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jolynnhughes
05-27-2012, 03:33 PM
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.

magistramarla
05-27-2012, 08:05 PM
Hi Jo,
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.
Hugs,
Marla

tgal
05-27-2012, 08:05 PM
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!

steve.b
05-27-2012, 11:44 PM
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.

again welcome.

running girl
05-28-2012, 03:44 AM
Welcome Jo,

I hope your new rheumy can give you some answers.

Take care,
Brenda

Derrie
05-28-2012, 09:43 AM
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!

jolynnhughes
05-28-2012, 01:40 PM
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!

tgal
05-28-2012, 02:52 PM
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!

In many ways this could be my story. I was first diagnosed with SCLE Lupus (the kind that will not affect your organs). When the seizures began (ok, when I first had a tonic clonic FKA grand mal) I was told it had nothing to do with the Lupus so go to a neuro. Turns out I had been having them for quite awhile just not "major" seizures. For months I had been smelling burning rubbing and tearing my office apart looking for the machine that was causing it! Turns out only 2 things cause that. Brain Tumors and Seizures. Who knew?!

To answer your question, no, mine appear to be non-epileptic as well because they can't get a reading on them. I was SOOOO discouraged! Thank goodness I ran into a doctor when I was in the ER one day that had Lupus as well. He looked at me and calmly stated "Well of course they can't find them on the traditional machinery. These are caused by a lack of blood flow in the brain which is caused by inflammation. AI diseases can affect the organs just like everything else and the brain is an organ". I was so relieved I cried. FINALLY someone understood. It all made sense because my last 2 MRI's showed reduced bloodflow from the neck into the head on my left side and all of my seizures are right sided (except for that grand mal). I do, however, take 3 seizure meds. 1 is for my TG pain and the other two are for the seizures themselves. They have helped but they are not gone.

I had to stop working over 3 years ago and have been uninsured since then. Thankfully I get my medicare in Oct and can return to the specialists that I had to drop because I couldn't afford them on SS. I am currently just seeing a doctor that keeps me in my meds until I can find someone to start helping again.

Welcome to WHL. You will find people here that understand exactly what you are going through. Although Lupus affects us all differently there are usually at least a couple that have been through what you are going through (kind of like this). If you haven't read it yet, please go read The Spoon Theory (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/). It really does help explain how we feel and how our lives often work when flaring.

jolynnhughes
05-28-2012, 04:48 PM
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. :)

tgal
05-28-2012, 04:57 PM
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

magistramarla
05-28-2012, 09:28 PM
Jo,
I'm a former high school Latin teacher. You are a brave woman to teach middle school, also known as hormone halls!
I designed the Latin program for a brand new high school in San Antonio, Texas in 2002 and taught there until spring of 2009.
I was just beginning to have a few symptoms when we opened the school. I was diagnosed with Meniere's because I was having tinnitus and dizziness.
I was having recurring skin sores that my doc wasn't sure about, and my joints were beginning to bother me, so I thought that arthritis was beginning.
In the fall of 2006, my beloved mother-in-law passed away, and the stress made my symptoms show up. I had some bad UTIs and was peeing blood.
In the spring of 2007, my voice began to falter, but I blamed it on the germs that our crop of "Katrina Kids" had brought with them.
By April my hubby convinced me to try a new PCP. She found that my ANA count was high and sent me to a rheumy. She also sent me to an ENT to check on the throat and the Meniere's. Luckily for me, he recognized that what I have is Spasmodic Dysphonia - the vocal cords spasm uncontrollably. He sent me to an otolaryngologist, who started Botox injections into the vocal cords - it really works!

After two tries, I found a great rheumy, who figured out that I have Mixed Connective Tissue Disease - an overlap of Lupus, Sjogren's, RA and Psoriatic Arthritis. She decided that the Meniere's was probably Autoimmune related, calling it Autoimmune Inner Ear Disorder.
In 2008, I had a bad bout of Avascular Necrosis in my right knee and had to have knee surgery during winter break. I taught that entire year using a rollator to get around and to sit on in front of my classroom. My students had been used to me falling in front of them for years.

In early 2009, my hubby was given the opportunity to apply to go for his PHD at The Naval Postgraduate School. Our youngest daughter was married in February, and two weeks later, Jeff got orders to Monterey, California. I helped the school to find a new Latin teacher, we cleaned out and rented our house, and now I'm enjoying the west coast and no stress. I serve on the executive board of The Officers' Spouses' Club, so I manage to keep somewhat active, but it certainly is nice to not have the stress of working. I do miss my students, though!

Now my leg muscles are constantly spasming, so I'm going to be evaluated for one more thing in July. The doc who does my Botox shots in San Francisco thinks that I might have a dystonia in my legs, called Spastic Paraplegia. I suspect that all of this stuff is somehow related.
Your nurse practitioner sounds great - like the rheumy that I had in SA. Hang on to her! Hopefully she can help you to get some answers and to find a good rheumy who can work with her.
Hugs,
Marla

BonusMom
05-28-2012, 09:36 PM
Welcome to WHL!

I haven't had seizures, but also have complicated migraines (and Sjogren's, Gastroparesis, Raynaud's, Mitral Valve Prolapse, asthma, blah, blah, blah).

This is a great group of people with loads of info. Fortunately, people are pretty responsive, unlike other, ahem, forums. WHL rocks!

jolynnhughes
05-29-2012, 05:33 PM
Hi Bonus Mom!

Thanks for replying and telling me your story. Wow! I can't imagine having all those terrible things happen to me. I'm really scared about all this. Today, my hands and feet are so sore. The bottoms of my feet are so sore I can hardly stand on them. This is new. I have had a little soreness, but nothing like this. And the look weird. They are white in places and then really red in other places. Very strange. I'm trying not to let my imagination run away with me, but I do think I have problems in all the body systems except my kidneys. So far, I have no symptoms related to that. But heart, cns, lungs, skin, I have a problems in all those areas.

BonusMom
05-29-2012, 07:22 PM
Oops! I didn't mean to come off as a woe is me. Truly, I have it a whole lot better than many-really. I am very, very fortunate to still be able to work. Although I was pretty sick when initially going through the diagnostic phase, I'm only now in what I'd consider to be my third "flare." My flare meter is my digestive system--when it acts up, I know I'm in trouble.

I may have a lot of different diagnosis, but none of them are disabling at this point. Besides, I've got to figure out how I'm going to conquer a zip line before I turn 50--and I'm afraid of heights!

magistramarla
05-29-2012, 08:50 PM
Jolynn,
What you are describing sounds a lot like Raynaud's Syndrome. Many of us seem to have it, since it seems to accompany many of our AI diseases.
There are quite a few threads here where we have discussed it - just type Raynaud's into the search.
My toes are always cold and turn funny colors, especially when I am tired or stressed. Lately, my fingers are cold and stiff, too.
Welcome to the wonderful world of AI!
Hugs,
Marla

jolynnhughes
06-02-2012, 02:32 PM
Magistramarla,

It appears you were correct about Raynaud's Syndrome. I had to go to my regular doc yesterday because of my hands and feet. She said she thought that was what it was. Unfortunately, she said she thought I needed to try and tough it out until I saw the rheumatologist. She offered to give me pain meds but said that was all she felt comfortable doing. I don't like taking that stuff though. My first rheumy appt. isn't until the 20th. That's the first time they had a new patient appointment. I tried others, but their wait time was even longer. Today, I have a weird looking purple spot on one of my fingers. It's almost looks like I broke a pencil lead in there. Strange!

Can anyone recommend something I can do to feel better between now and June 20th? Of course I know to rest and try and limit stress. Thank goodness, yesterday was the last day of school, so I won't have to manage work and feeling badly at the same time. But this exhaustion, joint pain, and skin burning is getting difficult to tolerate. Three weeks is an eternity when you feel so bad! Suggestions????

theLword
06-04-2012, 07:56 AM
Hi Jolynn,

Unfortunately even after you see the Rheum there might be some time before you start feeling better. In regard to the Raynaud's -- Calcium Channel Blockers are a good options (as long as you don't have low blood pressure). This can also be prescribed by your Primary Care Doctor (mine is!). Personally I take Amlodipine and have noticed a significant difference. Also, (not sure if you're in the US or not -- so don't know what season you're in) in the winter try and wear warm wool socks.. I'm unable to wear multiple layers of socks because it actually cuts off my circulation and makes it worse. In the summer beware of air conditioning and sandals that might be too tight. It's also useful to use a foot powder in the in morning so help prevent lesions. For my hands.. I'm usually just always sitting on them :) Gloves aren't really acceptable in June! haa

I hope you start feeling better soon!

magistramarla
06-05-2012, 09:23 PM
Hi Jo,
I second what M suggested. Bed, Bath & Beyond sells some nice fuzzy sleep socks. I have two pair of them and I wear them to bed each night. A few hours later, I wake up sweating and pull them off, but they sure help to warm my feet when I go to bed.
LOL- I warm my cold hands on my poor hubby and watch him squirm! However, you can buy gloves with no ends for the fingers - look online for "arthritis gloves".
When my grandson was born in January 2010, it was cold and snowy where my daughter lived. She had a lot of complications, and I stressed out. My toes swelled up and turned purple, and I was barely able to walk.
Unfortunately, all my rheumy suggests is "warm socks".
Hugs,
Marla

Colleenc
06-06-2012, 05:34 PM
Hi Jo, Just reading through your post and thought I would give my two cents about the Raynauds. Calcium channel blockers can really make a difference so can Beta Blockers, however if you have problems with blood pressure or like me undiagnosed syncopes (you posted on my thread in Laurie's lounge, I'm the one with all the stitches and falls) they can cause major problems. My saving grace for the very long cold winters in the Canadian North is my Hot Tub. As soon as I feel it I hop in. Sometimes thats 2 or 3 times a day! A regular old warm bath will do too.I also bought a bag full of oats that you warm up in the microwave. It's reusable, smells nice and gets real warm, and of course as some of the other ladies have said a good pair of warm wool mitts and socks can work wonders.

Colleen