First Time Post
Hello! My name is Jo, and I may have Lupus. I do have Hashimoto's thyroid disease, and among many, many other symptoms, I have a great deal of joint pain and muscle stiffness. Last week, in my regular bloodwork, my doctor decided to test me for inflammation. My ANA was 1/160, so she is referring me to a rheumatologist. I have seizure-like episodes of unknown origin, balance problems that come and go, and EXTREME exhaustion. I could go on and on with other symptoms, but I'm guessing mine are nothing unusual to this group. Like many of you, I have been bounced around from one specialist to another. The last three years of my life have been more than challenging. Since I was finally diagnosed in February with Hashimoto's and treated with Synthroid and Cytomel, my neuro symptoms have gotten better. I have only had one "seizure" since I began treatment. But now I'm wondering if that's just a coincidence. If I do have Lupus, perhaps I may be in remission. I don't really even know enough about Lupus to discuss it intelligently, but I'm trying not to research too much until I have a diagnosis. I'm tired of doing the constant symptom assessment -- it can get all-consuming. I'm glad I found this site though. If I do get a diagnosis (so praying I don't), it will be great to have a place to go for help and support.
Welcome to WHL. Many of us have overlapping autoimmune diseases. They tend to run in packs. I have an overlap of Lupus, Sjogren's, RA and Psoriatic Arthritis. Hashimoto's is an AI disease, and we have a few members here who have experience with it.
I often say that AI diseases are spread out on a spectrum and our bodies choose "one from column A, two from column B" Right now, you are in the stage of figuring out which ones your body has picked.
Feel free to read any threads that interest you, including the stickys, and then ask questions. The more you know, the better.
First I would like to welcome you to WHL. I also want to let you know that having Lupus is not a criteria for membership. We are open to people with all kinds of AI diseases ( like you have ) as well as people still in the process of getting a diagnosis ( which can take years).!
I am one like you. I too have seizures. There are not many of us but it does help to know that we are not alone. It also helps to know that once a doctor admits that we have an AI disease they often come to see that we have several. We call it overlapping illnesses. You are not strange in these ways Lupus affects us all differently so knowing your ssymptoms and about the diseases is a good thing! You must always be your best advocate
Sorry I can't write more but I am on my phone and it gets a little difficult.
I look forward to getting to know you and good luck as you travel down the doctor path!
Success is not final, failure is not fatal: it is the courage to continue that counts.
hi jo, and welcome.
i also hope you do not have lupus.
you have enough already....
but you are very welcome to stay with us if you wish.
we are open to friends and family of lupus sufferers.
as was said earlier, we have a few members with the same issues as you, so you are not alone.
please feel free to read a few of the older posts.....
they are our personal experiences with all of our ai diseases.
I hope your new rheumy can give you some answers.
Hey, Jo, I just wanted to join the welcoming chorus. I'm new to WHL, too.
I can definitely sympathize with the stress of going through a diagnostic process. I've had strange symptoms for over a year now (muskuloskeletal pain, skin lesions, other stuff), and only in the past few week did my rheumatologist decide to call it Undifferentiated Connective Tissue Disease (UCTD) and start me on Plaquenil. And he still thinks I'll get some other, more definitive diagnosis along the way. But yah-- this process and the not knowing is a serious stress, so remember to take care of yourself mentally (I see a chronic illness counselor, and she is AWESOME). And use WHL as a resource-- there's a wealth of information already posted here, plus a myriad of experiences represented by board members. This place is tremendous.
So, welcome, and I hope you're doing well!
The Following User Says Thank You to Derrie For This Useful Post:
Thank you, everyone, for the warm welcome! I can't believe there are others who have seizures. I'm so sorry for you! T-gal, are your seizures non-epileptic? I have been to two different neurologists, and neither of them have mentioned an autoimmune disease. One sent me packing saying I had a psychiatric problem, and the other never gave me any indication of what she attributed them to -- she just kept telling me they were NOT seizures. Well, she never saw one. Everyone who has ever seen me have one says they are seizures. I had already been diagnosed with Hashimoto's, and in my research, I found that in extreme circumstances it can cause seizures, but again, my neuro said that since these did not show on an EEG as a seizure, they were not.
I finally found a nurse practitioner who would listen and try giving me thyroid meds even though the blood work initially showed high antibodies but not low levels (it does now, and we are still trying to get it corrected). As things often work out, it seems I found someone with a personal connection to both Hashimoto's and non-epileptic seizures. Her husband has Hashi, and her son went through six years of non-e seizures after a terrible car accident. She was the FIRST of many doctors, including neuros, endos, and internists who actually listened to me. After a few weeks on the thyroid meds, my seizures stopped, and I have had only one since. YIPPEE! At least I don't have to plan escape routes for everywhere I go. Tgal, I'm sure you can relate. But the rest of my symptoms are still present, and some are getting worse. I now have a little man (lol!) playing a Kazoo in my ear off and on all day. He plays much louder at night and early in the morning. That's when the joint pain and stiffness are worse as well. I have learned to live with those symptoms, and I can ignore them most of the time. What I can't live with and ignore is the overwhelming exhaustion.
Most days, I have to mentally whip myself to even get up and get ready for work. I'm a teacher, so being exhausted is a difficult state to manage amongst energetic middle schoolers. Summer's almost here, all I want to do is NOTHING! Last summer I was having seizures, in fact, I had to go on disability for the last four months of the school year. I made it through the whole year at work this year, but It's been a long time since I felt good. I just want my life back. I want to be able to play with my grandchildren again. I want to be able to walk four miles a day like I could two years ago. I want to be able to go out with friends at night and not be incapacitated for two days afterwards. I want to be able to go shopping until I find what I want. I'm better than I was six months ago. Like I said, I'm not having seizures. But when I feel that electric whooshing in my head, when I get off balance, it is always in the back of my mind that they could come back at any time. Thanks for letting me vent! And again, thanks for the warm welcomes!
I have never (knock on wood) had a grand mal seizure. Mine are partial seizures. I am aware of what is going on around me, but I can't respond. I kind of zone out. My right side shakes, my eyes go up and move from side to side, and I make a repetitive sound with my mouth. My husband says it's like I'm trying to blow bubbles with gum. I utter a "P" sound while that happens. They start with a sensitivity to sound. The next step is a whooshing, electrical feeling in my head. Sometimes I can get past those symptoms, and sometimes they roll into a seizure. I know I'm about to have one if my speech begins to slur. That's the first imminent sign. I have about thirty seconds after that happens to get somewhere safe or to get help. My classroom is about 50 feet from the nurse's office, and I usually make it there just in time. They last anywhere from 30 seconds to 2 minutes. I've never lost consciousness, but I have had instances where one rolled into another, sometimes five or six before it's all said and done. Afterward, I'm a veggie the rest of the day.
The last neuro I went to did a head, neck, and spine MRI. As shown on the other MRIs I had, I have only one white matter lesion on the left side. No one seems concerned about that. Apparently a lot of people have those due to age, migraines, and other common problems. She didn't mention any "reduced bloodflow." I've had two video EEGs. The first one, the doctor said he was comfortable diagnosing left temporal lobe epilepsy because, even though he saw no epileptic activity, I had focal buildups. He put me on seizure meds, but the seizures got worse then. I went back a month later for another video EEG and he said I did not have epilepsy. He never had an answer in regard to his first diagnosis and the build ups. Every time we asked, he looked sort of stumped.
He sent me to a psychiatrist who put me on zombie medicine, Klonaprin and Pristiq. Every time I complained about what I thought were side effects, he said he thought it was anxiety and depression, and he upped the dosage, even though my husband and I both told him I was NOT anxious or depressed. Knowing what I know now, I believe what I thought were side effects were just more CNS symptoms from my AI disease (if that's what I have). I finally weened myself off all the meds, and as soon as he signed my release to go back to work, I quit seeing him.
I got much better after getting off all those meds. In fact, for a couple of months, aside from the two or three seizures I was having a month, I felt better than I have in a couple of years. When I started feeling bad again, someone suggested it might be menopause symptoms, and I went to a doctor who prescribed bio-identical progesterone. While that didn't work, that doctor's visit began a slow journey to where I am today. She checked my thyroid antibodies. Up until that point, the endo and neuro I had seen had only checked my T3, TSH, and T4. The endo who did those tests did not test for the antibodies. My antibodies were 2000, extremely high, and I had a nodule on my thyroid. She sent me to an endo who diagnosed Hashimotos and a vitamin D deficiency. She said the neuro symptoms were probably from the low D and that she did not believe in treating Hashi patients until their hormone levels were off. I took high doses of vitamin D, but I felt worse and worse. She scanned the thyroid again, and the nodule was gone, so she said come back in 6 months.
I found another neuro who specialized in MS. Just from my own research, I was convinced I had that. All my neuro symptoms, my off balance issues, my joint pain and stiffness, and the seizures pointed in that direction. She agreed with the endo that the Hashis was not the problem. She began testing -- complete nerve study and MRIs. She thought I might be having complicated migraines because of the slurred speech at "seizure" onset. She started me on Topomax, and I did get better, although the seizures remained -- still a couple per month around my period as they had been except for a few months when I was so sick and having 3 or 4 a week. Then the bottoms of my feet and the palms of my hands started hurting (like I'd slapped something) and my ears started buzzing. I went back to the neuro, but I could tell during that visit she was going south (a term my husband and I used when we could tell the doctor was leaning toward the raving lunatic diagnosis), so we didn't go back. Shortly after that, this February, we found Charla, the nurse practitioner who has finally given me some hope. She was convinced the Hashi was the root of my problems and so she started me on a low dose of Synthroid. With my hormone levels turning up low in the bloodwork, we have slowly increased it, and now, since my T3 was not converting as it was supposed to, she has added Cytomel. Since the seizures stopped, my biggest complaint has been the joint pain and extreme exhaustion (some days okay, some days really bad). In addition, the tinnitis still remains as does the hand and foot pain. Oh, and did I mention I mysteriously developed high blood pressure? Yep! After a lifetime of having low-normal pressure, it suddenly got high. So last week, she checked my ANA, and it was high. And now I'm waiting on a rheumy referral. So here I am -- that's my story (the short version, anyway). Thanks for sharing your story with me, Tgal! It does help to know there are others out there like me.
I'm on my phone so this will be short. The majority of mine now are partial as well. Right sided that means whatever is happening is coming from the left side of the brain. My right wrist and foot seem to make circular movements and it take me a bit to come back to a place of respondinf. funny you mention low BP going high. We had that discussion on here a few weeks ago. Seems to be rather common
Keep learning.!you are your own bees advocate. We are here for yiu
Success is not final, failure is not fatal: it is the courage to continue that counts.