DR suggestions

[Guest guest]

Just wandering,

I've had my lumps for a long time. Approx 10 yrs. They usually come

1-2 at a time. Sometimes more. They have lasted from weeks to

months. I guess what I mean is that a flare up lasts that long.

Sometimes one will o away while another is occuring. My general

health stinks. I have gone for many years blaming on thing after

another. Claim to be hpocondriack(I know spelling is wrong, I'm

known at office for " lack " of spelling ability) and that I'm just

nuts. Is it possible that after all these yrs my problems could be

related to my lumps? Should I focus on the cause rather than the

cure. Any suggestions who to see. Dermatologist dx, but was unable

to help with getting rid of the lumps. they actually go away or

subside on their own. Due to my health I am curious if there is

something else I should be doing. I did have recent breating test,

dx w/ inflamed small airways. Suggested rx was flovent and

albuteral. Helps breathing, still have lumps. I must add I'm on

birth control. Have been for 18 yrs. Minus 3 yrs when Dr

recommended to stop. Still developed lumps and resumed after 3 yrs.

Now on estrace due to irregular monthly's. New flare up. Seems to

be worse than usual. I've been reading what others say about their

own lumps and health. I am sympathetic as I don't believe mine are

as bad as some others. I am afraid mine may worsen. Sometimes I

don't think I can make it through a work day due to other health

problems. If they are related, I'ld like to find out how. " I want

my life back, It's been to long now. " How do you all manage?

" LUMPY "

Brigette/PA

[Guest guest]

Dear Brigette,

I am sure every member of this group has a different and a valid

answer. Since you are able to go into remission without drugs, like

me. I'd say that is a good sign. Shortening the flare up would be the

goal here right? I am using the TEDS support stocking and having great

results. I also get lots of bed rest, which I know is not possible for

many who have jobs and families. I don't know if you have ever tried

potassium iodide, but that would be my first drug if I needed to try one.

Focusing on the cause is the key, but many of us have not ever

discovered the EN trigger, so we are back to square one. I would

definately try to get that new TB test since you have breathing issues.

I think anything that helps your general health will help with EN. So

if you need to improve your diet, start there. If you are stresssed

up, work at decreasing your stress. I have read that sometimes a

change of birth control brand can help, but I have no experience there.

Our members have explored different vitamins and minerals, various

diets, prayer and foregiveness. It's all good. There are many roads to

good health. What works for one may be totally ineffective for

another. For me it is important to be happy. I like to laugh and lucky

for me I have a hubby that keeps me laughing. I enjoy comedies too. My

home is peaceful and I love my garden. I love my cats and have many

animal friends in the neighborhood. This all helps to reduce stress

which I feel is a factor in my own EN.

I hope that gives you some ideas, Brigette. I think drs. call patients

hypochondriacs when they cannot help them. EN may erupt in different

places, but it is not in your head :-)

Love,

[Guest guest]

Good morning, Brigette!

Nothing ticks me off more than a doctor who blames the patient!! The

first thing you should do is print out everything and anything you

can find on EN and hand it to him and tell him he should have paid

attention in his Dermo class!! Yes, we all feel like crap and we all

know why: Even just one lump can bring on 2-14 days of feeling like

we got hit by a truck before, during or after its presentation!!

It's the malaise all the web sites talk about; it's exhaustion, it's

achiness in places we're not even sure exist because we can't put a

finger on it or put it to words for our doctors. With some it comes

with fever and chills . . . it's just horrible, AND IT'S REAL!!!

After you've handed all this information to your doc, tell him you

want to see another specialist, a new dermatologist, or a

rheumatologist, internist, pulmonary, or someone at the nearest BEST

hospital. I don't know what you have there in PA, but up here a

spell we have UCONN and UMASS . . . when someone mentions those

names, we all KNOW we're getting the best care possible!

I ended up at UCONN after my derm doc couldn't get rid of my lumps

and he genuinly felt bad about it but didn't feel bad about sending

me to the best that he knew! I'm still getting the lumps; but I

realize that I'm idiopathic and won't have a cause that I can treat

and get rid of. I am trying an experiment with myself though, which

I will share with everyone soon . . . I may have found MY reason for

the illness . . . but don't want to jinx it =)

So, kick your doc's butt with your many pages of information and

demand his help or move on yourself to someone who will help! What

you're feeling is REAL and we can all attest to that! Go ahead and

print MY post out to him! That'll fix 'im!! =) Just wait till Jeff

reads your post hehehe . . . you might want to print his response out

too! =)

Have a great day, you and everyone!!

M

> Just wandering,

> I've had my lumps for a long time. Approx 10 yrs. They usually

come

> 1-2 at a time. Sometimes more. They have lasted from weeks to

> months. I guess what I mean is that a flare up lasts that long.

> Sometimes one will o away while another is occuring. My general

> health stinks. I have gone for many years blaming on thing after

> another. Claim to be hpocondriack(I know spelling is wrong, I'm

> known at office for " lack " of spelling ability) and that I'm just

> nuts. Is it possible that after all these yrs my problems could be

> related to my lumps? Should I focus on the cause rather than the

> cure. Any suggestions who to see. Dermatologist dx, but was unable

> to help with getting rid of the lumps. they actually go away or

> subside on their own. Due to my health I am curious if there is

> something else I should be doing. I did have recent breating test,

> dx w/ inflamed small airways. Suggested rx was flovent and

> albuteral. Helps breathing, still have lumps. I must add I'm on

> birth control. Have been for 18 yrs. Minus 3 yrs when Dr

> recommended to stop. Still developed lumps and resumed after 3

yrs.

> Now on estrace due to irregular monthly's. New flare up. Seems to

> be worse than usual. I've been reading what others say about their

> own lumps and health. I am sympathetic as I don't believe mine are

> as bad as some others. I am afraid mine may worsen. Sometimes I

> don't think I can make it through a work day due to other health

> problems. If they are related, I'ld like to find out how. " I want

> my life back, It's been to long now. " How do you all manage?

>

> " LUMPY "

> Brigette/PA

[Guest guest]

Greetings Everyone

WELCOME to all the new members:)

In my opinion a rhuemologist is the right doctor to see.

Since EN may be an autoimmune disorder, a dermologist, in my opinion, is not the way to go.

This is not all in your head. I hate it when doctors say this.

I was told that many times, during my five years to a diagnosis.

Well, really they were right, I have brain vasculitis.LOL

Great day to everyone

Jim