Re: Reiter's and Vascular Disease???

April 19, 2008

I can't say that I know their is a connection between Reiters and neuropathy but

I have both. Doctors are not treating the neuropathy; but I do wear support

stockings and am supposed to wear them all the time. I knew I had vascular

problems as a young mother. My legs would turn a pitted blue when I stood to

dress, felt like tiny bee stings. Good luck, hope you let all of us know if you

find answers.

Jane

---------------------------------

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

April 19, 2008

-I also have neuropathy in the hands and feet.I had tests done a few

months ago.The doc said it is most likely caused by the Reiter's.They

are not talking treatment,so I'm waiting for all the test everyone is

doing,to get back to my primary care doc to see if he is going to do

anything. I also want to thank everyone for their support with my

diagnosis merrygoround. It is a crazy life, but I'm still breathing.And

I do know I am not alone,thank God, and all you survivors out

there.Doc's need more studies in the spondy relm for darn sure.I I took

a really warm bath the other night to soak the pain in my back,and my

feet felt like they were freezing cold,and I began shivering and had to

cut the bath short. I wonder if I can walk on hot coals now?.LOL!!!

D. in OR

-- In , " joeyjoey1231232002 "

<joeyjoey1231232002@...> wrote:

>

> Does any one know if there is a connection between Reiter's and

> vascular diseases (i.e. numb hands / feet). Does it effect blood

> circulation? How? Treatment? Thank you.

>

April 22, 2008

I don't know much about vascular diseases in general, but I was diagnosed many

years ago with Raynaud's disease, which can cause numbness, discoloration, and

temperature sensitivity in the hands and feet. It seems to be common with

people with other types of autoimmune diseases such as Sjogren's syndrome,

lupus, and rheumatoid arthritis.

joeyjoey1231232002 <joeyjoey1231232002@...> wrote:

Does any one know if there is a connection between Reiter's and

vascular diseases (i.e. numb hands / feet). Does it effect blood

circulation? How? Treatment? Thank you.

---------------------------------

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

April 22, 2008

Hi

I think you will find that any disease that affects the immune system, such as

Reiter's, have many similarities with other autoimmune diseases. But don't get

into the " hey I have that symptom, maybe I have XXXX "

It is not going to help you one bit when it comes to doctors. I know what

worked for me was an extensive log of medications and anything out of the norm

for me. Pain levels, severe restrictions in the way we move about using our

arms, legs, etc. The big one though is pain levels. You almost have to pound

it into the doctor's head that " hey, I am in severe pain every minute of every

day and I am sorry, taking 2 aspirins is out of the question. "

I must apologise for not being around for a couple or so days. Seems I was in

hypoglycemia heaven on Monday and really do not remember much about it up until

noon today which I thought was Wednesday. The pups woke me up in the wee hours

of Monday morning, both of them licking my face and Brutus pulling on one of my

ear lobes. So I got up and decided to take a blood sugar reading, which I do

sometimes in the early hours of a day. Up popped 2.3 mmol/l well below the Hypo

mark of 3.9. So ate some sugar cubes and honey sandwiches and went back to

sleep after my blood sugar reading was above the normal range. But it was a

restless night and no doubt had the dogs not awakened me, I would still be

asleep. Anyway, I went back to bed and got up again at 7 AM in some major pain.

I took my blood sugar and it was 11.7, safe enough to take my NPH long acting

insulin shot for the morning. Had breakfast then took my morning medication and

went back into the bed with my heat pad over my SI Spine. Being exhausted I

fell asleep and woke up feeling a little woozy about 11 PM, in time for lunch.

Took my blood sugar reading and it was 2.1 mmol per l. I was totally out of it

and was trying to grab what sugar I could and down it as quickly as possible, 10

cubes of sugar and 6 honey sandwhiches later I got my reading up to 4.7 But I

was a bit late as I went into Lactic Acidosis and that is not nice at all.

Finally got some sleep last night, or I should say after 3 AM this morning when

I realized I had missed all my medication for the last day and a half. Not good

at all.

I just wish the pain would disappear, which it hasn't and the heating pad and I

are having a personal relationship methinks.

Just airing my brain

Fr. Dave

---

avast! Antivirus: Outbound message clean.

Virus Database (VPS): 080422-1, 22/04/2008

Tested on: 22/04/2008 7:30:16 PM

http://www.avast.com

April 22, 2008

Sometimes the similarities is all the doctors can find. I simply don't 'fit'

any garden variety case. I've had arthritis since I was 6 and the docs still

can't figure out if I have juvenile rheumatoid pauciarticular arthritis or

juvenile onset spondyloarthropathy (I am unlucky enough to be both HLA-B27 and

ANA positive). My question is, " Who cares??? " My symptoms haven't changed in

nearly thirty years (just has added a few more joints to the picture) but they

keep trying to find a category that 'fits'. My problem is my arthritis so MILD

it's hard to explain to doctors I don't NEED any medications or pain killers, I

can manage just fine without them, but based on reading everyone's posts on

here, I appear to be in a very small minority. Sometimes I get tired of doctors

trying to classify everything or put things in neat little categories... these

autoimmune diseases and symptoms don't always 'fit' any category. Also,

regardless of the category they stick you in,

oftentimes the treatment is the same. Or they just add more poisons that cause

more headaches (they put me on Azulfadine which I took for four years only to

come down with a nasty allergic reaction that would've killed me if I took the

advice of the ER doctor instead of using my own judgement and figuring out for

myself that I had every symptom in the book for a classic sulfa allergy). Now I

don't take any medications for the arthritis and just make sure I see the eye

specialists regularly (rheumatologists are also usually shocked at how many eye

surgeries I've had but that's another story). In a nutshell, sometimes you have

to do your own research and make your own judgements on what's best for your

body even if that means ignoring the advice of the 'specialists' who really know

a lot less then they say they do.

Hi

I think you will find that any disease that affects the immune system, such as

Reiter's, have many similarities with other autoimmune diseases. But don't get

into the " hey I have that symptom, maybe I have XXXX "

It is not going to help you one bit when it comes to doctors. I know what worked

for me was an extensive log of medications and anything out of the norm for me.

Pain levels, severe restrictions in the way we move about using our arms, legs,

etc.

---------------------------------

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

April 23, 2008

Adhikari <cakeller25@...> wrote:

>

> Sometimes the similarities is all the doctors can find.

Wow! Well said! I agree 100% with your comment: " sometimes you have

to do your own research and make your own judgements on what's best

for your body even if that means ignoring the advice of

the 'specialists' who really know a lot less then they say they do. "

While I've only had this for probably a year now, with full blown

symptoms for 8-9 months, I'm still in search for capable physician

and hopefully closing in.

While I can understand your frustration with doctors trying to put

people into categories, I have to disagree as I know I am better

having a category than not having anything at all. It's taken me

months to get a category....lol...and I'm thrilled to now understand

at least a little bit more of what I have and what to expect. For all

I knew, my joints were going to eventually get worse until I was

wheelchair, bed ridden, or worse. I suppose that could still happen,

but I have a much more positive outlook knowing what " IT " is. I

suspect I have more than just Reiter's (a syndrome I'm thankful to

have because my mind envisioned much worse to tell you the truth) but

for now am happy to have the title. (at least for awhile. Ask me in

30 years though and I doubt I will be)

I wish you good health and a pain free day!

April 23, 2008

Brand New Day 13:

Do you know what your trigger was????

Are you on any meds???

Thanks.

________________________________________________________________________________\

____

Be a better friend, newshound, and

know-it-all with Mobile. Try it now.

http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

April 24, 2008

Hi !

I am not 100% sure, but my guess is that I got salmonella from the

peanut butter recall last year. Either that or some sort of

gastrointestinal virus. My husband is a doctor while I don't mean

anything " bad " towards him, he is one of those people who

believes " Dear, it's just a virus " . He is not easy to hand out

antibiotics as he has strong beliefs about mutating bacteria and how

the doctors of the 70's and 80's dished them out too frequently,

blah, blah, blah. Also, because he is a doctor, I don't go to " the

doctor " like a normal person would. I probably should have as then I

would know what I had to trigger it. I've done the thousands of

dollars worth of blood tests (I'm thinking I've had over 30 vials of

blood drawn to date) and everything....EVERYTHING comes back

negative. Even though one doesnt want to " have " something, it sure

would ease my mind (as I'm an information junkie) to know what and

why this has happened. As I stated above, at this point I'm thankful

to know what " it " is and that I'm not crazy.

I wrote my " story " in a letter for my new doctor and I'm thinking

about posting it on here. Even though my history is only over the

past year, it's still 5 pages and kind of winded. Let me work on that

today.

Oh, you asked if I'm on medication? Yes, I went off for about 3

weeks, but now am back on Indomethicin. I would like to be on

a " better " drug but I have to wait another MONTH to see the doctor.

I had an appointment earlier in the month but he only booked 15

minutes for my appointment (idiot) and then after driving 2.5 hours,

I got there and he said he " didnt have time to see me because I'm not

an average " run of the mill " patient. A bunch of BS if you ask me,

but I'm going to try him one more time. My husband actually voiced a

complaint about this man, so they have a heads up if he behaves this

way again. I left in tears as I had been waiting about 6 weeks for

that appointment. Now, I wait again until May 8. It sucks to live

your life waiting for doctors appointments. I'm sure you all know

that though.

Ok, I'm gonna go work on my story. It's in a funky Word format that

I can't get to load on this computer.

Genie

April 24, 2008

Genie:

I thought I was the only person getting on planes to meet with doctors. I live

in NYC and have flown to Tampa, land, Boston and to meet w/ " specialists " .

I have also met with every ID and Rheumie in NYC. I too used to wait

and " count down " the days to meet with these prominent doctors. The most

disappointing were down at Hopkins. On two different visit (mind you I live in

NY), I meet w/ the head of Infectious Disease. I was told it was all in my

head -- anxiety! The head of Rheumatology also said it was nothing. I

remember counting the days to see these " best " doctors at the " best " rated

hospital in the world. Very disappointing.

I've had 100s of blood tests done. I can't tell you how many times I've been

tested for things like Chlamydia, Lyme, Gonorrhea, etc. I've had synovial

fluids tests(knee)... lips biopsy (salivary glands to rule out Sjogren's

Syndrome)...MRIs....X-Rays....you name it. The best was the " Full Body Bone

Scan " . Still no answers.

I would pay thousands for some to simply tell me what I have / what's wrong. I

would not even ask about a cure. Just tell me what I have.

I am now working w/ two doctors. One is a Rhuemie from NY HSS and the other is

an ID doctor (private practice) who is an expert in EBV / CFS. She's the one

who put me on Valtrex. The other doctor believes treating Reiter's Syndrome

w/ antibiotics (low dose / long term). However, I was on dual antibiotics for

one year (doxy and rifampin) w/o any success. So, I have passed up on taking

more antibiotics for now.

As far my trigger... I'm not sure either. My wife and I both came down w/

Helicobacter Pylori infections around the same time. I developed symptoms

after this. If it weren't for my two kids.....I'd file for disability and stay

home in a dark room all day. But, get this... I'm an investment banker and

have to pitch clients all day here in NY and across the country.

Lots of pain. Speaking of pain I take Ultram / Tramadol for pain. Usually in