Hi Donna

June 23, 2009 at 2:01 am

Hi Donna! Don’t get discouraged though! Keep pushing for getting treatment with this doctor. Hopefully he will find what is causing this and start treatment. I too get aggrivated by chemical smells and pesticides. I don’t use them in my yard or garden I let mother nature just take it’s course. I really love seeing my garden and flowers grow.

It make me see just how beautiful our world could be if we all wanted it that way. So I enjoy my yard and flowers and try to forget about the world around me. It takes me into a different place! And very relaxing!

I sure hope you finally get some answers with treatment. It’s not fun seeing your life in this state knowing you had health that was once okay and had a life! Take that part of life away and boy is that hard to cope with. It’s very frustrating to say the least. I will keep praying for you! Hopefully soon you will start seeing treatment and get better! Hugs
Linda H

Hi Donna

October 8, 2008 at 9:46 pm

Hi Donna! Nobody is trying to judge you dear! In fact most of us are trying to be helpful and trying to give you some very helpful advice. We see you asking something in here and we are only trying to help you out. Nobody in here is trying to judge you.
Maybe we just don’t understand what it is you are actually asking. We really don’t know much about you or what you are actually going through. We have no idea what kind of meds you are taking. We have no diagnoses of what you have!
You mentioned pain management and we are not sure what to say because you are the one getting all upset here! Calm down Donna! Lighten up a bit here! Take a deep breath and relax some. Your getting offensive with us all in here and we are just trying to be helpful.
In fact I have seen many of us respond to your posting and each of us have love and caring answers. We are trying to show you that we do care about you and really are trying to give you a chance in here!
And each of us do care about you! Maybe you should introduce yourself. Tell us something about you. When I first posted in here I introduced myself and I asked questions and everybody in here all has different opinions. We all have different personalities and a new person when they come in may feel offended at first but it’s because we are trying to get to know you but have never met you and we want to communicate with you but we just say what we think is best. But we are not judging you. There is no judgement at all!
You made a good step in here! You mentioned yard sales! Hey I love yard sales! I can’t wait to take a picture in here and let you see what I did with my finds. And how fun it is finding things!
What we need to do here is let you introduce yourself. Tell us a little bit about you. We heard you were in pain and we showed you we cared! And because we don’t know what you take, we might just be giving you a few tips to help you feel better. I hate pain! Not fun dealing with pain. Mine started back in 1988! Long time! ๐Ÿ˜€ Very long time! I have just learned a few things over the years with advice from others and I tried some of that advice and it helped! We want to help you hon! That’s all! We want to show we care but it’s very hard when you don’t know that person. I found a few great friends in here that we email alot to each other. We talk about politics, recipes and photos, and even their pet goats on their farm. We wish each other good mornings.
Donna! Just give it some time in here. You will find some good friends and they will listen and they will try to help you and they will chat with you! We are here for you dear! We are here! It’s a matter of just getting to know you and reading your postings and trying to understand them. Don’t get offended! Each person in here.. I have had a couple run in’s myself and we clashed with each other at first. But that person did not know me and didn’t understand me. I almost quit the forum. But I hung in there and we now communicate with each other and have no problems now!
You know what it is? There are a bunch of regulars in here that have known each other for a very long time. When a new person comes in they can feel rejected at first because the regulars have gotten to know each other and they are used to talking with each other and they never get offended. That’s because they know each other now! They say what they feel and when someone says they are in pain each person will tell what helps them in hopes that it helps you. The posting did sound offending but she and I too we are trying to help you, but each time somebody say’s something you get hurt and upset! In your last posting you went to Trey and had him close out your posting. So we are thinking that you got all angry and offended and then you come back and here we are trying to give you a chance but some may have gotten upset in here because of what you said in that posting. So we are kind of lost here! We are trying to give you a chance Donna! You just need to calm down and lets start over okay! What we are going to do now is start over! Your next posting, I would like to see you introduce yourself! Tells us something about you. Your meds, your symptoms and any questions. Tomorrow come back and repost a new posting and tell us about you.
Don’t get offended okay! If you see an offending post, just ignore it! You don’t have to answer to that posting! And just ignore it! Just want to let you know I have been on forums before and many of them shut down because of fighting on the internet with each other. Forcing a good site to close down loosing our support system. Donna! We all need help here! Many in here undiagnosed and very sick! Give it some time! Every forum you go to is always going to have one that you don’t like posting too. Ones you don’t like you just pass the posting and ignore them. I always give someone a chance. And I have a strike system! Strike 1 I let it go and keep trying. Strike 2 I still try to make the friendship work but I back off from that person. Strike 3… I ignore completely and will not answer that posting. I will do anything to make sure that this does not close. Too many wonderful people in here. Donna got into Ken’s site! I am going to re-introduse myself to you so you can meet me and then you will know a little about me! That way you get to see one of us in here. I am Linda H. But give it a chance! I bet in the next two weeks you will be in here an be a part of the team we have and forget this all happened! Just relax and ignore anything that offends you! If not you will go to another forum and find the same thing and will feel like the world dosen’t care! So stick with us okay! Hang in there! Hey! Giving you a big fat juicy sloppy kissie! ๐Ÿ˜€ Hugs Hugs

Hi Donna

October 8, 2008 at 8:11 pm

Hi Donna! You just met a yardsale junkie! Will have to post a few photo’s of my yard sale finds for my house is amost all yard sale stuff! I have alot of antique furniture that I found at yard sales.

Have you tried any inflammatory drugs? The drug you are taking is a pain killer but not a inflammatory drug! It helps for pain but does not take inflammation away. I have to take 600mgs Ibuprophen 3 times a day every single day to keep inflammation down.They started me out on this drug many years ago when I was not diagnosed yet but they knew I had something autoimmune and was in alot of pain.

Something that might help also is B-12 Vitamin. It’s very good for the nervous system. They have two kinds though. One goes into your bloodstream and one is absorbed through the stomach. Many folks that get nerve damage can get malabsortion problems due to the nervous system messing up. I take the One A Day Womens Multi Vitamin every single day but I started out taking two of them to replenish my body. I took two for 1 week and then now down to one a day. The B-12 you can buy Lingual or Sub Lingual.

The Sub Lingual is the best to take letting it melt under the tongue. It gets absorbed into the bloodstream instead of the stomach and works faster building your nervous system up. Your body can’t overdose on B-12 and actually they started me out on two a day the first month and then 1 a day afterwards. There is also some nerve pain cream that is over the counter and helps burning nerve pain. Different names for it but I have Zostriz-HP. Does help on those bad painful overdid it days!

Not really sure what kind of meds you are taking and if you are only taking the drug you mentioned it’s not really helpful inflammatory wise. Not trying to create a problem here just giving you some possible relief things that might help in easing the pain some just in case you are not taking anything else or seeing a doctor right now.

I have bought some really nice things at yard sales. I do alot of crafting too when I feel good. My arms are shot now though! But I used to do alot of crafts. I used to do alot of Sea Shell Art. Actually have sold alot of my arts on Ebay. But have not done it in a while because my arms are shot right now.

I have gone to auctions too! Those estate auctions are fun going to and bidding on things. I bought an old antique mirror and made a headboard out of it. Maybe tomorrow when I have time I will post some of my yard sale finds and let you see what I did with them!
Hope you feel better soon! That B-12 will help your nervous system alot. Try it out and you will see some difference after the first month taking them. Hugs
Linda H

Hi Donna!

October 5, 2008 at 2:32 am

Hi Donna! I have a small story to share with you and welcome you to the site! There was a good movie on tonight and I was dying to watch it and am staying up late watching it but typing this at the same time. I took a nap this afternoon and overslept! I lived in Philadelphia region for a while and that was in the late 80’s. I got very sick with simular symptoms. The headaches were horrible and you sound almost like me many years back. It could be GBS but then it could be a very treatable condition. I went for 5 years from doctor to doctor and was getting super peed off because nothing was getting done. I was a hard to diagnose case! I got bedridden and wheelchair bound and could barely walk. My head was pounding! Funny you mentioned the Flu Shot! I had the Hepatitis B Vaccine back then and a few days later I got just like you. 5 long years I suffered and cried and was miserable. I did not want to give up and kept fighting with the doctors. Even wrote down my day to day symptoms. I even asked my doctor if he saw any labs abnormal. I wanted to know what his opinion was. Be brave dear and start asking! This is your life here you are dealing with! To make a long story short I got diagnosed with Central Nervous System Lupus and almost died! By the time I finally got to see a good doctor that would listen to me, I was pretty severe. When I did get diagnosed I was put in the hospital and given pulse steroids and cytoxin. I too have asthma. I know your frustration and feeling. I’ve been there and a few others have been there to! I do agree about the Healthcare system. I moved to NC 6 years ago and gave up my wonderful doctors that saved my life and actually went into remission but had a long time of recovering. My town has some aweful doctors that are a joke. I started seeing new doctors here and got sick again. Went to see a lousy Neurologist and she diagnosed me with a B-12 A Pernoius Anemia. Symptoms of that can almost mimic Thyroid and Lupus. Then I got sick again but had a back injury and they found Lumbar Spinal Stenosis. 3 disk repaired. Then after that surgery I had a massive attack on my nervous system. Those two lousy doctors that I was seeing in my town ignored me! I mean totally ignored me! I was so sick and they told me to go to the ER. Went to ER and they told me to see Doctor! Mad was not the word for it! I ended up going to the next town beside me in North Carolina and found a better doctor that did listen to me. Thank god he did! Told him all my symptoms and the testing began. He referred me to a Neurologist and found CIDP. I got some records and noticed that a CT Scan had a nodule in my thyroid. So I asked this new doctor that is trying so hard to see what is going on and he decides after I mentioned it to do an Ultrasound. Called the next day and ordered RAIU Uptake Scan. They found thyroid cancer and had to remove the gland along with my tonsils and lymph nodes. The biopsy and labs right before my surgery came back showing Graves Disease. I too had developed a MultiNodular Goiter with 5 nodules and all were different sizes. Growing kind. One was 14mms. It was the dominant one and was cancer.
I care about you okay! I really do care! System or no system! You find another doctor even if it means you have to travel. Have you had the TPA or TSI Antibodies done recently? You may need RAI treatments or surgery on that thyroid. What I am trying to say is don’t fart around! By experience when a person gets sick and nothing gets done we get depressed and then we want to give up. And yes we do feel like nobody cares. And in realty you are right. Only the sick seem to be the ones that care the most because we have somewhat walked in each other’s shoes! I’m going to tell you straight out and I’m not trying to hurt your feelings. It’s because I do care! You get your fanny in to see your doctor and you ask questions and try to get answers out of him and demand a referral to see a neurologist. If he refuses, then you go into the next town. Tell him you want another doctor in another town. When we are sick and feel so bad… I’m referring to me and I’m pretty sure the rest in here agree with me. I go through spells of pity parties! I start to feel sorry for myself and will cry and get all blue but then I bounce out of it! You have to fight the system my friend. Argue with them and keep on an bug the living s… out of that doctor until he decides to refer you to someone. You look in his face and tell him you are seriously sick and will die if you don’t get some help. If he does nothing then you call your Healthcare System and tell them what is going on and you need a referral to get seen because of what happened. Tell them everything symptoms and all and tell them you need a new doctor! Hon! Your life may be in grave danger here! Treating this yourself may be the wrong thing. A Pernous Anemia is bad and can cause nerve damage and not treated can cause coma and death. Even strokes! CNS Lupus can cause coma and death if not treated. CNS Vasculitis can cause Coma and Death. You might even have Graves Disease or a Nodule now that could be cancer. Alot of auto-immune diseases out there and many of us can get attacks on our nervous system and not have GBS! Your body may be sick but you still have a mind. Take that mind and be a fighter! Don’t treat yourself. You could end up for a big let down later. You might be getting better but then again you may be getting worse and just don’t know it yet because the second attack has not hit you yet! I had several attacks on my nervous system with Lupus all requiring different treatments! When they first diagnosed me at University of PA Hospital. I had several MRI”s too. I had white matter lessions on the brain and they said I had at one time a Cerebral Infarct. There was a Plexus Cyst on the brain. I was in bad shape! If I can be a fighter! So can you! You don’t give up! Start making calls and if you have to fight you fight. This is your life here! You decide what you want to do with it! Some autoimmune disorders don’t always show up right away. I had normal labs for 5 years and had Lupus. Write down every nit picky symptom! Rash, itching skin whatever you see. Including mouth ulcers. Anything you see you write down and give to that doctor.Ask questions and at the same time you tell you want honesty and want to know his real true opinion. You want to know what I have been doing all these years. Everytime I am in the ER or doctors office. I go back a week later and get my records. I’ll ask for my recent records. Then I come home and get online and look up all the abnormal readings. This gives me an idea how to approach my doctor on the next visit! He knows I have the knowledge medically on many things and can’t outsmart me! I hope this letter didn’t offend you. I’m only trying to help you in somehow getting a diagnoses. I wish you my best! Good luck on your hard journey that you are going through right now. Been there and know how you feel! Cheer up now! Because tomorrow you are going to be a fighter! Hugs hugs and more hugs heading your way!