[MarshaHostetler]

Hello,
My name is Marsha I feel I have been fighting Lupus all my life but did not know it. I was in remission for 1 1/2 years but in September 2008 lupus started saying I had enough down time. Right now I am on a search for a doctor with a brain that knows the 11 criteria of lupus the one I just saw thought one blood test would tell me if I have lupus and did not look at my history at all. I came with my life history typed out I had years not doctors or dates and as close as I could to years I am 50 this started since I was 9 (well that is when I could remember and the person that could help me my mom is gone). Out of the 11 I have had 5 she diagnosed me with Fibro which I may have but with bleeding gums, low white blood count and migraines that cause me to vomite and not move off of my bed I am on medication 24/7 and heavy medication when I still get the migraines which I do 3-4 times a week. I worry about brain scaring which I know can happen.
I have an appointment in March with an RA doctor I was recommended by someone I trust so we will see. I have started studying everything I can get my hands on blood test and everything so I will know what I am looking at. I understand it could take years to diagnose I understand that but I need a doctor that knows why my chest feels like a horse has kicked me in it or why I can not take a full breath like there is a band around my lung.
Thank you for letting me get this all out.

 

[KarolH]

Hi Marsha and welcome to a great place.

I think your appointment in March will help provide some answers and of course treatment to follow.

Have you tested positive for anything in the past? Do you already have any diagnosed auto immune issues? The tightness in your chest sounds similar to pleuritis (spelling???) which they say can be painful.

I wish you luck moving forward and come join us in the chat room sometime.

Hope to get to know you better.:wink2:

 

[Gerri54]

Hi Marsha, Gerri here - I see you have met Karol, another dear friend of mine. We met on a MS board and our journey has lead us here. Karol always seems to be one step ahead of me. I am still waiting for answers. (Hugs Karol)

Marsha, you will meet a lot of nice people here. There is lot of information, which will help you with questions to ask your doctor.

Hugs

Gerri

PS. Should tell others about the pillow beds you make for puppies and your little service dog. They are so cute

 

[LolaLola]

Hello Marsha, Sometimes a diagnosis needs a bit of time to wait and see. As you have learned many of us have had the wrong Docs. and had a lot of time suffering unneccessarily. Just to reassure you, when I finally got to the right Consultant diagnosis was almost immediate and I was started on treatment straight away. With the right Docs. there is no rreason you should have to wait years. I don't know if you are in the UK or US but I am sure people here will be able to help you locate a Consultant if you need one. As you say, History taking is a vital part of diagnosis. Be very wary of any Doc. who is dismissive of it.
x Lola
PS Also just a gentle warning, there is a lot of outdated, gloomy info. about Lupus on the Internet and in old books.
Be careful what you read, anything over about 5 years old may be outdated. Treatment has improved a lot, there is no need to scare yourself. Having said that, you sound sensible enough anyway,
Welcome here.

 

[MarshaHostetler]

Hi KaronH
Yes I have had endometriosis, Hashimoto's disease, RA (the doctor now says now but RA doctor then said yes) I was thought to have MS at one time. Right now I have a low white count my father has RA, my aunt has Lupus and so did my grandmother who had RA.
I really wish there was a list complied some place that had all the good doctors for us but not yet huh!

 

[MarshaHostetler]

Hi LolaLola,
I do know and I am learning about what the blood test mean as well as the results I think I scared the last doctor with what I knew and she did not. I thank you all for the warm welcome.

 

[Pink Pearl]

Hi Marsha,
You don't list where you are from. There is another thread farther down which does help to find a doctor in your area. Also, if you are in the US, the LFA chapters often have names of doctors in your area.

Welcome, and I know how hard it is to get a doctor who is willing to listen and deal with what has gone on and is now going on. I have a family history of lupus also. I also showed my first symptoms when I was 5 but not dx til I was 35. So, for those years inbetween there was a lot of medical mismanagement.

How I found the rheumy I am with now, was to divide a piece of paper into two columns. On one side I wrote down what I need from a doctor and the other, what I bring to a doctor. Then, I called the rheumy and went thru both sides. Then asked if he thought we could work as a team together. That was about 16 years ago, and we are still together. It is so important to have a good team relationship with your doctors.

The moderators here on this board are impressive in their knowledge, and experience dealing with lupus themselves. You will also find many of us have dealt with a lot of things thru time, and can give personal experience on how to survive with lupus.

Take care, and good luck,
Sally

 

[onetay]

Marsha,
I want first to give you a very warm welcome to the site. It seems you have been trying to handle this for a long time, and for that I am very sorry. I want to remind you this is only my thoughts: I would try a palmanary ( not sure spelled right ) specialist as it seems to be your lungs and chest that is bothering you the most at the moment. It would help us to know the country and location where you are, there might be people on here in your area that see a very good rhuemy. If you have went throw the rhuemies, I would say try a dermy. Many on here mine not agree, however that is the person that found mine. It is also helpful to know if the rhuemies you have been seeing know anything about lupus. Some of them are better than others. In the meantime again welcome and I hope you feel better soon.

 

[mother of pearl]

Marsha

Hi Marsha, I also had pulursey my chest hurt so bad i had to go to hospital they put me on predison and it worked I still have pain when I cough or snezze.I go to a pulmanologist he says i have scare tissue on my lungs. I also make funny noises it my diaphram pressing aganist my lungs. My father had lupus to. Lori

 

[MarshaHostetler]

Hi Pink Pearl,
I can not thank you enough for all of your warm welcomes here. I think I found a RA doctor I went to my blood doctor (cancer doctor my neurologist sent me to when my gums were bleeding, bruising and I started bleeding from a paper cut that took 15 minutes to stop I do not bleed usually even during surgeries) what can I say. She is great though and I do have cancer in my family my mother died at 56 (I am fifty) my father had prostrate cancer and just had his third skin cancer removed.
My blood work came back good I told about the negative results from the one doctor she said with lupus that happens you have to keep taking blood and go my the symptoms plus get a good doctor I told her my allergist (another doctor I love) gave me a name she has me who she recommended I told her she loves him so we will see I have an appointment for March.
My symptoms are starting to get worse like last time it scares me within two years I was using a cane and wheel chair. My heart right now is beating strange at times my joints are hurting and my neck is killing me I knew last night today was going to be challenging.
Thank you all for listening!

 

[MarshaHostetler]

Hi Gerri,
I do not know if it is against the rules tt mention my beds. I want to thank you for telling me about this site this is the best place and I have been getting the best support here. I live in St. Louis Missouri well about 45 minute out of St. Louis because I do not like when you can not see the stars! lol
Thank you Gerri
Hugs

 

[Gerri54]

Hi Marsha,

They are so much more open to hear about things in your life, you will see that once you are on the inside. Hopefully soon. If the moderators are reading this, I recommended Marsha to this site. I told her she will get all her questions here, and that everyone is so nice.

My son is in Missouri somewhere, and has been there for last two days, he is a AZ driver. He is hoping for a load shortly to bring him back to Canada.

Sorry about the cancer scare. Hoping the pain in your neck subsides. I know how it feels. Mine not too bad this last week, it just knocks a lot. The only pain just above my neck is in my brain at tip of spine this scare me.

Hugs

Gerri

 

[MarshaHostetler]

Hi Gerri,
My heart is beating strange at times today, my joints are aching, neck is hurting and I am just not feeling good. Yesterday my blood pressure was 130/88 pulse was 63 which is high for me this morning it was 88/73 and my pulse was 96 my blood pressure has been going up and down lately. I posted a question in symptoms today. I just do not know what to expect next.
Hugs

 

[Gerri54]

Marsha, your top number seems low. I don't know what that means. Hopefully someone here can answer you. Maybe you can call your family doctor, and see what they thinks.

Please get back to me.

Hugs

Gerri

 

[MarshaHostetler]

I told her when I was into she her she thought I was nervous I told her no it is like doctors do not think I know my body. It is like my body has not stablized for some reason it is up and down I guess lupus is just doing a number on me lately.
How are you feeling today Gerri?
Hugs

 

[Gerri54]

Hi Marsha, I will send you an email.

Hugs

Gerri

 

[Joandublin]

Hi Marsha

Of course its okay to talk about things of interest to us like hobbies, pets, etc. We have a Forum called 'Off Topic and Members News' just for that purpose. Then there is the Forum 'Just for Fun' where often members will post jokes or funny stories and birthday messages

We do try and keep things in 'order' here so if someone posted something that we deem to be in the wrong Forum, then we simply move it to a more appropriate forum. This helps members when using the search function for a particular topic.

I dont know if the pillows you make are actually a business venture but, if so, we dont allow advertising or business links on the forums. That part is up to Joanne the site owner

I will go and have a look at your BP question now.

Luv n stuff
Joan:rose:

 

[Gerri54]

Joan

Joan,

Marsha pillows were started for her service dog, and Marsha has not in away tried to sell them.

I was so nosey, I just followed her web link. I miss my puppy so much, I had to give her up because I moved into an apartment. She saved my life.

I wanted to see what type of puppy she had as a service dog. I am still trying to get a service dog, but they won't allow me to have one for my Severe auditory Processing disorder, because they say I am not deaf (low normal hearing). I wish I was, I hate how I feel when people talk to me, and treat me because I just don't understand them.

Hugs

Gerri

 

[MarshaHostetler]

Thank you Joan,
Toby my service dog is a chihuahua he alerts me to my migraines and when my B12 falls now we know it is lupus he is always watching me lately I have been so sick. It is a business since I lost my main income. The funny part Toby guided me to that too! I may have lupus but I am blessed with good friends, a great service dog and days when the pain is not as bad.
Thank you and I did not come here to sell my beds just to find help with my lupus and friends that understand what I am going through.
Thank you
Hugs

 

[MarshaHostetler]

New doctor packet

I just got the new patient packet from my new RA doctor it said not eat 4 hours before the appointment and to allow 2 hours for the appointment I had heard this guy was thorough. I think this is a good sign I just wanted to share this with all of you.