RE: Unable to Diagnose Pain Stiffness Swelling

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RE: Unable to Diagnose Pain Stiffness Swelling - 11/2/2011 10:34:20 PM

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A woman I worked with a few years ago had very similar complaints. She went to a university medical center and was diagnosed with psoriatic arthritis. The other docs didn't even consider that because she has no skin lesions. Turns out her father has psoriasis and that it could be genetic. She was treated and is doing very well.

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RE: Unable to Diagnose Pain Stiffness Swelling - 11/3/2011 1:29:24 AM

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Thanks, all. I am going to revisit the Lyme Disease possibility and get retested and speak to an infectious disease specialist. I was looking on the Internet and the kind of swelling I have and the arthritic like pain (although it is not only in my joints and it migrates), seem an awful lot like what I've read about untreated Lyme Disease (and, I was in CT a year ago last summer and my grandson did have a tic on him).
I will also check out the possibility of parasites.
@ Midge _ thanks...went to Mayo Clinic where they (finally) ruled out rheumatoid arthritis (MRI with contrast of wrists and hands, plus exam, plus negative blood tests; I do have some wear and tear osteoarthritis which cannot be causing all my symptoms). All of my related autoimmune disease blood tests have repeatedly come back negative. A rhuematologist where I live diagnosed me with rheumatoid arthritis last June and gave me five weeks of methotrexate shots which put me in the hospital for a week with a terrible cough, messed up lung and severe pain on my right side from all the coughing...will write to my Mayo rheumatologist and ask him about psoriatic arthritis, whether that was ruled out along with all of the other autoimmune type diseases.

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RE: Unable to Diagnose Pain Stiffness Swelling - 11/4/2011 4:01:46 AM

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Am back consulting over the phone with my rhrumatologist from the Mayo (who does not think it is Lyme but will have me tested again if I want it and said certain of my blood levels did not indicate there would be parastites--not totally clear on that one), will send him photos and check in with him next week. If I have to go back there for more, I guess I will....also consulting with alternative expert today. Thanks everyone. Appreciate your help, suggestions, ideas...support.

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RE: Unable to Diagnose Pain Stiffness Swelling - 11/4/2011 4:04:53 AM

TheFireWithinMe

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If it's your joints that swell, have you been tested for autoimmune diseases? At least it's something to try and involves simple blood tests.

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RE: Unable to Diagnose Pain Stiffness Swelling - 11/4/2011 11:21:26 AM

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Gorgeoushair, I'm thinking what the Doc meant about the blood results not indicating parasitism translates into them not seeing alot of eosinophils in your blood smear. They are one of the white blood cells that are produced in response to the body being compromised by an allergic response or parasites.

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RE: Unable to Diagnose Pain Stiffness Swelling - 11/4/2011 12:28:39 PM

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Found this:

Top Docs In Southern Florida

While researching on the internet can be a good thing, it can also be a damaging thing. Forget about the internet (for now). Write down EVERY symptom, no matter how small it may seem or how unrelated.

My mother suffered from something called polymyositis. A very rare form of muscular dystrophy. Took her doctor more than two years to figure it out.

Have they tried treating it with steroids at all? Granted, you don't want to treat without knowing what it is, but there is also the need to have relief to get through the day.

You might also want to ask the doctors about RSD, Reflex Sympathic Dystrophy. The little I know about it, it doesn't sound like it, but I know very little. It is very rare, and often misdiagnosed.

Look for an organization near you that specializes in rare diseases. I read an article recently (sorry I can't find it) that there are thousands of diseases/disorders out there and the average doctor knows about 500. Finding a facility that specializes in rare diseases and disorders means they will be looking for things the other doctors don't really even know about unless by chance they happened to recently read an article or attend a seminar.

Another thing is find a doctor you trust and stick with him. Going to a million doctors you are going to get a million answers and each is starting fresh each time, so much time is wasted.

Hope you feel better.

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RE: Unable to Diagnose Pain Stiffness Swelling - 11/4/2011 4:44:53 PM

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@ The Fire Within Me - yes, thanks, have been tested for those...

@ Duskypearls - thanks for explaining...appreciate it..

@ LafayetteLady - Thanks for the information. Sorry to hear about your mother. I will ask my rheumatologist about it. If I go back up to the Mayo Clinic again, which I hope I do not have to do, I hope to heck that they will tackle this all together...isn't that what they are supposed to do? I feel as if I am running the show, even there....
Guess that's just the way it is these days...every doctor is a specialist in his or her field, that's it. It's not unlike being your own GC in a building project, only it's your body and your life. In any event, thanks...and will follow up on the polymyositis and RSD.

By the way, had a very interesting phone discussion with an alternative wellness expert today. He had many suggestions for my symptoms, in addition to my continuing to eat raw vegan, which I started last August and have been following off and on...now, more on than ever, I hope and plan...

Thanks everyone..

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RE: Unable to Diagnose Pain Stiffness Swelling - 11/4/2011 5:00:12 PM

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@LafayetteLady -

Just looked up polymyositis....my symptoms don't really match up from what I see. Mine (swelling, pain, stiffness) mostly involve my extremeties, although at times my whole body/muscles aches/hurts...

Also looked up Reflex Sympathic Dystrophy. Very interesting, since my symptoms started developing within a week of a pretty good fall I took last March. (After the fall, where I got kinda banged up, I got a Tetanus shot, which also may have had something to do with what's going on...some say..).
Will ask my rheumatologist about it. Thanks.

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RE: Unable to Diagnose Pain Stiffness Swelling - 11/4/2011 5:12:12 PM

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quote:

ORIGINAL: gorgeoushair

@ The Fire Within Me - yes, thanks, have been tested for those...

@ Duskypearls - thanks for explaining...appreciate it..

@ LafayetteLady - Thanks for the information. Sorry to hear about your mother. I will ask my rheumatologist about it. If I go back up to the Mayo Clinic again, which I hope I do not have to do, I hope to heck that they will tackle this all together...isn't that what they are supposed to do? I feel as if I am running the show, even there....
Guess that's just the way it is these days...every doctor is a specialist in his or her field, that's it. It's not unlike being your own GC in a building project, only it's your body and your life. In any event, thanks...and will follow up on the polymyositis and RSD.

By the way, had a very interesting phone discussion with an alternative wellness expert today. He had many suggestions for my symptoms, in addition to my continuing to eat raw vegan, which I started last August and have been following off and on...now, more on than ever, I hope and plan...

Thanks everyone..

No worries about my mom, once she was diagnosed, she was treated and lived many long, happy years. She even went into remission at one point. As rare as Polymyositis is, it is even more rare for it to come out of remission, although with my mom it did.

If you have been visiting a Rheumatologist, he/she should be up on this disease as it falls within their "specialty." Honestly, your symptoms aren't much like my mom's. The point is there are thousands of diseases and disorders out there but doctors only know a small portion of them.

By continuing to visit different doctors, even when they read the reports, they don't really get to know YOU, and that can play a major part in diagnostics.

I'm not saying to stop with the alternative medicine, but don't expect them to "cure" you.

Have the doctors indicated there is fluid around your joints causing the swelling? You say they have ruled out fibromyalgia. How did they do that, since fibromyalgia is essentially a dianosis of exclusion, meaning that they rule out all other options and fibromyalgia is the "last man standing" so to speak.

Again, search out not a rheumatologist at the Mayo Clinic, but a diagnostician (think of the television show, "House"). A doctor who specialty is finding the problem, not treating things within their specialty. You ARE the GC of your own construction project. It is YOUR body, and it is up to you to tell your doctors everything you can to assist them in treating you. It can get frustrating, and you might find yourself being treated for things and discovering that the treatment doesn't work, and you don't have what they diagnosed. It isn't the doctors are stupid, they are looking to treat you and sometimes that is done by trial and error.

No matter how frustrated you get, don't give up.

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RE: Unable to Diagnose Pain Stiffness Swelling - 11/4/2011 5:13:02 PM

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quote:

Am looking for someone who can come in and do environmental testing in the house, or get home testing kits. A few years ago I did have some new wallboard put in, following mold remediation (which resulted from improper installation of a new dishwasher), but I do not think it was the Chinese wallboard that made everyone sick.

Go away for a week and see if your symptoms abate.

When I worked in the building with toxic mold, initially my symptoms would start an hour after I arrived and go away an hour or two after I left. (Eventually, though, I was just sick all the time.)

Perhaps the mold remediation was improperly done and/or you do indeed have the toxic Chinese wallboard.

My mother just spent $400 for mold testing and I'm sure she got better results than what she would have using a $40 home kit. They found a horrendous problem in the root cellar. Recent insulation and lack of the normal summer opening of the window created the perfect storm for mold growth, affecting 50% of the house to various degrees.

Note: she used a company that performed testing only, not remediation.

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RE: Unable to Diagnose Pain Stiffness Swelling - 11/4/2011 5:17:40 PM

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quote:

ORIGINAL: gorgeoushair

@LafayetteLady -

Just looked up polymyositis....my symptoms don't really match up from what I see. Mine (swelling, pain, stiffness) mostly involve my extremeties, although at times my whole body/muscles aches/hurts...

Also looked up Reflex Sympathic Dystrophy. Very interesting, since my symptoms started developing within a week of a pretty good fall I took last March. (After the fall, where I got kinda banged up, I got a Tetanus shot, which also may have had something to do with what's going on...some say..).
Will ask my rheumatologist about it. Thanks.

Again, I didn't mean to suggest that what you had was polymyositis, only that it is rare and it took two years for my mother to get a diagnosis.

Anyway, I found a list of rare diseases, so happy researching

List of Rare Diseases

Also have you tried the "symptom checker" at WebMD? It might help you focus on all your symptoms.

Also check out this Article:

http://health.usnews.com/health-news/articles/2009/09/02/6-secrets-to-getting-the-right-medical-diagnosis

< Message edited by LafayetteLady -- 11/4/2011 5:20:14 PM >

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RE: Unable to Diagnose Pain Stiffness Swelling - 11/4/2011 5:21:07 PM

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I went full vegan about 3 years ago, for health reasons. It certainly will do you no harm. Cooked grains should be a staple. Feel free to contact me

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RE: Unable to Diagnose Pain Stiffness Swelling - 11/4/2011 8:40:49 PM

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@LafayetteLady - many thanks again. Ironically, a doctor who was supposed to be the master diagnostician around here kinda goofed with me. Long, not pleasant story. Am kinda sticking with the rheumatologist at the Mayo and those people. Thanks for your resources.

@ Kalikshama - I have been out of the house off and on, and not too much happened. Having said that, not sure it's really accurate. I now plan on getting a good testing, not remediation also, company. Thanks for the suggestion.

@ arealiveandhuman _ thanks...will contact you soon.

...really appreciate your interest, time, support and good wishes....hate this, but...here it is...."hugs".....

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RE: Unable to Diagnose Pain Stiffness Swelling - 11/5/2011 6:27:03 AM

TheFireWithinMe

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If you want to check out the RSD angle or just plain want to know more, check out this site: http://www.crpsadvisory.com/ it was set up and is run by a friend of mine who has it and wanted to get accurate info out there.

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RE: Unable to Diagnose Pain Stiffness Swelling - 11/5/2011 10:38:14 AM

avena

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I can't offer any medical suggestions, since that definitely is not my area of specialty. But I can empathize with the frustration that goes with doctors unable (or unwilling) to figure out what's wrong. I had to threaten to punch my new doctor if she repeated what past doctors had done...which is pat me on the head, tell me that I was fine, and to just deal with the symptoms. I'd be dead now if she hadn't taken me seriously.

But...I can offer advice on the possibility of mold that has been mentioned. I'm an environmental technologist, and the company that I worked for did mold assessments on everything from industrial through commercial, down to residential buildings. Not all mold growth is the nasty kind, but symptoms of prolonged exposure to toxic mold byproducts can present similarly to an autoimmune disease.

One of the most common situations we encountered when doing inspections was improper remediation of a past mold problem. Since you mention a relatively recent mold problem, you may want to have it checked. Most people don't realize that the mold they can see is just the tip of the iceberg, so to speak. Mold testing through visual inspection alone is often not enough to diagnose a mold problem. The specialists in our company did mold counts and mold cultures to determine exactly what the problem is, if there is one at all.

I'm not sure what your financial situation is like, but it may be worth it to have a mold assessment done. There are reputable companies in your area who do assessments. I'd recommend steering clear of the ones that also do the remediation, since they may be more interested in the next step than in the initial diagnosis of the presence or absence of mold. I'm not sure what the price range would be in your area, but for us up here the price exceeded $1,000 but rarely exceeded $5,000, unless we were looking at extremely large buildings, such as office buildings. In this case, you get what you pay for, but it does pay to shop around and do some homework on the companies you're considering. You want to be sure an actual specialist will be doing the inspection and testing.

Good luck, and I hope you find out what's causing your symptoms. Not knowing was the most frustrating part for me. Dealing with the treatment, no matter what it was, was a lot easier once I knew what was wrong.

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RE: Unable to Diagnose Pain Stiffness Swelling - 11/6/2011 1:43:07 AM

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Thanks, Fire...

@ avena -- I plan to find a really good inspection company, for mold and anything else. Thanks for your empathy for all the frustration with doctors. I keep telling them that although,. as it is sometimes said, they look for horses before zebras, sometimes they should be looking for zebras...

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RE: Unable to Diagnose Pain Stiffness Swelling - 11/7/2011 8:48:43 PM

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Good day today, found independent, home environmental tester -- looking forward to finding out whether or not there is anything here in the house that might be causing or contributing to my symptoms.

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RE: Unable to Diagnose Pain Stiffness Swelling - 11/7/2011 9:48:00 PM

MistressDarkArt

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GH-
I had a student with symptoms similar to yours in my clinic. She was at her wit's end, and so were we until we finally knew where to look when her eyes turned yellow. She had Hep B without a clue how she could have contracted it. She didn't use IV drugs and was married and monogamous. Turns out she had a cheating fucking IV drug user husband who gave it to her.

I hope this is not the case for you...but if you haven't been tested for the various Hep incarnations yet it would be worth it to get a baseline.

Wishing you health!

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RE: Unable to Diagnose Pain Stiffness Swelling - 11/11/2011 5:07:29 AM

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Thnaks MistressDarkart ---

Will check that out. Good news and bad news yesterday from my Mayo rheumatologist. After consulting with the doctor who looks for rare diseases and both looking at a week's worth of day and night photos I took of my feet and hands and a log of my swelling and pain, my rheumatologist believes it's more on the fibromyalgia side than anything else. The rare diseases doctor, who is also a rheumatologist (apparently, all my symptoms fall under rheumatology auspices there), suggested that if I wanted to pursue things there were about four tests, some of which are invasive, that they could do (I was told what they are and what they might show, but my brain could not absorb it all; they 're sending me a letter about it).

I finally asked my rheumatologist if I were his wife, daugher, sister, what would he recommend? He said he felt is was on the fibro line and to follow up on losing more weight, eat right (which to me means raw vegan), daily aerobic exercise (an anti depressant if i need it and pain meds if wanted/needed). He said to follow up with him in a month and call sooner if I needed him.

Well, in a way, I'm glad they don't think I have any life-threatening disease, yet, I still find fibro a somewhat strange conclusion. I have a relative who has fibromyalgia and she has bouts of it which come and go. I have essentially had it for 8 months straight with only several short intervals of little pain or swelling (a few rare days of none). I'll carry on...that hep b might be interesting....although I did not have sex with anyone for years before my symtptoms started. Thx again all of you....be well...

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RE: Unable to Diagnose Pain Stiffness Swelling - 11/11/2011 11:50:04 AM

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Fibromyalgia, they are discovering will present differently in different people. Eight months ago, was there something particularly stressful that was going on? That one trigger can cause things to have lasted. Why? Because it caused the initial problem which you have obviously been stressing about since. Stress and anxiety do NOT mix well with fibromyalgia.

Isn't it grand that the thing you least want to do because of the pain (exercise) is what they recommend? By the way, exercise doesn't work for everyone either. Nifty, ain't it?

If you can manage, try the exercise and see how it works for you. I have never heard of weight gain being involved with fibro, other than the possibility that more weight on your muscles/bones may make things a bit worse.

Even if you are againt anti-depressants and pain killers generally, for the time being, it might be in your best interest to get both from your doctor. The anti-depressants can help with the stress you have (even if it is subconcious and you can't figure out the stressor). Chronic pain will cause depression, which will worsen chronic pain. If the taking and anti-depressant for 2-3 months can get you over that hump, it will help in the long run. The pain killers can be helpful even if you only use them on the days things are REALLY bad, before or after exercise to help you through that portion.

I'm glad you have gotten some answers even if they seem incomplete to you right now. Progress is progress. Really fibromyalgia isn't that bad (insert sarcasism here). Ok, it can be really bad, but it can also be manageable.

By the way, a while back, Lockit had mentioned some supplement that she had tried, I honestly don't remember much about it other than it was vegetable and green, lol. She said it helped her a lot. Hopefully, she will find her way here and remind us what it was. I would search, but honestly, without remembering anything but those two things, it isn't going to do much good.

(in reply to gorgeoushair)

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