Tag Archive | Diagnosed

Pernicious Anemia

Pernicious Anemia is an autoimmune disease. I have noticed that many people that have Sjogren’s also have low B12 counts. I always wondered if there was a connection. Now that I know it is an autoimmune disease I am almost sure there is. Most people who have one autoimmune disease tend to get others. In my case I have Sjogren’s Syndrome, Fibromyalgia, and Raynaud’s, and as my doctor told me yesterday Pernicious Anemia.

Pernicious Anemia is an autoimmune disease that attacks the intrinsic factor. This is a type of protein that helps your body absorb the B12 in your stomach. The body needs the B12 to make red blood cells. If you have a B12 deficiency it does not mean you have Pernicious Anemia. There are tests done to diagnose you. Some people just don’t eat the proper foods to get the B12 in their system. These people can take B12 supplements. If you take supplements use the liquid or the ones that dissolve in your mouth. For people with Pernicious Anemia we need to bypass the stomach and make sure the B12 goes right into our bloodstream. I give myself shots to keep my B12 levels up.

I have read that with a B12 count of 600 or less you can start showing signs of memory loss. For many it doesn’t start until around 400. In my case I start to notice it between 600 and 700. Due to our standards many doctors believe that you must have a count of 200 or lower to be considered deficient.  Each person is different.

I was diagnosed with low B12 5 years ago. I didn’t know exactly what Pernicious Anemia was. I finally started doing more research this past week. Even with giving myself monthly B12 shots my B12 levels are still decreasing. I am now down to 303. When I was first diagnosed through a bone marrow biopsy my level was around 290. I don’t remember exactly what it was since it has been so long.

When I was first diagnosed I had really bad shakes, itchy neck (not listed as a symptom but I know others that have this as well), extreme memory loss (brain fog), bruising, irrational behavior, gastro problems, fatigue, ADD symptoms, depression, vertigo, tingling in my hands and feet, shortness of breath, confusion, nominal aphasia (forgetting names of objects), mood swings, insomnia, arrhythmia (fast heart beat), and vitiligo )white patches that develop on the skin). I’m sure there were less severe symptoms that I had but these are the ones that I noticed on a day-to-day basis.

Almost all of these symptoms are back now that my B12 is getting so low again. As I was getting ready for bed last night I had a few things to do around the house. It would pop into my mind and I’d tell my husband that I was going to do this or that. I’d start to walk off and forget immediately. It’s good that I told my husband because I had to ask him every time what I was doing.

In the past I was told I had ADD and given medication for it. It made me extremely hyper. They decided that  it was not the cause of my brain fog. My blood work was off so they thought that I might have had leukemia or lymphoma. That is how I ended up having the bone marrow biopsy. Trust me the simple blood test for B12 would have been much better!

Once I was diagnosed I did 1ml shots for 7 days, 1ml shots every week and then I started them once a month. I felt a difference once my levels started going up. I realized that I wasn’t crazy and that I could be normal again! I really thought I was losing my mind. When I would talk about something and go to say a word like pencil I’d say turtle instead! I would then not be able to think of the word that I was trying to say. One day I was talking to my mom about something. I don’t remember what it was but I do know the word started with a B. All I could say was “blueberries” over and over again. Again this was one of my crazy moments!

When I noticed my B12 levels going down this time around I asked my doctors how this could happen when I was doing the shots. They did not know. I had to take it upon myself to research and try to figure out what was wrong with me again. It turns out that some people just need more injections to keep it stable. I printed up the research and brought it to my doctor yesterday. I did convince her to let me do more shots. My plan was to do the same thing I had in the past but she would not let me do them everyday. I will be doing them every week for a month and then go to every two weeks. We will monitor my levels and see if they are going up, staying the same or still going down. I am hoping they will go up and that I can get back to normal.

 I don’t understand why some doctors won’t let a patient take the shots. They have been told what is normal for B12 levels and they won’t budge on the matter. You can not have too much B12. It can not harm you. Many people have to fight to get the shots. It turns out that my mom has low B12 also. She has many of the same symptoms that I have. She had the test and the doctor told her it was normal. I made her find out what her B12 level was. Just because a doctor tells you it is normal it may not be. Hers was in the 300’s. I had her ask the doctor for the shots and lucky for her the doctor did prescribe them to her.

If this post jumps around I am sorry. I am having trouble concentrating but I did want to get it out there. I have read that many older people who have dementia actually have low B12 levels and by taking it they can be normal again. I hope this helped in some way.

Some helpful links:

PubMed Health

Pernicious Anemia Society

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Seizure???

So the doc thinks I’m having mini seizures. From my latest description and the meds I’m on that is the route we are heading in now. I’m on a new medicine, Lamictal. He said it is for seizures and very safe. Not sure what his idea of safe is when the warning says I can get a life threatening rash!?! LOL! What kind of rash is life threatening? I did find that Lupus can cause these types of seizures. My old Rheumy said I was in the beginning stages of Lupus. Does this mean I’m further along now? Blah, all this sucks.

For having a new diagnosis I think I handled it pretty well. I usually freak out and drink too much. I must be getting used to this shit.

So, we now have Sjogren’s Syndrome, maybe Lupus, Fibromyalgia, and Raynaud’s. I wonder how many more I can add before the end of the year.

Scary…

…and not “BOO” Halloween scary!

I know I have talked about my migraines before but they are kind of scary. I’m not sure as to what to do when I get them. I’m not talking about my normal migraines I’m talking about the kind that I had yesterday. I guess that is what it was. It started a few years ago. I would get confused for a few hours. Not be able to talk correctly. I’d slur my words or say the wrong words. I’d be dizzy but that was about it. This year it has upped the ante on me.

Earlier this year I woke up in the middle of the night and could barely move the left side of my body. I could move it but not make it do what I wanted it to do. I could barely talk at all. I was slurring my words and could barely get them out. The left side of my body was also numb and tingling. It lasted about an hour. I had an MRI, EEG and EMG and all the tests were normal. I’ve been told that these issues are probably caused by migraines. Not they are.

Yesterday I got up around 9am and by 10:30 I was dizzy and couldn’t think. My arms felt like they weren’t part of my body. I felt like I had been drugged. After a bit it went away but kept coming in waves but not as bad as the first time. By dinner time I tried to cook and it got worse and worse. I did get everything out to cook, but I didn’t know what to do with it. I just stood there looking at everything  and didn’t know where to start. My husband came home and I told him that I had lost the chicken. He started looking for it. I had tried to explain to him what was going on but I couldn’t so I called my mom, since she knew already. She asked if I needed to go to the hospital. I told her I didn’t know and that I would let her know. As I started to go back to cook I remembered that I had to go somewhere. I wasn’t sure where, but that is what kept going through my mind. I had to go somewhere and take a shower first. It’s good my husband was there to take over dinner. After my shower I remembered that I had to cook dinner. That was when my husband came in and told me I was going to the hospital. I was so confused and couldn’t think straight at all. It was scary.

Today I have been a little shaky and my legs have been weak. For the most part I have been OK. I have read that if I have those types of issues that I shouldn’t take my migraine meds so I’m not sure how to handle them. Anyone out there have them? I’d love some advice. I’m going to my Neuro tomorrow. I’ll ask him about it. I want to know for sure if these are signs of a migraine or if they are something else. It all sounds right…

Rare migraine conditions include these types of neurological auras:

Hemiplegic migraine: temporary paralysis (hemiplegia) or neurological or sensory changes on one side of the body. The onset of the headache may be associated with temporary numbness, dizziness or vision changes.

Retinal migraine: temporary, partial or complete loss of vision in one eye, along with a dull ache behind the eye that may spread to the rest of the head.

Basilar artery migraine: dizziness, confusion or loss of balance can precede the headache. The headache pain may affect the back of the head. These symptoms usually occur suddenly and can be associated with the inability to speak properly, ringing in the ears, and vomiting. This type of migraine is strongly related to hormonal changes and primarily affects young adult women.

Fibromyalgia

Well, I went to the Rhuemy yesterday. Their office is so much closer and I didn’t have to wait 4 hours to see the doctor, so it started out well! He was very clear speaking and made sure I understood. He listened to me and asked questions. At one point he asked if I had fibromyalgia. I told him that I thought I did and that I had asked the old doc about it, but that she never addressed it. After a bit more time he told me that he thought I had it also. Yay me!

My SED rates are pretty much always normal when I’m in a flare. Also I have responded really well to Cymbalta, which is for Fibro. Go figure! I just figured it was working for my Sjogren’s. No, it was working for my fibro! Well, learning this gives me other options for treatment. I’m slowly finding things that work and getting back to being a normal person!

He also thinks that my thyroid is messed up. It has always been enlarged and doctors have done the basic test, but it always came back fine. Lately it is showing a little abnormal so he decided to do a full panel on it. If that’s the case that is something else we can work with to make me more normal. So the question is do I have hypothyroidism or Hashimoto’s. ” For many Hashimoto’s patients, the thyroid becomes enlarged, a condition known as a goiter. The goiter can range from slight enlargement, which may have no other symptoms, to a substantial increase in size. ” “Hashimoto’s typically involves a slow but steady destruction of the gland that eventually results in the thyroid’s inability to produce sufficient thyroid hormone — the condition known as hypothyroidism.” I think it sounds more like the second one. I also did a symptoms test and it sounds about right. I guess I’ll find out on September 13 when I go to my next appointment!

I don’t necessarily like finding things wrong with me, but on the positive side I know there are things wrong with me and if we can find out what they are we can take measures to fix them. That’s what I’m all about. Finding a normal life!

World Sjogren’s Day

Today is World Sjogren’s Day! Please take the time to learn about Sjogren’s Syndrome. There is a chance that someone you know has it and has not been diagnosed with it. It takes an average of 7 years to be diagnosed. In the meantime you are going from doctor to doctor and eventually you start to think you may be a little crazy and the doctors are looking at you like you are! It’s frustrating when you can’t figure out what is wrong when you know something IS wrong!!!

Finding out that I had Sjogren’s was a relief at first. I finally knew that I wasn’t crazy! There was something wrong with me! Then my next thought was “Huh… I don’t think I’m supposed to be happy about this!” The good thing is that most of the symptoms can be treated. You just have to keep trying until you find the correct treatment for you. When it comes to Sjogren’s no one is ever the same. What is true for you may not be true for someone else. It takes much trial and error, but there is hope.

If you think you or someone you know might have Sjogren’s then please look into it further. It could change their life to finally know what is wrong with them and be able to start a treatment plan that will help them.

Check out Defy the Dry and the Sjogren’s Syndrome Foundation to learn more!

 

Hello world!

I am a mother of a 16 year old boy, 19 year old daughter, 8 cats and 11 fish. I am a  wife to a man who is willing to put up with me, I live life the best that I can and deal with what it dishes out in my own special way. I have Sjogren’s Syndrome and  depression (plus other crap), love to crochet and garden, spend as much time outdoors as possible, and a little bit of everything in between… I enjoy pretty much anything that is new but I’m far from being an expert on anything!

A few years ago my life changed yet again. I went through a divorce and married the man of my dreams. Funny thing is, it all started with a blog. Before my separation I started a blog about my life and concerns with my marriage. I blogged religiously. There wasn’t a day that went by without a new post or several. A few months after I started, my marriage did end. We separated and went our own ways. While blogging I met many wonderful people online. Many who I still talk to today and one that I married.

The first time I saw his blog I felt a strange connection to him. We were both going through similar things so I just wrote it off to that. We commented on each others blogs for a few years and that was it. One day I decided to add one of those chat things on my blog and he decided to chat with me. From there it led to the phone and eventually we met in person. By the time we met in person I already knew he was the one that I was meant to be with.

A few months later I moved to Florida. My son and I were going to live there until Stephan retired from the Air Force. I was supposed to be there a year and a half. I moved there on a Friday. I was excited to start the next phase of my life. It was great! We were three blocks from the beach and starting a new family.

Then Tuesday rolled around… my new husband to be came home with orders to go to Turkey for a year! I ended up living in Florida for three months and moving back to Georgia. We got married on November 25, 2009 and he left for Turkey on November 26, 2009. For the next year we were back to our internet relationship. Only this time instead of a state away we were half a world apart! His daughter moved in with her mom for the year that he was gone and my son and I lived in an apartment  in GA.

During that year my health problems were getting worse. I finally went to a Rhuematologist and after a few tests and what not I was diagnosed with Sjogren’s Syndrome. It can take many years to be diagnosed so I was pretty lucky that everything lined up just right. I’ve had symptoms for years, since my teens. I had never thought much of it. It was normal for me. At the time I would have flares, but they would only last for a few weeks or so. I mainly had stomach problems, fatigue, dry eyes, dry mouth, and brain fog. Things have changed a lot since then!

Before Stephan’s year was up in Turkey I got to go and visit for a few weeks. We made that time our honeymoon time! We had a great time. Turkey is beautiful. If you ever get the chance to go then go! There is so much to see. We also took a short trip over to Chios, Greece. We rented a motorcycle and rode around the island for a few days. It was amazing and just so free feeling. We didn’t make reservations we just went and stopped where and when we wanted to.

Stephan finally got to move back to the states and ended up in Alabama. He was four hours away this time. We decide that I would stay in GA since he would be there for less than a year. The time he would be there was also split between two school years. I decided to just stay here and keep my son in school here. His daughter wanted to move back in with him, so she moved from her mom’s to Stephan’s in AL. We all saw each other on the weekends during that time.

Again it was getting close for his retirement. He was figuring out the paperwork and what needed to be done. He was waiting for his Top Secret Clearance to be renewed and then he was going to drop his paperwork for retirement. Well… that didn’t happen. The Air Force with their super spy network found out and sabotaged our plans yet again! This time he got orders to go to Kosovo for six months. We had just bought a house in preparation for our family all being together. This time his daughter decided to live with me, since she would end up in this school in six months. She didn’t want to have to change schools yet again.

While Stephan was gone I lost my job. This gave me time to do a lot of the improvements on our house before he came home. This time before he came home he had all of his retirement in place. We weren’t going to take the chance of him being sent off again! He got back to the states in May 2010. He had a  little more than a month in AL before he could start his terminal leave. In July of 2010, a little more than 2 1/2 years after we got married, we FINALLY got to live together! For the first time in our married life we were living under the same roof!!!

He officially retired from the United States Air Force on September 1, 2010. Due to the job market it took a while for him to get a job. It was not easy during that time. Money was really tight. After nine months he found a job and has been there since.

At that time I was in pain most of the time and going to so many doctors that working, taking care of a house and a family seemed impossible. When I was working I couldn’t keep up. There were so many days that I came home and fell asleep and didn’t wake up until the morning. I didn’t have the energy to do it all. My memory was getting worse and there were many times that I could not remember how to do parts of my job.

My depression and anxiety was getting bad. I have clinical depression so I have been on medication most of my life. I started in my early twenties. I didn’t realize it how bad it was getting until it was too late. It tends to sneak up on you. I ended up in a mental hospital for a little bit but it really helped me turn around and get back on track.

After trying for a few years I was able to get Disability. Not working has made life easier. I still have issues but not as bad since I’m not pushing myself to do everything. Well, that’s the low down on the past few years, well eight years.

I will talk about my medical issues on this blog. It isn’t for sympathy it’s to let others that have the same or similar issues know that they are not alone and to educate those of you that just don’t have a clue as to what it is like for us. I’d also like to take a stab at educating those that think we are faking it and that it is all in our head. 🙂

I do my best to see the positive in everything no matter how bad it is. I use jokes to get through everything. I am not good when it comes to filters on my mouth or my hands so if you think you might be offended when I talk about the loony bin or any other crazy ass shit I say you might not want to visit here often. I can’t change what my life is. I can only try to make it better and not give up on the things that I love. This will pretty much be a blog of my learning experiences whether new or old. Come along for the ride or jump off while we are moving cause I’m not stopping!

Jen