Hashimoto's Encephalopathy/ Autoimmune Encephalopathy

Autoimmune Encephalopathy/ Hashimoto's Encephalopathy the specialists are now debating the label once more. It seems to be so confusing to so many Even us who are studying the disease, it is so hard to explain it to someone else.

When I was dx I was told it was not a thyroid disease, but it was my  antibodies attacking the neurons in my brain that was causing all the issues.

The path keeps changing. But the good thing is we have more specialists interested in this rare syndrome/disease. This is very hopeful, yet we need so much more. The poor people who are suffering so bad with this rotten disease makes the hope for answers not quick enough.

I believe we will find out in the future that HE is under the umbrella of Autoimmune encephalopathy for which they will have to study the antibodies to find the cause and treatment of He.

Our new edition of Understanding Hashimoto's Encephalopathy is really coming along. I am so excited as all of us are who are working on this edition. With AE specialists being interviewed for the book, we are so hopeful to provide even more information then we did with the first book. We still have at its center/ the core of the book, Patients own stories. This is the book, reading these stories. We have so many compelling  stories in this book about personal endurance  and the heartfelt things that are involved with getting a dx.

The whole problem is that doctors do not know how to dx someone with HE. They are afraid to dx them I believe. It being rare makes it even more unusual to have someone say, that patient has HE. Then comes the treatment. This seems also to be a problem for people who's doctors are not familiar with the protocol of treatment once dx.

Here is to hoping the new book with help spread light on this problem for doctors and the patients.

Now as far as I am concern, the Ivig helps. Do I like it, no I hate it, not the sitting  there being hooked up, that is not it, it is the after affects of the treatment. The being out of commission for a week out of every month. I try to tell myself it is giving me three good weeks to give up one is not that bad, but when you have so much to do, and there is no quarantine that the treatment is going to work every month, so is it worth it? Not sure, now they are talking about putting in a port because it is getting  harder to stick me and start an IV for the infusion. I am not afraid of this, but I just hate the way it looks, am I vane, NO not at almost 62 years old, but it is just one more thing that would remind me every time I change my clothes, take a shower, look into the mirror  that I am a person who is ill. And who wants to be reminded of that? lol Not me I like to forget about it.

The book is one reason I have not been here for a few months, it is all consuming right now. Also it is so hard to complete a huge task like this when everyone working on our project has HE. We take our turns having flares, and sitting back for a while. We have to remind ourselves it is ok. When it is done, it is done. The first book was behind one year for the same reason. But hopefully fall of this year 2015 it will be published. I have to say I am so proud of all the hard work everyone has done to make this an educational one of a kind book on HE.

I am an Autoimmune Mess

I do not like my chronic illnesses to define who I am. It is not me. But there are days, when I think, I do not know what it is like  not to have pain, or not a problem swallowing, or maybe not a problem with balance, or breathing, or walking, bla, bla, bla. Complain, complain, complain. Not often do I feel this way but just once in a while it hits me. Between the Sjogrens causing my eyes to burn so bad when tearing up, or trying to swallow with no spit, or the Hashimoto's Encephalopathy causing my balance issues, and memory issues, the UCTD causing me all over itching, and fatigue, joint pain then it is the myositis causing me to have a hard time going up stairs, or walking.


The jerking and cramping has gotten worst again, cramping in places I never had it before, jerking where my leg lifts off the bed a good six inches if not higher, it takes me by surprise. If not for one thing, there is another. IVIG has helped, there is no doubt, and has helped with my small fiber neuropathy I am so thankful for that. It has helped with  my autoimmune colitis that I have which is huge. I know that IVIG is not a cure for any of the above, it is a hope to slow down the progression of the diseases. I do think it is doing that. But I do feel I need to have an increase back up with my Imuran (Autoimmune suppressant).


I see a new neuro this week. This is frightening to me. I love my neurologist I have had for the past 3 years, but since she has moved five hours away, I have not seen her since last spring. One year. I know I should be seen sooner then that. More often. After being in the ER last month I started to question myself, about not having a local Neuro just for situations like that. Who would know my history? It would be so hard with someone so far. So I took the big plunge and made an appointment with a local man who I was told was very good. I just pray he does not want to start all over again trying to dx me. I will not go through all that again. My ideal situation would be to keep both the one five hours away and the new one. As my case is somewhat complicated so they tell me lol.  So we will see after Fri, after my appointment.


Also going to start now with an endo for which I probably should have been going to for a few years  now, but just never have (too many specialists) But taking the plunge there too. (I am getting so brave) lol. That appointment is next month.


So until I come back and complain some more, good night and have a great week.


Susie

What's Up Doc?

Doctors, specialists, ER, IVIG, YIKES. I have had such a nice long period of time I did not have to go for tests all the time, like I was doing for so many years and got spoiled. So now we begin over again for which I hate.


The IVIG this month landed me in the ER. It has been causing me symptoms of breathing difficulties for which the doctor my rheumy gave me something else to take for five days before the treatment and I did. But by the second day of the IVIG I could feel it. I was breathing hard. By the time I got home I felt like I could not breath hardly at all. I was having such a time, I ended up in the er and blood pressure was 203/90, they treated it like I was just anxious, they did take xrays and that is all, no blood work, no nothing no ekg as for I have a horrible family history of heart disease. They were very nice but really? They gave me two adivans and said it was a typical reaction to the ivig. Well if that was the case, I would have been given steroids or Benadryl. So next day my doctor was called and he said same thing if it was a reaction why did they not treat it as such. HUM> Well my rheumy did give me preds before the ivig and it did help. But felt I could not breathe good for three days after. I did a lot of research and I did read that ivig can over load you with fluid, and cause you to be short of breath. So maybe that is it. But decided that I should see a cardio doc with my family history and my autoimmune diseases I felt it was and is a smart move. But oh I hate to start with another Doctor. Hate it.


So then I made an appointment for a neuro for my Hashimoto's Encephalopathy and small fiber neuropathy a new one, in town. My doc that I love is five hours away and when I was in the er last week I thought about this. What would I do if I needed her. I am going to see how this doctor is what he knows about the rare diseases I do have and just maybe if I am lucky he will be willing to work with my doc in Lacrosse so I can have both I know that is a lot to ask for. But I am hoping.


Then I decided I should go to my primary, for the high blood pressure I had in the er, and have her check my thyroid. Well she just did a TSH I don't know why but that is the only one she did, it came back high normal. Mine with HE is around 1.75 and this came back 3.95 well that is to high for me, with hashimoto thyroiditis too and hypothyroidism, and the HE. So I emailed her and suggested that maybe my thyroid meds should be upped and she emailed me back and said she wants to send me to an endo (Another doctor) GEE. I just don't want to start over again when I know a neuro can watch it with the HE I have. My Lacrosse doctor always did the thyroid panels and controlled my thyroid meds for me.


So I feel like here I go again. I don't like starting off the new year this way. lol


We had sad news today also, a member of our Hashimoto's Encephalopathy group young daughter who has HE passed away yesterday with complications of HE. I am just so sad. So sad. It is a crime that the medical world does not have enough information on this rare disease. Autoimmune diseases in general have not enough attention in the medical world, yet affects many people. More then ever before. This family has  now lost this beautiful young lady who had a  full life ahead of her.


We are working on awareness we are writing another edition of Understanding Hashimoto's Encephalopathy, one step at a time  to bring awareness to the public and medical world. We are still looking for stories of people with HE. So if you have HE, and would like to submit your story, please contact me. We would love to have your story.


We also are setting up a face book support group called "Understanding Hashimoto's Encephalopathy support group" This group is set up to help people who maybe looking for answers or needing information. They do not have to be dx with HE. We just want to support anyone who is out there going through the dx hell.


Once again thank you for reading and supporting my posts.


Susie

Great article on 10 most painful conditions

Top Painful Medical Conditions

The 10 Most Painful Conditions

Doctors divulge the most excruciating illnesses. Ouch.
By Karen Cicero  

Photo by Victor Prikhodko/Getty Images
After an ER doc determined that a tiny kidney stone caused my husband's sudden agony last year, a nurse came to deliver more pain meds and a dose of sympathy: "I passed a stone a couple of months ago, and it was worse than any of my four labors," she told him. Indeed, when Prevention asked doctors for their opinions about which conditions trigger the most horrific pain, kidney stones made the list. But even they're outranked by several other diagnoses with more intense, longer-lasting distress. Here, from bad to horrible, are the worst of the worst:
10. Post-Surgical Pain
Whether you were in the hospital for work on your shoulder or your ticker, you're at risk for nerve injuries that lead to constant pain. "Some research has shown that half of people who have chest surgery develop chronic pain," says Lynn Webster, MD, past president of the American Society of Pain Medicine. "In the future, we'll be able to identify, through genotyping, who is most at risk." In the meantime, he cautions patients not tough it out in the hospital because managing the acute pain lessens the risk of long-term problems.
9. Kidney Stones
The pain from these itsy bitsy masses (which range in size from a grain of salt to a pearl) comes on fast and furious, with the back, lower abdomen, and groin area being in the greatest discomfort. Most of the time, doctors prescribe pain-killers and advise you to drink plenty of water and wait. Once you pee out the stone, the pain subsidies almost immediately. But don't think you're out of the woods yet: The doctor will probably suggest that you have the stone tested, because, depending on the type, changes in your diet may prevent the whole ordeal from happening again.
8. Chronic Lower-Back Pain

Photo by I Love Images/Getty Images
"Lower back pain is like death and taxes; everybody gets it at some point," says out Sean Mackey, MD, PhD, chief of the division of pain medicine at Stanford University School of Medicine. About 9 in 10 of those patients recover fairly quickly, he says, but for the remainder, the pain becomes chronic and life-altering. "The severity of the original injury and how prone you are to anxiety plays a role in whether your pain will persist," he says. Physical therapy focused on core strengthening is one of the most effective treatments.
7. Peripheral Neuropathy
Commonly caused by diabetes, damage to the tips of the nerves going to the fingers, hands, and toes trigger this pain. "I've been told that it feels like walking on razor blades," says Charles Kim, MD, assistant professor of rehabilitation and anesthesiology at NYU Lagone Medical Center. Anti-seizure medications calm down irritated nerves, but Kim says exercise is also important to improve blood flow.
6. Cancer Pain
Whether it's from the disease itself, treatments like chemo, or a combo of the two, some cancer patients—especially those with advanced disease—suffer immense pain. Among the most agonizing cancers: pancreatic, brain tumors, and sarcomas. Doctors prescribe medications based on the type of pain; for instance, steroids may help pain caused by swelling.
5. Postherpetic Neuralgia
It's the pain that lingers in about 10% of patients who come down with shingles, the mature version of chickenpox. (After you have chickenpox, the virus lies dormant in your brain and spinal cord and may re-activate as shingles as you age.) "When the shingles rash goes away, some patients are left with burning nerve pain that's difficult to treat," says Mackey.
4. Trigeminal Neuralgia
Infections, tumors, and other conditions can trigger this pain in the trigeminal nerve, which carries sensation from your face to your brain. "Patients describe it as feeling their face is on fire," says Kim. The pain tends to be throbbing, and in some cases, occurs every few minutes with the right side of the face most often being affected. One of the go-to treatments: anti-seizure medication.
3. Interstitial Cystitis
It's a fancy way to refer to an inflamed bladder. "Patients tell me that it feels like their pelvic area is burning all the time," says Webster. In extreme cases, sufferers may urinate 60 times a day. Physical therapy, nerve stimulation, and medications, such as anti-inflammatories, help provide relief.
2. Complex Regional Pain Syndrome
Although the name of this condition sounds bogus, the pain is all too real, typically occurring in one of the limbs after trauma or simple injury—even a run-of-the-mill twisted ankle or broken arm. The pain and swelling starts in a small area then spreads throughout the limb, causing it to feel "like a blow torch," in the words of one sufferer. "I saw a patient who came in on winter day with one of his pant legs cut off," says Kim. "Just having the material touch his skin brought about too much pain to bear." Doctors aren't sure why some people develop the condition, though they generally agree there's a genetic component, and more women are affected than men. An intense combo of rehab, medications, and neuro-stimulation helps control the pain.
1. Cluster Headaches

Photo by Dirima/Getty IMages
More debilitating than a migraine, cluster headaches produce sudden, sharp pain that's usually concentrated around one eye or one side of the head, and episodes occur in clusters for weeks or months. "It's nicknamed the suicide headache because patients have suicidal thoughts to get away from the pain," says Mackey. "My patients have told me that it makes them want to bang their heads against a wall or take a drill to their head." While the cause isn't known, steroids, calcium-channel blockers, and anti-seizure medication may bring relief for sufferers, most of whom are men.
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Merry Christmas pain or no pain

I love the holidays and always have since I was a little girl, (many, many years ago). lol. So when I knew I had to have a three day treatment of IVIG during December I was bummed out. It is not just the three days of sitting in a chair hooked up to two IVs for four-five hours, but it is the sickness that comes with it for days after. I was still nauseated Monday after having the IVIG Wed, Thurs, Fri so sick Sat, Sun and Monday and hoping today is better. I have hope. But gee it is Dec. Who has time to take a week off in the middle of Dec? lol. But I have made myself understand it is ok. If I do not take care of  myself then how can I enjoy my family when they come for Christmas, or that beautiful Grandbaby. So sit on my butt and do  nothing for six days and just know I will get everything done regardless and if I don't, I have a good excuses lol.


I have to say the IVIG did really help last month, I felt good right up to the time of getting the new treatment this month. This is the first time that has happen. So it was great to have that energy. Still pain, but with energy it is not as bad.

I do have an appointment with the rheumy next week, I will talk to him about a few things that are concerning me about the IVIG. Number 1 when I am done, I feel I can not breath that good, chest is heavy I read that Ivig can cause this to happen as it is infused it can fill your cavity's around your lungs, which then takes time to get rid of as the IVIG fluid takes longer to leave the body more so then normal liquid. But in a contradiction it also is said it dehydrates your body thus the reason to hydrate well during and after infusions. It is still confusing to me. But I feel so bloated after for about 4 days. Also I feel some of my encephalopathy symptoms are getting worst, or coming back or flaring or how ever one wants to put it. Now whether or not it is the time of the year but I think it is because the Imuran was decreased too low. I find myself not being able to decide on what to do with my hands when holding something in both, I look at the right, I look at the left one, and I am confused on what to do first. I use to get this a lot. My brain is on overload again, over whelmed, and this is not from Christmas doings as I am ready completely. But other things in my life. But I normally could handle. So this is making me concerned. I know they do not like you on the big guns like Imuran for to long but I can tell, I think it needs to be increased. Also balance is bad, almost fell into the Christmas tree, I don't know what I would have done if I did not catch myself from all the presents that were under the tree. Ripped a few open trying not to take the tree out. But it scares me. Also having constant headaches. Everyday. Nothing works for them, nothing. So I will ask him he is not my  neuro but he is the one that decreased the dose of the Imuran because the IVIG was working so well for other autoimmune diseases.


Well another Merry Christmas and a Healthy and happy New Year to you all and I appreciate you all reading my post. It gives me a purpose. :).


I love you ,


Susie

I thought this was such an informative article about two of my issues I thought I would post it and hope it helps others too, it does explain it to me why I feel the way I do. Sometimes I need that.

Top 10 Peripheral Neuropathy & Sjögren’s Facts:

1. Recognize that neuropathic pain is a chronic disease. Just as most causes of neuropathies and neuropathic pain in Sjögren’s do not come on suddenly, reduction of neuropathic pain can take a while.  

2. Initial and predominant neuropathies in Sjögren’s can occur anywhere in the feet, thighs, hands, arms, torso and/or face.

3. Many different symptomatic therapies for neuropathic pain are available. Both physician and patient awareness of potential benefits and side-effects can help tailor an appropriate approach.

4. While the class of tricyclic anti-depressants (TCAs) often constitutes a first-line tier of therapy in other neuropathy syndromes, the TCAs can increase mouth and eye dryness and therefore are not routinely used as front-line therapies in most Sjögren’s patients.

5. Electrophysiologic tests may help in the diagnosis of neuropathies affecting larger nerves which are coated by an insulator called myelin. However, neuropathies affecting smaller-fiber nerves that lack this myelin coating cannot be detected with these tests.

6. Special diagnostic tests, including the technique of superficial, punch skin biopsies (small biopsies of three millimeters and not requiring any stitches), can help in the diagnosis.

7. A relatively rare neuropathy can cause significant weakness in Sjögren’s patients. In contrast to other neuropathies which develop slowly, this neuropathy can present with very abrupt-onset of weakness. This so-called “mononeuritis multiplex” occurs because the blood-flow through vessels which nourishes nerves is suddenly compromised.

8. In general, immunosuppressive medications are almost always warranted to treat “mononeuritis multiplex” neuropathy. In contrast, the role of immunosuppressives is not well-established in other neuropathies, including neuropathies that cause pain but are not associated with weakness.

9. Sjögren’s patients frequently wonder whether pain associated with a neuropathy means they are at an increased risk for more severe motor weakness. While there are exceptions, if weakness is not present at onset, it most likely will not occur.

10. Neuropathic pain can be alleviated and assuaged, although there may initially be a “trial-and-error” process with different and perhaps multiple agents.

The information from this post, provided by rheumatologist

Fourth IVIG Treatment

I had my fourth treatment this past week. Wed, Thurs, Fri. It is Monday and I still have a headache. Now whether it is from the IVIG or some other wonderful thing I have, it is there, can not hardly see. I know I did not take it easy after the treatment that so many tell you to do, but no doctor has ever told me to go home and rest, it is just that you feel so crappy that you do. LOL. This time I felt like I was going to collasp. My legs still do not have the strength in them. I have done a lot, this weekend regardless, pushing it, it is this time of the year, and giving up almost a week a month drives me nuts. But if it helps it is worth it. The first two I had was like a miracle drug, I walked a mile, I did things around the house I have not been able to do, but now the last two are just sort of bla, do  not recognize any difference. I did read that there was a bad batch of IVIG and maybe that was me, I also read that a doctor had told one of his patients that it is like a crap shoot, because you have 1000 people donating their plasma and you never know what you are getting. That makes sense to me, but for 24,000 a shot, I would think I should be running a marathon by now lol. I feel guilty over the cost of this medication, I really, really do. I pray it helps me stop the progression of my autoimmune diseases and sfn.


I don't know if I am having a relasp of HE (autoimmune/ Hashimoto's Encephalopathy) or not. I have headaches the shooting brain pain, my legs are so bad, I can not walk around only in the house, my balance is iffy. My brain hurts. Truly it does. My eyes hurt. My rheumy cut back my Imuran to 25mg a day compared to 200mg I was taking when first dx with HE and myositis. But this has been a gradual thing, was on 50mg which seemed to be ok, but now three months into the decrease I am having these symptoms, and even dragging the right leg. I can not believe this as getting the IVIG should be enough but I guess it is not. I am going to try to hold out until I go see the rheumy in Dec, but if I can not I will email him and my neuro and see if they can discuss this between the two of them. I am so sure it is due to the lowering of the med. He wants me off because it does have serious side affects, such as cancer, so I respect him for wanting me off.


Well hope to write more later hopefully I will tell you all I am dancing, and singing, and walking miles lol
Susie