what ??do you ask/new/long

[Guest guest]

Hello all,

First off a warning, looong email ahead

I am new here, and you have probably had all these questions before. But here I

go anyway. Just knowing I can type what I want without needing to be " strong "

and let it all hang out, it is?a great feeling!

So short story, I am off to a my second try at at a rheumatologist in a couple

of weeks. The first one did not work out, let's just say if I have to deal with

someone for the rest of my life, I want someone who will actually maybe sit and

answer my ??? instead of standing in the door way...

Anyway, so my ?? for you, what questions or information do you recommend taking

with you when you go to the Dr. for the first time. I plan on bringing a list of

my symptoms and wacky illnesses with me whether they are a?traditional symptoms

or not. I figure it is better to have more than not enough.

But is there anything you have in your mind, that you think, I wish I would have

known to ask that then?

Thanks so much in advance!

Ok now the long story.

I am 36 yoMF with 4 kids ages 14-3. I have always had odd things, Bells Palsy at

12, Shingles at 13, mono at 17(ok that's not odd), MVP at 19. The MVP they

believe is related to the mono, and oddly that is also when I started noticed my

joints hurting.

Back in the day I only had pain after drinking way to much. I remember asking my

friends if their joints hurt after drinking, hmmm no.

I don't really remember if I had pain to much during my pregnancy's, but

breastfeeding at times was very painful, more that any other time. If it were a

flare, then it literally only happened while I was nursing. Again I remember

asking my friend who was a LaLeche League leader if anyone else ever mentioned

their joints hurting while breastfeeding. hmmmm no.

I have had flare ups more and more often through the years, when mentioned to

various doctors (ob, primary care) they would do blood work for lupus since I

have some other symptoms that are related to that, but always came up negative

and I and they never pursued any further.

Recently (within the last couple years) I have decided that I had to figure out

what is going on. When my 2nd joint on ,my pointer finger swelled to the point

that I could not bend it, I took the dive and saw a rheumatologist. As I said

before, ick. I have always had really great O.B's and PC doctors that this one

just ...ugh.

Anyway one look at my hand and he said PA.

The swelling went away after?a?week of straight aleve, but that joint and the

next to it is always tender and hard to bend all the way. They feel like when I

try to bend them, there is a rope that is to tight and just can't go any

further.

I do not have psoriasis, though I have developed 2 quarter size patches on my

fingers within the last month that I now suspect could be psoriasis.

I have just been putting carmex in a tube on then when they are very itchy and

painful. They feel better immediately. But the other day I looked closely at

them and realized they were a bit scaly. So maybe this is psoriasis and it is

just now coming on.

My joint pain during a flare is all joints and both sides (elbows, wrist, all

hand & fingers, knees, ankles, all foot and toes). It is worse at night,

especially when I am lacking sleep, too much caffeine, near my period.

Thankfully alieve works pretty well. I try not to take it all the time though. I

kinda feel that I will eventually come to tolerate any drug and then will have

to be placed on something stronger. If I can hold off as long as I can the

better. Who knows if this thinking will work out, but that is where I am at.

So a few more questions, if my finger was the traditional " sausage " and was

unable to bend, do those who have that constantly unable to bend their fingers

all the time? Does the " sausage " go is spurts?

I always wonder what the doctor would have given me as a diagnosis if I didn't

present with the one swollen finger, as nothing else at the time seemed to

present as PA. Obviously there must have been other things, that I just don't

know about.

Ok I have borrowed your eyes long enough.

Thanks for reading, thanks for responding, in general thanks for understanding

[Guest guest]

- I'll only address a couple of things and leave the rest for

others.

It is possible to have the joint pain long before the skin symptoms.

I did, for many years. Nobody could tell me what was really wrong

with me until the P showed up - then all of sudden everything made

sense. The patches on your fingers might definitely be P showing

up. You should show them to the new rheumy or see a dermatologist.

You're lucky the rheumy saw the sausage digit, otherwise it could

have taken a lot longer to get the diagnosis!

Finally, your plan of subsisting on over-the-counter NSAIDs for as

long as possible is NOT (in my opinion) a good one. However, I do

understand and I'm pretty sure within my first couple of posts here I

said exactly the same thing. What I didn't know then (and you

probably don't realize either) is that PA can cause irreversible

damage unless treated with one of the DMARDs (disease-modifying anti-

rheumatic drugs) such as methotrexate, Humira, Enbrel, or Remicade.

These DMARD drugs actually slow or stop the progression of PA. The

NSAIDs only help with inflammation (and therefore pain) and will not

prevent permanent damage to your bones and joints. Unfortunately,

once the damage is done, you can't fix it. best regards, sherry z

[Guest guest]

Hi ,

Well, I second what Sherry said. Toughing it out with NSAIDs is not

a very good idea. Joint damage is not good. Oh yes, you can have

knees,hips, etc replaced, but that doesn't seem to be a " best " option

especially when it might be preventable if you start DMARDs sooner.

As far as all the female stuff, I can't help. But this might be a

reasonable excuse for delaying DMARDs, if you hope to have more

children.

While you may have PA, I'd be a bit wary that you were diagnosed so

quickly with a sausage finger. I mean, you do see to have many of the

symptoms and could very well have PA, but to be diagnosed almost

instantly by presenting a sausage finger sounds a bit premature

especially if you had had no Psoriasis. Yes you can have Pa without

Psoriasis at least initially, but rheumys are usually very reluctant

to diagnose without it.

Stay Well,

[Guest guest]

Hi and Welcome!

I'm sure you will find this group a literal fountain of knowledge. For me it

has been a Godsend.

I think the most profound thing I have learned from the group is that there

doesn't seem to be any " normal " set of symptoms for this disease. I swear,

literally once a week I find something new that I have experienced that is

likely related to this disease. Your post, for instance. I too had shingles at

a very young age. I was 23 I think, I am now 51, diagnosed with PA at 47. The

doc said he had never seen a case in someone so young. Could be more of an

indicator that something is different about my body that could lead to PA or

maybe unrelated but interesting none the less.

Hope you find a good rheumy to take care of you and help your condition.

Deanna

[Guest guest]

I keep a diary about what is going on with my body. I write when I flare, how I

feel, keeping dates. I can now pretty much tell you when I am going to flare. I

also keep a list of foods that make me flare or feel tired. By writing this all

down you have records and can stay away from those foods. Know your allergies

because I have allergies to some meds. Write down everything you take... even

over the counter drugs and herbs. Ask when it is better to take the med he may

prescribe. IE> a.m or p.m. Also, ask the pharmacist these questions. I get my

best answers from them. Weight is important when you are fighting arthritis. Try

to keep it down because you will feel better. Write a summary about your diary

and share it with your doctor. Also, get a copy of your records each time you

visit so you can keep them updated and will have copies. The doctors office

keeps these for just a few years and you may need them for later. In my case, it

was 10 years later and I had switched insurance companies and they wanted these

answers. Some meds have to be justified that you took them. I make copies of my

prescriptions that I get from the doctor I had to prove I had taken methotrexate

before insurance would pay for Enbrel. I luckily had a copy and could prove it

so I they paid for my Enbrel. It has been wonderful for my PA. These are a few

things I do. Good luck.

cathy barnes <truegrits1@...>