Tired Of Waiting: Blood Tests Then Wait, Wait, Wait

So those of you that have read the last few posts know that I have been waiting to see my new neurologist, this happened this past Tuesday March, 18, 2014. I told her my concerns, my trembling inside and out, shaking the jerking getting worst, my symptoms getting worst since the Imuran has been discontinued. I also told her and showed her my symptoms matching the MG list and said I have never done this before but this describes me to a T. Perfect description to what I experience with my muscle weakness and pain. So she agreed to do blood work for the MG, which is  MG test and a anti-musk blood test also. For the He symptoms she had me get again the thyroid antibodies tests, including the tpo anti-thyroid-peroxidase antibodies and the thyroglobulin antibodies and the cpk test for muscle inflammation. The poor girl at the clinic drawing blood had never done any of these. She kept on saying she was so sorry for taking so long, and I kept reassuring her it was find. So my thoughts are on these tests, is that I have only been off Imuran for two weeks, after being on it for four years how is this going to come out with an accurate result. We will see.

I am looking into finding a neuromuscular Md as many are telling me to do so. My muscle issues is nothing to screw around with. All the neuros I have seen have not been specializing in muscle part of the neurology. I also know I need a special kind of emg for diagnosing MG. One where they repeatedly zap the same muscle which makes sense, since that is what happens to mine, they tire out, run out of energy. So that is why I am looking, found one in Madison, and one in Milwaukee at Froedardt. So with Bob and I not driving distances again I would have to depend on others I hate that

Then as I was leaving my appointment with the new neuro appointment, she did say to me that she wanted me to see someone else from now on, in two months, the other will trade off with me to another neuro in the same clinic. I am not sure I like this set up. So another concern to me. I do not feel she felt she was able to help me, I was over her head.

I also told her I want IVIG and Dr. Santillan had recommended that for me next and she said we will wait to see the blood results. I am not happy about that either as I wanted to get this all started, find out if I would qualify for it or not,. I told her the rheumatologist  though I was on it all ready wants me off of the Imuran, she said why, we have had people on it for years. So I hate going to new doctors I just hate it. With the autoimmune problems that I have I do not need someone to screw with me. So now I wait, again for the blood work for which I am sure will be negative because of the autoimmune suppressants I have been on. .

I have noticed that I am losing my voice again, being hoarse as it was a few years ago before the Imuran was working, my swallowing is becoming an issue again too. So I guess the Imuran was working.

I have my first appointment made for the lip biopsy, I really do not get why I have to have an appointment first before they do it, just do it right. I know what it is. So that will be another wait too.

Oh well wait, wait, wait, Not that I am so busy, but I hate waiting.

Well will keep this updated.

The Clouds Were Covering my Sunshine Today, My Cup had a hole in it, The Roses lost their Smell

In fact the day stunk. I am always Susie Sunshine, always a smile on my face, a laugh, my cup is half full, but I tell you I woke up today with that dam sun under the clouds. First of all my arms and shoulders hurt like hell, now whether it is from the small fiber neuropathy, or the HE, or the myositis or what ever they hurt and are weak down into my hands. Some days it is ok I just work through it all but today, for some reason is different. I am tired, not been sleeping so well, then you start to think, thank goodness for Kindle who takes up some of that wakeful time in bed looking at the ceiling.

Things are piling up, I don't know why? (sarcastic) two handful of autoimmune diseases in a two year span, husband almost died and was in the hospital for liver, kidney problems, while I was headed to Chicago's Northwestern teaching hospital for a second opinion. Stress, stress, my mom was sick with dementia I felt guilty like I could never do enough for her, I was working full time while trying to pay a SBA loan back on a business I owned and closed (road construction). My neurologist told me to quit my job or I could die, I was dx with HE (had never heard of it) went for five days of out patient steroids, blew up like a balloon. Yippie, then two months later our old Victorian home burned to the ground in the middle of the night. Yes we got out we were saved along with our lab. So thank full but we lost everything we have ever owned in forty years of  marriage.  So cup is still have full, we are alive right. Insurance is screwing us still no settlement and it has been two years. My husband started to drink for which he had been recovered for a few years. And now they think I have sjrogens disease, and I am believing I have MG. We will see next week when I go in for my appointment. In between all of this mess I was dx with one rare autoimmune disease after another. Then of course add the small fiber neuropathy on top of all of this mess and dam it I hurt. I am sick of being sweet Susie, happy go lucky, my cup is half full, the sun is always shining. I am tired, tired, tired. Tired of my lazy butt sitting in a chair because I hurt, or my brain is frying and I am confused and need a brake. I have no motivation. Maybe I need sun and spring. But what ever it is, This is not me, not my personality. I am no depressed (cant be I am on meds for this) lol, but no I am just mad, sick of it, need a break, pissed, I know when I wake up tomorrow it will be better, but for today I do not know who I am any more, or where I live (still in a rental unit) I don't know where all my saved sentimental items are that disappeared in the fire, I don't know where my mom is who died three weeks after our fire. I miss her so much dementia and all. Today I just want to be pissed.

Another Delay

Another delay. I was just ready to leave for my Neurologist appointment Thurs and I got a phone call telling me they canceled it, the doctor was not going to be in that afternoon. I was glad they caught me as I live an hour a way and was just going to leave. But I was already, notes, questions, and everything ready to go. So now I have to wait another week and a half to get answers to my questions. Another week and a half longer to get the IVIG treatment. The worst part about it is that without the Imuran I can feel symptoms creeping up. Friday night and Saturday we had company and both times I could not talk, had to sit and think for almost every word that needed to come out of my mouth so hard to have a conversation with people. Thank God they were people that are really good friends. But it makes me so tired to try to talk when your brain is not working right. Plus it is still scary when it happens,. even though it has been since 2011 that I was dx with Hashimoto's Encephalopathy, it is still scary. So hopefully the IVIG will help me.

Well Friday it was such a beautiful day here it was in the 30s and I finally got to get outside and take down Christmas decorations, yes, really, lol Christmas decorations. I could not look at the red velvet bows one more day lol. But it has been way below zero here for months. So this was it the big day the day over 30. I did get half down, of what I had up so happy. I find this is such a weird thing  for me to be so happy that I did something so simple. I use to do that before anyone was up in the morning and now I feel like I deserve an award that I was able to do it. Lol. But when I went to haul them down the basement stairs, I fell, oh yes I did and  hit my head against a nice cement rocky wall. So of course I have had a nagging head ach too. One from my normal HE headache, and one from the rocky wall. I have to say since all my illnesses I fall a lot I do have to be more aware of what I am doing, or down I go, Or I for sure will tip if not fall, and this time lucky me, my husband was behind me so I got lectured for the rest of the night to be careful. I reminded him that he falls too, and he does  not have ten autoimmune diseases plus sfn to blame. What could he say.
Well time for bed, I will return.
Nighty, nite.

IVIg Here I Come Ready or Not (Watch out Hashimoto's Encephalopathy)

I had my rheumatologist appointment today, that went well, butttttt the rheumy wants me to have a lip biopsy to check for sjogrens disease (another autoimmune disease) I have thought I have had this for quite a few years. It made sense to me the dryness of the eyes throat, skin, but when he heard my small fiber neuropathy dx was positive he said it makes sense that I also have sjogrens. He said it does cause pain spread through out the body also. So I have to go off the Imuran for one month before the biopsy so that the biopsy does not come up with a false negative because of the meds.
Also same thing goes with IVIG. He said he would dx without the biopsy some people choice not to have it done because they will be treated the same with their other autoimmune diseases, but I said I want to know. It is good to have it documented if I do have it as it can be something that runs in families. So now the appointment Thurs with the new neurologist. I hope it goes well and I feel as comfortable with her as I did Dr. Santillan. I also hope now that things are pretty set that I do get approved by the insurance for the treatment plan as it is very, very expensive. I am sure it will take a month or so to work with the insurance with this to get it approved so it should work out ok, lip biopsy then the IVIg treatments start. cross fingers

I am also going to ask for a test for MG as I have had such termers that it is scary. Last night they started mid afternoon, lasted until today and it is ten at night and still have them a little in my arms. But last night they were inside my body and out, trying to eat, my right hand was trembling so bad, my fork was moving up and down and I could not stop it. This has been on my mind for a while as another who has HE has this also, and has been after me to be tested for this. As my symptoms were just like hers. So we will see what the neuro has to say tomorrow.

Hashimoto's Encephalopathy and Me

Yup that is right and me. It is a part of me, it does not own me. I am still the person I use to be, just a little slower. My brain does not always function the first time around when someone is trying to talk to me, or when I am typing this. But at least I have one, right? lol. But there are days I feel like the Scare crow on Wizard of OZ if I only had a brain,. (do a little dance) but I would problaly fall if I tried to do the dance, oh well. HE. Is hell. Sunday I drove sixty miles more than I have driven in three years. But felt like I was having a good day not too much pain, brain felt ok. So away I went with my hubby who would have taken over if I had a problem. But when I got home my brain started to play tricks on me. My hearing for which is not the best anyway, was going in and out. Like someone had a volume control in my brain, turning sound up and down. I must have driven my husband nuts with the volume on the changer for the tv but it was bad. Then the headaches started, still have them today and it is Tuesday and that was Sunday. Feeling blurry eyed, can not see good. So maybe the driving so far was not a good idea? Who knows right?

So tomorrow is the rheumatologists appointment, then thurs is the new neurologist appointment. So excited (NOT). I have to give the new neurologist a chance as I know she will be good and I wanted to stay in the same clinic as the old neurologist so I would not have to endure all the testing again. (For what reason) but so many doctors like to do their own tests. Thursday we will discuss the IVIG that is suppose to be my next treatment. I want to know how much for how long, at home, hospital. Then see if insurance will pay for it. It scares me for their can be some very unpleasant side affects. But then again I want to stop the progression of the small fiber neuropathy so I can maybe become more active like I have always been. At least for a little while. They need to control my autoimmune diseases to be able to help slow up the sfn. Nothing can cure it,(like the autoimmune diseases I have) but hopefully keep it at bay for a little longer.

So I will let all know.

Please remember our book we wrote, Understanding Hashimoto's Encephalopathy available on Amazon or your larger book stores. This book is a wealth of information for anyone who is suffering from this disease or knows anyone suffering from this disease. Patients own stories of their journeys to diagnosis, and scientific articles and resources are the heart of the book.

Bless you all

Susie