need to be evaluated to see why all of this is happening to you, and so that they as a team can come to some type of treatment plan for you." She told me they had a clinic in Florida, Arizona and Minnesota. http://www.mayoclinic.org/We also talked about 's Hopkins too, but I don't know what all they do there.http://www.hopkinshospital.org/patients/index.html I told her that was weird that she would mention that because years ago after the first time this disease appeared, my Family Doctor had

mentioned to me that he wanted to send me to this place in Temple, Texas called & White. http://www.sw.org/At that time, I didn't have insurance and I couldn't afford to go through all of that so it never came to fruition, and we never talked about it again. I told her I really didn't want to have to go out of state for a week alone to a place that I have never been to before. I asked her if I could go to & White instead and she said, "Yes." I know the Mayo Clinic is a far better place, but healthwise, I just don't know if I can handle traveling out of state for all of this. These past 2 months have been hell for me emotionally and physically. I told her I would also need to check with the insurance to see how much of it they would pay and of course, I needed to talk to my family about this. I have a dog, 3 cats, and 2 birds that will need to be looked after and none of my family lives here. I also have a job that I have

to schedule this around. I just have to really plan for this. I would also like to do some research online about these places as well. Maybe call them and talk to them about how all of this works. The Neurologist told me that I will be there for about a week and there will be a team of Doctors that are all in the fields that cover all of my health problems and they will do non-stop testing to cover everything they can. They will then assess me as a team to see what is going on and how they can help me.I'm telling you guys, I just wanted to start crying right there, but I didn't. I just sucked it up. I hadn't even finished my paperwork that I took in there on the clipboard because they had called me back before I could get through it all. Plus, we had covered so much in the room. Thank God too, because when I was ready to go, I had to sit out front and finish it, otherwise I probably would have started bawling. So, I finished up the paperwork and before I left I asked the Dr. if she would do a phone consultation with my Family Dr. and she said, "of course I can." I just feel it would be better for him to talk to her about everything because he has been my Dr. since 1987 and he can tell her everything that has happened. He can't possibly get it all through just her Summary of my one visit. Bless my Family Doctors heart, like I said last week, he feels so badly for me. He wants to help me so much but this just isn't in his field. He always looks me straight in the eyes and says, "I'm sorry, there is just nothing I can do, you're very sick with so many things going on. All I can do is treat your symptoms and your pain." She had offered to also give me something for the leg pain, but I declined it. She had looked at the site where the nodule was biopsied and said, "Gosh, that doesn't look good at all."

I said, "I know, it's been like this since the day of the biopsy on 12/21/06." So anyways, this is getting too long. I am just overwhelmed right now. I have felt overwhelmed since this all started in December, it's just snowballing though and I just want it to STOP. I am starting to feel depressed about all of this again, and I just keep telling myself it will get better, it will get better..." I have really gotten good at hiding my feelings in these past few years I'm telling you. Living alone for the past 5 years hasn't helped either. I just work and come home, work and come home. That is my life. I live like a hermit. It sucks when you're so drained from work that when you get home you don't have the energy to enjoy life anymore. The diseases zap all of the strength out of me, the pain keeps me inside, the meds I

have to take make me sleepy and woozy. I mean, who can live like this? I sure can't.I called my parents, I spoke to my Mother about this. She said, "It doesn't matter how much this costs, we have money and we will take care of it, WE JUST WANT YOU WELL!" I told her I didn't want them to pay for anything like this because it costs thousandsssssssssssss of dollars to do something like this. She sorta barked at me for a few minutes, and I just let her. I was too stressed out to argue with her. I have no debts and I don't want to start incurring any either. So we'll see what the insurance says they will cover and go from there. I also was told by the Dr. today that I would need to get together A LOT of medical records. She said they want X-ray and MRI films, pathology reports, lab tests, all of it. I have all of my films here, and I do have quite a bit of my medical records going back at least 13 yrs. but I think they should also have all of

the Doctors notes and summaries as well. I have had to see SO many Doctors that trying to get all of these records is going to be a huge job in itself. Most Doctors don't keep records in their offices past 5 yrs. They are stored somewhere else. Ugh.. I have a lot to do. I will have to talk to my Dad tomorrow, I wasn't able to tonight.I am exhausted and it's 2:58 a.m. (CDT) here now. I just wanted to let you all know what is going on. If you don't hear from me, please don't worry, I am just trying to deal with all of this. I just need some time to research all of this, talk with my family, the Doctors, and these hospitals. I'm just not in a very talkative mood lately. I'm sorry....You guys have been so supportive of me, and I appreciate you more than you know. It's friends like you that have helped me to hold it together through all of this. You're the glue in my broken little world! God Bless & Goodnight,Hugs,Lorrie Anne Faith Is My Beacon Of Hope....

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