multiple symptoms????

[homesteadingnky]

About 3 weeks ago I started experiencing pain in both thighs from my hips to my knees. Very painful burning feeling and it hurt like crazy especially when I stood up or sit down. with in a couple of days my knees were hurting really bad (I wasn't sure I was going to make it through the day at work it hurt so bad!). That evening when I got home my lower leg (calf area) was hurting so bad, I started to rub it and noticed an extremely painful knot. Then I noticed about 5-6 more all between my knee and my ankle. Then I noticed 4-5 just like them on my other leg, still between the knee and ankle. That night I was hurting so bad I couldn't sleep. There was no way to get comfortable. It hurt just to lay my leg on the bed.

I went to the Dr the next day and they examined me and the 1st question she asked was if anyone in my family had Lupus. That floored me because I never would have suspected Lupus from knots on my legs. Anyway, I answered that yes my grandmother had Lupus before she died. They ran a CBC which came back good and checked for Rhuematoid factor which also came back good and a few other test one of which showed a high C reactive protein (which she says is just a marker to show inflamation in the body) she also did a Lupus panel test which showed neg for ANA. She said that she still suspects Lupus or some similar autoimmune disease and has made me an app. to see a Rhuematologist in 2 weeks. Meantime she gave me a steroid pack (prednisone) and an antiinflamatory (Celebrex) which I am taking now but do not want to take long term because of the risk.

As the days have progressed so has the pain and symptoms! The steroids didn't work the knots are still there with the addition of a few more and as painful as ever or maybe even worse. Now the pain has moved into most all of my joints. My ankles, knees, elbows, wrist, fingers, all hurt so bad. It's difficult to stand and very difficult to walk.

A couple of days ago I noticed pain under my left arm first then my right arm then noticed pain and some swelling in my neck and under my chin (lymph node areas) I went back to the Dr and they did another CBC which still was normal and drew enough blood to also check my thyroid (test still pending). They gave me a cortisone shot and a strong antibiotic just in case it is an infection (though I have no fever and my blood count is ok). Today the pain is still horrible and the knots still there. The one in my left calf feels like a constant charlie horse! The knots are anywhere from marble size to 3x that big, only one has a red mark on the skin the rest most aren't visable but you can feel with your hand.

I haven't posted this to complain I just wonder, have any of you experienced anything similar to this? Any ideas? I have also sent a hair analysis off and will consult with a fellow who is a Christian Chiropractic Dr/Iridologist/Naturopathic DR that some of our friends use and believe in and will follow up with the Rhuematologist in 2 wks though I can't imagine 2 more wks of this. We truly take so much for granted!

Let me know if you have a miracke cure, and Yes, I have been praying!!!

Thanks,
Homesteading Dad

[nancy1340]

Wow, I have no ideas for you but sure hope and pray they find out what it is and can treat it.

[sbemt456]

From another Kentuckian, my prayers are with you and please keep us posted on your progress, I have worked EMS for 14 years and I have never seen any thing like that. Any other health problems you are aware of?

[homesteadingnky]

Thanks. I appreciate the prayers!

The only other health problems I've had lately is dizziness and I'm not sure if it's related or if that just has to do with my ears. I've had problems with my ears since birth. I'm going to contact my Dr again in the morning and see if there's anything else we can try. 2 wks is a long time to wait.

Thanks again,
Homestead Dad

[WRTN]

Has the Doc checked for blood clots? Already sent a word up for you.

[homesteadingnky]

I have actually seen two Dr's and neither have checked for blood clots. However, my wife called to see if there had been any cancelations and as it turns out there had been. My new appointment with the rhuematologist is tomorrow at 1:30pm. Thanks for the prayers. I beleive God answered them today! :)

I have no idea what I have or what's going on in my body but hopefully tomorrow the Dr will be able to help us figure it out. Just being able to identify to problem will help us to at least psychologically size up the situation and develop a strategy to deal with it and hopefully beat it. It's not knowing what your up against, that wears on you so much!

Thanks again,
Homestead Dad

[Catalpa]

Have you changed your diet? Or been exposed to some sort of allergen? Sometimes the body will react in strange ways to environmental toxins.

I hope the docs can help you figure this out, but remember that they are constrained by their training, and may not 'look outside the box', but rather make your symptoms fit something they know, not necessarily what your body is trying to say.

I strongly, strongly recommend that you check out what Doug A. Kaufmann has to say. After doing some research, we are convinced that my Dad got luekemia because of constant high doses of antibiotics to fight a prolonged sinus infection - which wasn't a bacterial infection after all, but mold and yeast, and his symptoms inlcuded dizziness and lot of pain and swelling in his legs.

A lot of great information about the mycotoxins that destroy your body can be found by reading the books written by Doug A. Kaufmann. "The Fungus Link 2" actually started my Dad on the road back to health when the doctors have given him six weeks to live. That was almost eight years ago; he's 72 now and doing great.

You can find Kaufmann's work at http://www.know-the-cause.com/.

Best wishes!

Cat

[sbemt456]

OK, homesteadingnky, I am just another kentucky native gettin a little concerned about you, we havent had any updates. Praying all is well with ya.
stella

[homesteadingnky]

Thanks for the prayers, concern, and advice from you all. I was able to see the rhuematologist last week. After examining me, drawing what seemed like a gallon of blood, and taking some x-rays, he basically said he was clueless at this point and that I had moved to the top of his "mystery list".

He said he needed to wait for the results of the blood test to know what he needed to do next. He also put me back on a stronger dose of Prednisone and said that should help. Unfortunately it has not helped and the pain is still so intense in my joints and muscles and yesterday I started having a lot of numbness and tingling in my left arm, my feet, and even on the left side of my head. I'm also still having a lot of pain under my arms. I don't know if it's in the lymph nodes or the muscle. I only know that it's pretty intense at times.

I go back to see the rhuematologist in Nashville tomorrow and get the results from all of the blood work. Hopefully they will point us in the right direction. We have also made an appointment with a very well respected Naturopathic Dr/ Chiropractic Dr/Iridologist in St. Louis and we leave first thing Weds. morning to head up there. My appointment with him is at 1:30pm on Weds. It's a 6 hr trip but will be worth it to get some answers!

I'm just hoping that one of them has some answers as to why I seemed so healthy a month ago and now I can barely walk and am in constant pain. The rhuematologist said that Lupus was still a possibility. Then he said, well I had as much of a chance of having lupus as I did of not having lupus, if that makes since. He really was stumped. I don't care what name that put on it I just want some answers so that I know what I'm up against and can put a plan together to beat it.

I really am greatful for the advice and prayers from you all. Concerning Doug Kaufmann, I use to watch his show several years ago called "Your Health" and then one day he was gone and I had no idea what had happened to him. I went to his site and enjoyed seeing what he was doing now. It has given me some things to consider as well. Thank you.

Even though things aren't how I wished they were and I confess sometimes I fear the possibility that this may be something that I have to live with and that is depressing since I am only 37, I haven't given up by any means and I do intend to aggressively fight what ever this is and win and I realize more than ever how incredibily blessed I am.

We truly take so much for granted. So to you all I say wring every moment of life out of every day. Work hard, Play hard, Honor God, and have fun.

May God richly bless you all!
Homesteading Dad

[sbemt456]

Keep your chin up and dont let this get you down. Pain is a hard thing to deal with when you have been healthy and able to do what you want, been there done that but not like you are dealing with. My heart goes out to you and prayers for you as well. Keep us up to date.


stella

[annabella1]

I had similar symptoms about 2 years ago. They were limited to my right leg and not all over like what you are talking about. All of my blood work was totally normal. My doctor finally said to try MSM in large doses. (10 times what was recommended on the bottle). It did eliminate the pain and the lumps in about 10 days. Occasionally now I will start to get the pain in my right thigh and I will go back on MSM for a couple of days. I try to avoid anything that will cause inflamation. I no longer eat nightshade vegetables (tomato, potato, peppers and eggplant). I eat a lot of probiotics (yogurt, acidopholis milk, sour cream, cheeses) that help keep friendly bacteria in your digestive system. They never did decide what it was I had, and I sure wouldn't want it back or all over like you have.

[lookitsmary]

I have Fibromyalgia and it sounds allot the same, except for the lumps. I do have some small lumps that can be felt under my skin on the outside of my thighs that are very painfull to the touch. I remember reading that Chronic Fatigue Syndrome has lumps as one of its symptoms along with all the rest of the symptoms you described. Of course fatigue is major as well. A rheumatologist diagnosed me with Fibro, so I would assume yours would have checked for that as well. You might bring it up if it hasn't been mentioned. You never know!

[annabella1]

How are you doing? can we get an update? You are still in my prayers.

[theresehirko]

I didn't give your name, but I asked every doctor that i know at school about your symptoms and all were stumped, which is not surprising since I told them all that you were out of state. (Everyone is afraid of being sued these days). I'm not sure if you are near a teaching hospital or not but if you are, have your doctor refer you to someone over there. Generally, if it's a stumping question, university hospitals are great. Is there any pattern to these lumps, like they would be following some sort of trail? The lymph system is throughout the entire body and its job is to collect the bad guys and get the good guys to attack them and destroy them. The under the arms knots is what makes me question the lymph system. I'm not a doctor, however, just a nursing student.

[homesteadingnky]

Thank you all for your prayers and concern. Sorry I haven't posted lately, it's been a long and busy month. I have had numerous blood test (so far all have been ok) I had a bone scan (which was ok) and a CT scan. We called my doctor to let them know that I had the CT Scan that morning and see if they could get the results that afternoon, later that afternoon my Dr called and wanted me and my wife to come up to the office so they go go over the results with me. I knew they must have found something but had know idea what. The CT Scan had reveiled enlarged lymph nodes in several places in my abdominal area only. All my organs including the spleen were ok. My Dr said they suspect some type of lymphoma based on what they saw but that there are other things that can cause the lymph nodes to swell including Lupus. We had read that Lupus can cause lymph nodes to swell all over your body, but so far all the other test including blood test show normal. I'm still having pain in my legs, especially my left calf muscle. The last few days I have noticed some pain and discomfort in my abdominal area. I have an appointment at Vanderbilt in Nashville tomorrow with a cancer Dr. Again I appreciate your prayers and I'll let you know what I find out. Tomorrow is just to discuss what's been going on and to let the Dr go over my test results. I won't know anything until he scedules and performs a biopsy.

Homesteading Dad

[Catalpa]

Thanks for the update. I was wondering how you were doing.

We'll keep praying!

[mtwildflower]

Holding a good thought.

[homesteadingnky]

Thanks! *I went to Vanderbilt. *The Dr I saw thought that I had already had a biopsy (apparently they don't read anything that's sent to them). *He said he couldn't do anything until I had one and I needed a chest surgeon to do the biopsy, so he made me an appointment with one there at Vanderbilt on May 6th. *We called them this morning to see if we could get in sooner. *They said probably not and this appointment is just another waste of time (talking) and they said it could be the last of May or the first of June before they actually do a biopsy. *It all just blows my mind! *But I'm hanging in there and believing God for healing! *He did say that there are many things that can cause swollen lymph nodes and that it may not be cancer at all, but then he said you never know, it could be anything right now, they just won't know until I get the biopsy. *It may take a while but I'll update as I know more. *In the mean time, I have a garden to finish planting today! *Actually, my wife, daughters, brother-in-law and sister-in-law are doing most of the work, but I do intend to help as I can. That's my therapy!!!!!!

Thanks again for the prayers and thoughts.
My best to you all! *Your a fine group of folks!!

Homesteading Dad

[alma]

Hi, "dad"
How about going to an emergency room.
Whenever i've had to go there for any reason, they give you a complete rundown, more often than not, and even when i had to go for a foot infection a few days ago, they gave me blood work, x-rays of my chest, tested heart on machine, , etc. I can't tell you all they did, and i got better attention there than any doc i know.
They even checked me for cancer, once over light, because of my old cancer 35-40 years ago and the new one two and a half years ago, and lots of skin cancers over the years that they take off with liquuid nitrogen.
I was there for a few hours and got treated like a queen rather than like a statistic in docs offices.
Just maybe it would work and facilitate more attention to your problem and sooner. love, alma

[homesteadingnky]

Well, I finally have some answers and some good news. The same day made my last post I contacted my family Dr. and told her what I had found out at Vandy and how long it was being drug out. She rolled up her sleeves and went to bat for me. By the next day she had me an appointment to have a PET scan and a lung test for the following Monday. Both of these test had to be done prior to the biopsy. She also had me an appointment the following day with a chest surgeon. He looked at all of my test results and then scheduled a biopsy for the next day. They had to put me to sleep and make a 2 1/2" - 3" incision at my throat area and went behind my sternum to get a biopsy of the swollen lymph nodes. He took 20 samples and tested them and we got the results today. No cancer! Praise the Lord!! They beleive it is "Sarcoidosis". Both the cancer Dr at Vandy and this chest surgeon mentioned before the biopsy that they thought it might be this. I have an appointment with a pulmonologist next Weds who is use to treating this disease. I appreciate all your prayers and comments. Hopefully, I'll be on the road to recovery soon.

God bless you all,
Homesteading Dad

[sbemt456]

Well finally good news, glad you finally have a diagnosis and are on your way to treatment and recovery. I kept checking this link for an update praying for the best. So hang in there and keep praying.

Blessings,
stella

[theresehirko]

I know two people who had sarcoidosis and who are doing well today.

[annabella1]

Wow this is an eye opener, I looked Sarcoidosis up on google and I may have had this for a long time. I have the red bumps on my skin exactly like a picture of skin sarcoidosis I found on the internet. The only time in my life that they cleared up was when I was on tetracycaline for something else, and my Doctor then said I probably would "outgrow" those bumps. Tetracycaline is one of the treatments for skin sarcoidosis. That was 35 years ago and I haven't outgrown them. The MSM I took when I was getting pain in my thigh and lumps in my calf is specifically to reduce inflammation, like the anti-inflamatory drugs they use to treat sarcoidosis. And I also drink tonic daily to decrease muscle spasms and it contains quinine which is related to the hydroquinone that they use to treat sarcoidosis. So maybe the being tired all the time has to do with this. Enough about me. I am glad you got a diagnosis and I hope that your treatment is going well.

[homesteadingnky]

WOW! :o That is amazing. Hope you are able to find a cure!

I still have to have my eyes checked and have some kind of echo something test done on my heart before I go back to the pulmonologist next week. I seem to be getting a little better somedays only to have a set back for a few days. Right now I'm having some breathing issues, but hoping it's just allergy related. A lot of folks around here have been hit hard by allergy/cold related symtoms lately.

A GREAT BIG THANKS TO ALL OF YOU WHO PRAYED FOR ME OR CHECKED UP ON ME DURING THIS ILLNESS!!!! I really appreciate it. You guys/gals are a fine group of people!! I couldn't ask for better neighbors!!!

Take care and may God bless you all,
Todd

[MYellowRose]

Todd how about an update on all your running to the doc and the hospital? I know that many diseases have similar symptoms and are difficult to diagnose. I went through much of the same thing before being diagnosed with Stage IV rheumatoid arthritis and a couple of years later with chronic disease anemia. Diagnosing doc for the RA told me that many times people with RA have what their parents call "growing pains" as children as well as many other undefined pains in their bodies. When I see the rheumatologist they usually check me for fibromyalgia as many people with RA also develop it at a later date. If you're on certain medications long term you may be at risk for the chronic disease anemia if your medication leeches the red cells. I'm on 650 mg. of iron daily to keep mine under control.

[homesteadingnky]

Since you ask here's an update:

I am having more pain now than at any time since this started back in early March of this year. The pain is in my joints (ankles, knees, elbows, and wrist --but my ankles are the worst) and in my calf muscle, especially the left one and in my lymph nodes especially under my left arm.

The pain is constant and it moves from place to place and is very intense. I can't stand or walk for very long at a time and I must use a cane when I do.

The 2D heart echo revealed a leaking aortic valve. The Dr said it was a significant leak and may need to be repaired or replaced in the future.

I have just recently had issues with my blood pressure and pulse both elevated significantly for no reason. They have always been normal and when I was at the cardiologist last week he became concerned because of my pulse. My BP was 125 over 111 and my pulse was 133. He has given me medicine to slow my heart rate down and I go back to him in 1 month. He said it could be Sarcoid related.

As for treating the Sarcoidosis, I have just been weaned off of Prednisone. It didn't work for me (the Dr said that she had never had anyone that didn't respond to it until me), I am now on Hydroxycloroqn. It's actually an anti-malarial drug but also used to treat Sarcoid and RA.

So far nothing is working, the pain is getting worse, and if I'm not better when I go back to see the Dr is 2 wks she said she would send me to Vanderbilt because she doesn't know what else to do. There doesn't seem to be many Doctors who are familar with Sarcoid enough to treat it.

I am just praying and trusting God each day and living the best I can. Hoping for some answers and for healing soon.

By the way, Bernie Mac that just died had Sarcoidosis. Bill Russel (the basketball legend) and his daughter both have it, and Reggie White ( the minister of defense that played for the Green Bay Packers) died from complications due to Sarcoid. Most have issues with their lungs and therefore with breathing problems. It hasn't effected my lungs yet. My worst problems are the intense leg pains and the issues with my heart.

So, there you have it. Probably wished you hadn't asked for an update now huh? I can't complain!! Having experienced what I have and researching what others are going through, it makes me realize just how blessed I truely am!!

I do agree about the medicines. Many of the ones I've read about say that the medicines have had a more negative effect on their health than the disease it'self. They monitor my blood sugar and I have CBC's and some other test done every month or so.

Sorry to here about all you've went through! Hope you're doing well.

Thanks for asking,
Todd

[WileyCoyote]

You may think it weird but - have you had your soil and water tested? Not just the standard Ph or chem levels, but for metals or industrial contamination? Even hog farms buried for 50 years can start producing odd sorts of reactions in folks who build on top of them...

I have always been pretty healthy, tough and constantly going. Then I started getting all sorts of weird infections, three that went septic and nearly killed me, had surgeries to remove badly damaged organs. Last year I was sitting at my daughter's work, and she saw this weird scar that had developed on my face. She insisted right there that her boss (a pathologist) look at it - and he said, "You have lupus".

Now, I've read up on it, and it is a very hard disease to diagnose until the lesions appear. There are many many symptoms, and you can have some, some at different times, most, all - or none! But the biggest thing I read was that it can be caused by environmental factors - the soil where your food is grown, or the water that you drink and/or water your vegetables with. Since we lived downstream from a nuclear waste storage facility - where the FedGov advises folks not to eat more than three fish a month from the river, even though the tritium levels are "safe" - it was time to move. You never know what was put in that soil or water 50, 100 years ago - or last year - that is getting into your body and building up and up...

Whatever it is, I hope they find it and fix it. I'm glad it isn't cancer, but being progressively debilitated for ANY reason scares me.

[homesteadingnky]

Thanks for the advice. *I'm moving in 3 weeks so the soil and house will be different. *They aren't sure what causes Sarcoid but environmental sources they believe could be a cause. *I work in construction so I'm around all sorts of dust and chemicals and I garden and have my hands in the soil year round usually. *Who know? *I have lost my job and I'm moving so hopefully if those were the sources they will no longer be an issue.

I'm sorry to hear of all you have been through. *My grandmother had Lupus. *They thought initially that was what I had but the biopsy proved Sarcoidosis.

So, how are you and where are you at in your journey with this illness?

I'll be the first to admit I haven't taken good care of my body! *I haven't eaten very healthy and I had several years of abuse (cigarettes, dip, alcohol). *I stopped all of that in '99 and started a new journey. *However, I still didn't eat very healthy. *I had been trying to make the change to a healthier lifestyle but it's almost like it's too little too late.

I do believe that good nutrition can help to heal certain diseases. *I still struggle with it though. *Man, I love my fried foods, my chocolate, and unfortunately my RC and DR Peppers (though I'm trying to stay away from them now as much as possible).

Take care and thanks again,
Homesteading Dad

[WileyCoyote]

Oh, dear! Construction? Yes, I am familiar with that; especially within the last 20 years where we have changed from using good solid construction materials to using materials with lots of glue - as in going from wood, to plywood, to pressboard, to chipboard full of glue and all sorts of things. Not to mention going from metal pipe to PVC, and all of those extra chemicals being introduced by cutting apart and breathing in whatever those unnatural elements are made of! (If people knew what sort of dangerous chemicals went into the construction of all of those bright pretty new homes they would never move in!) Even the carpeting and spray-on ceiling stuff!

Well, I am glad you are moving; I would monitor any changes in my body (write them down daily - change or no change) and keep track of what happens. It may take some time to clean out any buildup in your system. That is actually what I am doing; we moved three months ago and progress is slow. I figured it would take at least a year to show any real effect, but the changes are slowly happening. Better and purer food, grown and raised here, and water are slowly changing how my body functions. So we'll see. Even Hubby has cut out sodas and other heavily salted and sugared and altered foods, and the change is happening with him too. Like pipe sludge with new water going thru it, it may take time to wash everything out....

Good luck to you, and you take care too... A friend of mine is pushing me to take colloidal silver to increase the cleanout and get rid of bacterial and viral residues, and I am considering that as well.

[MYellowRose]

Todd make sure you get in to see an Opthamologist (NOT optometrist) as the Hydroxychloroquin can damage your retinas! I was on it for just over a year before being taken off for just that reason. Also see if the DR at Vanderbilt will call in a rheumatologist. Even though your RA factor test came back negative you may still have it. My test was also negativie.

[cinok]

This my sound way off base but have been checked for Rocky mountain spotted fever alot of the symptoms ou describe seem similair

[homesteadingnky]

Actually I have been tested for that and many other things. The biopsy and symptoms all confirm sarcoidosis.

If you're interested you can learn more about sarcoid at www.sarcoidosis.org

I do know that the medicine I'm on can damage my eyes. I'm hoping she'll take me off of it soon! It doesn't seem to be working.

The cardizem is working though. My heart rate and BP have both been normal the last two days. Today, the Dr put me on Darvocet for pain the ultracets just weren't cutting it. The pain in my legs and slpeen have been extremely intense!!

Thanks for the ideas and suggestions!

Homesteading Dad n KY

[MYellowRose]

So glad to see you're finally getting some relief from the pain. I know what it's like to have a pain that no one can find the cause of.