Desperately need advice and help!

[Guest guest]

As some of you already know my name is Holly. I am 26 have SLE, RA,

Fibromyalgia, Chronic Fatigue disorder, and my latest addition

peripheral neuropathy. My problem is this... Before I got my

diagnosis I spent a good 2 years of my life with various neurologists

telling me that they thought that I was in the early stages of

multiple sclerosis. I was treated for multiple sclerosis for 2

years before my neurologist said that nothing was showing up on the

mri of my brain ( however I did have something show up on the mri Of

my upper spine). My neurologist finally said that I had a chemical

imbalance and sent me on my way, that was a couple months before my

diagnosis or ra and the afterwards SLE. At the same time my primary

told me I had no medical reason to be having problems. Turns out I

was going into kidney failure when I was diagnosed with SLE. Now I am

on medication--a lot--and am having more problems than ever. I am

having numbness in my legs so bad that I am falling down and numbness

in my left arm along with shortness of breath and severe headaches (

they aren't migranes as I have had those since I was very young and

know when one is coming on). I don't have a primary physician at this

time because my last primary told me I was crazy. I started having

these symptoms a couple of years ago although they would come and go

every few months. I am now having them on a monthly basis even as I

am typing this. I haven't told my rheumy because I am currently on

short term disability and am also buying my first house and am afraid

to rack up more bills. I feel scared and alone and am afraid to tell

my husband because I put him through so much trying to get a

diagnosis. I don't know what to do. Before I was so passionate to

prove that I wasn't crazy. But now, I want to just ignore my symptoms

and pretend I am getting better. I am so depressed and angry.

Everyone tells me that I am too young to be sick, be I fear I am

getting worse. Could my symptoms just be from my peripheral

neuropathy. I usually only have pain and numbness in my upper spine

at the base of the neck. I am soooo scared and don't want to do this

anymore. How can I be so young and so sick? I know that multiple

sclerosis is an autoimmune disease, but can it come on even if you

already have others? I need suggestions and support. What to do? I

am so tired, scared and alone. I want to just keep quite this time.

I don't want to jeapordize getting the house. I can't afford another

hospital stay on;y to be told nothings wrong. Any suggestions?

Best wishes Holly---Sorry my post is sooo long!!

[Guest guest]

Holly,

I'm sorry you're having such disturbing symptoms and that you are so worried

about everything.

Please confide in your husband. Tell him what you told us here. Then call

your rheumatologist and describe your symptoms and tell her about your

financial situation. This is too much to keep to yourself. Your doctor needs

to know that your legs are giving out on you, about the numbness, and about

the severe headaches.

Lupus can affect the nervous system and can produce such symptoms. So can

MS. Having both lupus and RA is unusual. Concurrent MS, lupus, and RA would

be very rare.

What meds are you on right now? When will you be in the new house?

Lupus Foundation of America

" Systemic lupus and the nervous system " :

http://www.lupus.org/education/brochures/systemic.html

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Desperately need advice and help!

> As some of you already know my name is Holly. I am 26 have SLE, RA,

> Fibromyalgia, Chronic Fatigue disorder, and my latest addition

> peripheral neuropathy. My problem is this... Before I got my

> diagnosis I spent a good 2 years of my life with various neurologists

> telling me that they thought that I was in the early stages of

> multiple sclerosis. I was treated for multiple sclerosis for 2

> years before my neurologist said that nothing was showing up on the

> mri of my brain ( however I did have something show up on the mri Of

> my upper spine). My neurologist finally said that I had a chemical

> imbalance and sent me on my way, that was a couple months before my

> diagnosis or ra and the afterwards SLE. At the same time my primary

> told me I had no medical reason to be having problems. Turns out I

> was going into kidney failure when I was diagnosed with SLE. Now I am

> on medication--a lot--and am having more problems than ever. I am

> having numbness in my legs so bad that I am falling down and numbness

> in my left arm along with shortness of breath and severe headaches (

> they aren't migranes as I have had those since I was very young and

> know when one is coming on). I don't have a primary physician at this

> time because my last primary told me I was crazy. I started having

> these symptoms a couple of years ago although they would come and go

> every few months. I am now having them on a monthly basis even as I

> am typing this. I haven't told my rheumy because I am currently on

> short term disability and am also buying my first house and am afraid

> to rack up more bills. I feel scared and alone and am afraid to tell

> my husband because I put him through so much trying to get a

> diagnosis. I don't know what to do. Before I was so passionate to

> prove that I wasn't crazy. But now, I want to just ignore my symptoms

> and pretend I am getting better. I am so depressed and angry.

> Everyone tells me that I am too young to be sick, be I fear I am

> getting worse. Could my symptoms just be from my peripheral

> neuropathy. I usually only have pain and numbness in my upper spine

> at the base of the neck. I am soooo scared and don't want to do this

> anymore. How can I be so young and so sick? I know that multiple

> sclerosis is an autoimmune disease, but can it come on even if you

> already have others? I need suggestions and support. What to do? I

> am so tired, scared and alone. I want to just keep quite this time.

> I don't want to jeapordize getting the house. I can't afford another

> hospital stay on;y to be told nothings wrong. Any suggestions?

> Best wishes Holly---Sorry my post is sooo long!!