Seizure/Tremors/Episode?

Had a busy lovely weekend. My very first babyshower for a grandchild which is a girl. So excited. Then Sunday was my 59th birthday, did nothing sat in pjs all day, but it was also the one year anniversary of our home fire that took away every piece of anything we ever owned away. But I still have everything as my lovely oldest daughter remindes me and she is so wise and right.
But even resting yesterday for which I knew was a wise thing to do after friday and sat. I had a weird thing happen tonight after supper. Such the title of this post.

I was cleaning  up after dinner when I had an episode of unknown orgian. I have had a few other such or simiarl before but not for about a year. I went to reach to pick up something and all of a sudden my arms, chest, head, felt like tremors only on the inside, or like my arms weighed 100 pounds each,  or no control over them no visable tremors but on the inside. I got scared which is not like me I sat on the stool by me as it got worst, and thought I would have to call 911 I am always afraid it has something to do with my heart, but as I sat there it started to subside. Now hours later my arms still hurt and feel heavy, along with my hands, my eyes feel funny. One way to describe how my arms and hands feel it to say it feels like I have just got done writing out cards for the past 8 hours and my muscles feel tight and heavy. I am on anti-siezure meds actually for the neuropathy, but I do feel my doctor also feels  it helps these so called (epsiodes). So one more thing to be added to the doctor must talk to list.
So what causes this? I was researching tonight, and yes can be perherial neuropathy, seizures, from the H.E. from the myositis the UCTD? who knows but I know I have to get some answers.

Leg Issues

Well today I wanted to test the walking pain I had at the pulmonolgist at home, I wanted to walk for six mins and see if it happen again or was it a freak incident for me. So put my tennis on and started to walk around my home without stopping, by four mins my thighs ached and felt like I might not make it, not quite as bad as it was at the doctors office, but it was there. I did make the six mins, and think I could have gone longer with pain and weakness next time I will do it and see when I have to stop. I think it was a little better today because of the shoe thing, I wore a good pair of shoes to the doctor that day but not tennis, they had a heal of some sort so I think that could have made the difference of a few mins. But there is diffently something going on, a progression of sorts of my muscle disease. Which scares the hell out of me. With a progessive muscle disease you never know when to push it or not too. You do not want to permantly lose more muscle by pushing it too much, but then you have to exercise and keep moving to keep what you do have. It is a real balancing act.

As I said in my last post, I more than likely did not notice it because I have not done anything, just around the house were I stop and start, sit, do something, sit. So how would I know. Well I did call my neuro and I am going in next week for a complete blood work up. I know they are looking for Cpk levels but they do not always show on me, when things are bad so we will see.

I Feel Like I Am Getting A Flare

I am afraid I am having a flare for the past few days my legs have been so bad, week burn, but today I had an appointment with my pulmonolgist who did pulmonary function tests, for which one included me taking a walk with a nurse around the clinic with and oxygen meter on my finger for six mins. Well my oxygen was find, thank goodness but my legs were so weak and burning after four mins I did not think I would be able to finish the walk, for two more mins. It was almost scary. I know when I shop sometimes the only way I can do it is with a cart to lean on, I can not walk through malls, but this was the worst I can ever remember. My arms are feeling very weak also. I will give it a few days to see if things lighten up a bit, or get worst. If they do not get better I will call the neurologist or the rhuematolgist, not sure who. It maybe from them lowering my imuran before Christmas, I really hope it is not from swimming for which I have really enjoyed doing for exercise and so far it has not bothered me, so I hope not I need to exercise also.

The good news today though was I was stable, nothing has gotten worst, and I do not need a cat scan (I normally do every six months) so this is great and do not have to go back for six months. It is good to get some good news and this is great.

Well that is it for tonight, see you all later/

Doctors Call

Well got a call from the pain mangement clinic to see how I was doing with my steriod shots in my spine and tailbone. I had to tell her it was a disapointment this time, with no difference felt. I do not believe she wanted to believe this as she kept on asking me if there was any difference. But there is not so what can one say but the truth.

They always ask what the pain scale is right now, I do not like this either, when you live with chronic pain it is hard to put a number on it. I believe if I had to think about this that my back is constant 2or a 3, but then if I do to much or move the wrong way it is 5 or 6 and can go even higher depending.
So how does one answer this question when asked. Same as my leg muscles, arms, feet, fingers, what do I say when I have to put a number to them. They hurt all the time, never does not. So lets see today my knees are a 3 (only when I use them) My fingers and hands are around a 2 but will get worst when I am done typing. My thighs ache I think they are like a 4 but if I do not sit down they will become an 8. I think one gets my drift. I realize they have this pain scale for a reason. It helps them better understand how one hurts. But when you are dealing with someone with chronic pain I think it should be different. My 2 is more than likely someone who does not have pain everyday all day long is a 5 or 6.

Well enough complaining. The Hashimoto's Encephalpathy is making me afraid I am having some old symptoms again. I feel like I can not comprehend what others are saying, brain is not processing the information right. Even with TV I sit right on top of the dang thing, turn it up and can hear but it is not all making sense to me. I hate this. I had this a lot before I was dx the first time. People would talk to me and it would be bla, bla,bla to me. So this is scarey. I do have hearing aids so I do have a problem with my hearing, but that is not it, it is a comprehension, with my brain or a focus issue. Not sure. I will have to watch my next appt is not until April, so will have to see what the next few weeks bring. I do not want more IV infusions, I think I will reguest the plasma exchange for which I have read about. It seems to have put a few  people into remissions.

Well good bye till next time.

Hashimoto's Encepalopathy

I just wanted to remind my fellow H.E. suffers that have come upound my blog, that I am putting together a book with another with patient stories of how we were diagnoised, symptoms, treatments and how we are doing now. We really would like your story. It is said there are only around two hundred known cases of H.E. world wide, we have approx fifty stories for our book so far. Caregivers are welcome and encouraged to write their stories along with love ones of the  H.E. Patient. So please give some thought to this we will be starting our publishing soon but would love to add your story.

Headaches

Headaches that never go away. never, they hang on all day every day. I use to think it was allergies, or sinus problems but now I know that most of them are from the Hashimoto's Encephalopathy. My brain will feel swollen, like there is too much pressure in my skull. Sometimes I have to just close my eyes and sit in a dark room lights from the tv or computer screen are too much. Or there maybe a sharp jolt of electricity type pain shooting in my skull, brief but alarming just the same. I asked in my facebook group of friends with the same disease for which there is forty of us in one place (total of patients dx with HE is supposedly around 200) in the world, so we represent a good percentage of patients in one spot the majority of them have the everyday headaches also. So I know I am not alone, but still sometimes it does get bad, and does affect what I can or can not do. It has become the norm to just always have one and just keep moving because if you sit down it feels worst because I am thinking of it. Or I will get a numbness in the back of my head, it feels like it fell asleep and will be like that for days, which is unnerving also.

Another thing I  have asked in  my H.E. group is the seizures. I wanted to know how many of us out of the forty have had them and if they were after other symptoms showed up or was that the first thing to happen. Were they the typical type or not typical. I find it interesting that many of us had non typical seizure's after we were having alot of symptoms a while before we were dx. A few had full blown seizures that helped with the dx of the disease. A few of us were in comas,. and hospitalized sometime during the H.E. diagnoses. Only one of us out of the forty have been in a remission without a flare for over six years. How wonderful for her. She had over thirty treatments of plasma exchange. She still has the residue H.E. problems that seem to hang on to all. Short term memory problems, fatigue, concentration problems, balance issues to name a few. Most of us do not work, can not work. With speech issues, memory, concentration, balance issues, fatigue, would you hire us?

Another thing I have taken interest in with our group is that we all seem to have had  type A personalty's. This I find is interesting too. Maybe only one or two say they were not. I know for myself this is the hardest part to accept. Not being able to be that A personality anymore. No more Susie homemaker that is for sure.

Well enough for now, the head is pounding.