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Bevi
08-02-2008, 11:41 AM
Does anyone have knots come up on the bottom half of their legs? From my knees down to my ankles i have knots the size of a dime to a half dollar. They are the same color as my skin - no red or purple.

Bevi

sits_inthe_corner
08-02-2008, 04:13 PM
Bevi,

I think I'ld have to see them to understand what they are like. Sounds like a trip to the doctor's is in order.

Do it soon, and let us know what they say.

Do they hurt or are they just hard?

Bevi
08-02-2008, 04:30 PM
The doctor did a sural nerve biopsy to see if it was vasculitis but it came back negative for vasculitis but abnormal. I was tested for bechet's and tb and both were negative. I just wondered if anyone else has these lumps.

Bevi
08-02-2008, 04:31 PM
oops.. no they dont hurt they feel like solid muscle. The only problem is they keep growing.

Bevi
08-02-2008, 04:32 PM
i also have fibromyalgia but the doctor says its not related

sits_inthe_corner
08-02-2008, 04:38 PM
Hang in there Bevi,

I'm willing to bet Saysusie will have a gob of information for you, she should be along shortly to answer. She's got tones of information :)

I know this must be alarming, specially when they dont have an answer for you.

Bevi
08-02-2008, 04:57 PM
Do you have headaches? It feels like i am wearing a really tight hat around my forehead. I have blood veins that are starting to show up on my face. I dont know anyone with lupus so i dont know whats related and what is not.

sits_inthe_corner
08-02-2008, 05:19 PM
yes...I get really bad headaches about 5 times a year. I have to go lay down and be perfectly still in the dark.

They can last for up to 3 days.

Other's here get them too.

I'm also on plaquenil which can also cause headaches, but I take both pills at the same time with a small tub of yogart just before bed, so I sleep through the worst of that.

I'm not full diagnosed yet. My Rhuemy is a pain in the arse. My mother had lupus, my sister has it.

My Rhuemy says that lupus is just a catch all doctor's use when they don't know what's wrong with you.

Waiting lists for rhuemy's here is very long...and I'm waiting for a new one. In the mean time I'm stuck with stinky face.

Bevi
08-02-2008, 05:30 PM
Thats my problem too. All he would say was it was a "lupus related autoimmune disease". I already have thyroid - have for almost all my life. Now i have FM, Carpal Tunnel, Arthritis up my spine and in both knees. I have PCOS and Endometriosis. The doctor said that i have extremely high inflammation. After reading through alot of the posts on here i cant understand why he hasnt treated me for it if its so dangerous. He tested me for vasculitis and it was negative but can you even have vasculitis without lupus? I just dont know. I go in two weeks for more blood work and then the 28th to see the dr. I have so many questions. And after reading the posts i am kinda scared because alot of the things described on here - i have. I should feel blessed because my dr said he knew i was very sick. But knowing and doing something about it is two diffrent things. I just dont know. - Sorry for the rant.

sits_inthe_corner
08-02-2008, 06:05 PM
Bevi,

It may take some time to get the answers, but at least you are on the way to finding out.

Is this your family doctor or a rhuemy?

Lupus is very complex, it affects people differently even though there are alot of telltale signs.

Most of the things we deal with are annoying but livable. There are some more serious issues.

I've had several ANA tests...some of them negative some possitive and one boarderline.

I have the butterfly rash on my face and have tested possitive for malar rash on my arm. I have arthritis in a number of my joints...and the list goes on.

Best advise I can give you is make lists of your sypmtoms (if you don't already do so) It helps when you go into the doctor.

Bevi
08-02-2008, 06:10 PM
My doctor is a rheumy. I appreciate all your help and answering my questions.

sits_inthe_corner
08-02-2008, 06:14 PM
Bevi,

You should pm your question about the knots to saysusie. She has gobs of information and I'm sure she can come up with some information for you.

Saysusie
08-04-2008, 11:10 PM
Bevi;
I am SO SORRY I missed your posts :? Sometimes I have to get away from my computer and it goes into sleep mode. Often, when that happens, I log back on and I can no longer tell what the new posts are, so some get missed and I apologize for missing yours.
I did some research on the lumps on your legs.
If the lumps are growing fast, you should get an ultrasound done immediately to make sure that they are not cancerous. I have a lump on my upper thigh which my doctors did an ultrasound on and found that it was non-cancerous lumpoma (a benign tuberous fatty tissue). I was told that this happens often, many times they go away by themselves, but sometimes they are there to stay. However, I was told that if it grew or changed in size, to immediately return to the doctor for a new ultrasound and, perhaps, a biopsy.
I agree that they are probably not related to your Lupus or you FM. But, I would suggest that you be aggressive with your doctors about finding out exactly what they are. Please let us know how it goes and what you and your doctors discover.

Peace and Blessings
Saysusie

Bevi
08-05-2008, 09:39 AM
Saysusie,

Thank you for researching the lumps for me. They have done 2 diffrent lumps in biopsy. Both were benign and they were negative for bechets. I think they bother me so much because i try to be pretty active and they stick out on my legs. Next week i go do more bloodwork and then on the 28th i go back to they rhuemy. I feel alot more educated about this disease from reading everyones posts. Alot calmer-I am not in panic mode anymore. I just have to gather my thoughts and let him know everything i am going through. I have read a majority of the posts in this forum. Ya'll are an awsome group of people.

bevi

Wanda
08-07-2008, 11:16 AM
I urge anyone who gets migraines or even just bad headaches to consider going completely off chocolate, aged cheeses and shellfish for a few weeks and see if it makes any difference. - I had to do it about ten years ago, and a buildup in my system of theobromine from the chocolate was what was causing my migraines. I was off chocolate for six years. Now that the chemical is out of my system, I can eat a tiny bit of chocolate every now and again; but I can tell when I'm going over my limit. If I have a couple of chocolate Frostys in a week, the little "nagging headaches" start thus warning me the ramping, roaring migraines are on their way if I continue. - I also quit having shrimp and all other shellfish; I liked shrimp, but noticed nagging headaches starting if I even had a couple, so I've hardly had a shrimp in probably 16 years.

Wanda

Saysusie
08-07-2008, 03:45 PM
Bevi;
You are most welcome. I'm glad that you are calmer and that your lumps have been biopsied. I understand the cosmetic concerns and you should not feel bad about not wanting these lumps on your legs. I do hope that your doctor can discover exactly what they are and do something about them!!


Wanda;
Thank you for the information about migraines. I had been told by my doctor to eliminate chocolate, caffeine and cheese. I've done OK with the caffeine and cheese......not so good with the chocolate. It's really hard to give that one up! :lol:

Peace and Blessings
Saysusie

Wanda
08-07-2008, 04:14 PM
Susie - I really didn't have to totally give up chocolate - well, I did give it up by choice for six whole years because I was hurting so much I was willing to do anything to get rid of that scary, recurring pain that came closer and closer. I imagine I could have stayed off it for about a year and flush the theobromine out of my system; but I stayed on the safe side and went six - but it got flushed out good. For the past ten years since then, I've been able to actually have a small amount of chocolate candy about every couple of weeks, or maybe a Frosty once a week. If I press my luck, the little nagging headaches start up and I know it's time to back off for a couple of weeks.

Who knows? Chocolate and shellfish may not be your nemesis, but they were mine.

Wanda