Re: Re: Hi recently diagnosed - from Ky

[Guest guest]

Hi Kathi,

Was out of town a few days for the change in scenery, but am back now. My RA doc

ordered 15 different tests with positive results for RF (20x normal levels) and

antibody counts 10x normal. They took over a pint of blood for the tests...took

forever and made me sick. I had gone to a neuro at age 16 (am 43 now), and was

told after a cat scan/mri , that I had connective tissue disease, but the

medication gave me excruciating headaches and I stopped taking it. So I when

untreated for all those years and then just had so many symptoms all at once,

starting last year, that I had to stop working last November. Have not been able

to regain strength or stamina to return to any kind of job. I have applied for

ssi/and social security, but was denied last week ssi because of my husband's

income. Just received paperwork to fill out for additional information on my

social security disability claim. I took my second chemo (MTX) treatment this

past Tuesday. Messed up my monthly cycles plus I'm in perimenopause and the

steroids are messing with that too. I have already picked out a wig and will buy

it soon, so I don't have to look at my baby fine hair continuing to fall out by

the roots. I have regained part of my taste back. I have been eatting raw lemons

and it is stimulating them to come back. Strange but it works...

Talk at cha...

[ ] Re: Hi recently diagnosed - from Ky

Welcome :I also have a scleroderma diagnose. I was quite

interested in your post, I started off with a daignosis of MS, as a

MRI of the brain showed lesions that they thought was MS or could be

a vascular disease. It took a good neuro to say NO WAY it is not MS.

But scleroderma does attack anywhere it wants....so did your taste

bud problem start with the MTX or did you have problems before? I

took MTX and had a constant feeling of a raw sore mouth, but never

lost taste, but meds effect all of us differently. I was also

wondering how the diagnosis of RA was made without joint

involvement? Did you have blood test with a positive RF? When I was

first diagnosed they said SD and lupus and SD does quite commonly

show mixed symptoms and testing. I have DDD at all levels of my

spine and oesteophyte formations at several places. At first my PCP

and rheumy felt it was a seperate issue, but with much urging from

another member of this group I went to " THE BEST " at s Hopkins

and they felt that the spine is connective tissue so it was not a

seperate issue. Do you have much skin involvement? I am sorry you

recieved this diagnosis and I would say educate yourself as much as

possible for the ride you are going to take, there is no cure for SD

and really no proven treatment....they treat each symptom as it

hits.....and suddenly you find yourself on more meds than you would

believe and you wonder will the drugs kill me before the disease

ever does. I started enbrel 2 years ago and take 3 shots a week, at

the time it was not a popular thought or med for SD patients, but

now there is proof it does work for some of us.....I have even had

regression in my skin problems. Looking forward to hearing more from

and about you, and if you have any questions or just need to rant

about the unfairness of this disease feel free to contact me

anytime....Kathi in OK

> Hello,

>

> My name is . I was recently diagnosed with rheumatoid and

scleroderma.

> Just had my first chemo (methotrexate treatment) this week. Have

lost

> probably 90% of my taste and cannot feel any hot foods in my

mouth. Has

> anyone else had this happen? The only thing I can taste real good

is raw

> lemon. I am trying to restart the taste buds. Is there anything

else I can

> do? I am on pharmaceutical grade vitamins and keeping up the

calcium, folic

> acid and the like. How long has anyone else been on methotrexate

before

> going to the shots twice a week? What other symptoms have y'all

had and when

> did your hair fall out? I am also on steriods twice a day. My

muscles

> paralyze off the steriods. Mine is in the muscles...bypassed the

joints

> already....intermediate stage....

>

> Any imput and chatting is wanted and needed. I'm

depressed....rachel

>

> _________________________________________________________________

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