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Need some ST medical advice...what to do next

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KathyG

Jun 19, 12 11:54

Post #1 of 44 (2866 views)

Need some ST medical advice...what to do next	Quote \| Reply

I've had some medical issues since 2010 that has stumped the many doctors I have seen. I would like to know what's wrong with me and I with the rapid progression of involved joints I fear what the future holds for me. I want my old life back where I was able to swim bike and run.

I am unable to walk 2 miles now, riding my bike bothers my knees and my right hip (more so in upright on bull horns in the 9 to 1 o'clock position than in aero) most and my right shoulder has issues swimming and in aero. I have done an IM race each year from 2008-2011 with last two year struggle with this injury issue. What I have had seems to have progressed from a knee issue, to most of my major joints and is worse March through June the last 3 years. I get some overall fatigue, achy all over feeling during the Spring as well. When I walk I sort of waddle to avoid bending my knees and I can no longer keep up with my family just walking around speed wise. Both hips hurt right on top of hip bone but not nearly as much as my knees and it varies from day to day.

It started with knee issue, tore meniscus, had a scope found very inflamed angry synovium similar to PVSN without the grapes like formations. My synovium was thick not normal and surgeon peeled it away. I was treated for Lyme despite having negative Elisa (had 2 deer ticks on me), and I didn�t recover even with PT. Biopsy of inflamed snyovium came back 'inflamed'.

Within a year of scope I had 3 bone on bone spots 2 medially and 1 on my patella after having normal for my age cartilage the previous year. I looked at options and went to Brigham and Women�s Arthritis center to see if I was a candidate for ACI which I wasn�t. They offered High Tibia Osteotomy and Tubucular Tibia Osteotomy to realign my leg to avoid or put off knee replacement for a few years and have the possibility run. After I recovered from surgery, started to ease into training but in March had a flair up of both my knees and hips as well as my right shoulder continues to bother me since last September.

Now both my knees feel full and hard to bend. There is some swelling but not major and varies from day to day. The soreness is mostly on lower joint line on both knees but also on upper joint line of my knee. In March there were a few days I could barely walk at all and had to go up the stair on my hands and feet.

I was hoping someone here on ST may have some suggestions of tests, diagnosis ideas, or physician to see.

I am 50 and live outside of Boston. I have seen 5 orthopedic surgeons, 2 Rheumatologists, went to sports clinic, sports endocrinologist and 4 PTs. I'm scheduled to see another Rheumatologist tomorrow at Brigham and Women's who was referred by my Ortho who did my TTO and HTO in December. He suggested he needed to be a bit like Sherlock Holmes to figure out what is going on. He also had a case of angry synovitis that turned out to be Lyme a few weeks ago. I have had typical inflammatory tests all were normal, MRI of my knee twice, multiple knee x rays and x rays of my hips, bone density tests and endocrine tests Dec 2010-June 2011. All blood work is normal, X Rays don't show anything in my right knee, either hips and shoulder has slight impingement and early arthritis. I have been tested for Lyme 4 times but Elisa has been negative and no full panel Western blot has been done.

The surgeon that did my scope June 2010 is IM triathlete friend and she shared my synitivitis was one of the worst three she has seen in doing thousands of scopes. I've been told I have Lymes by one doctor and was on various drugs and antibiotics for 7 months in 2010 but other doctors say absolutely I do not have it. Last year saw Rheumatologist who thought I had something along chronic fatigue spectrum, a couple months ago I saw another who thought it might be hemochromatosis which it wasn't so he thought I just have osteoarthritis. Doesn't make sense to me or to my surgeon how rapidly it onset and why my synovium is so angry and unusual so I'm not sure that is right diagnosis either as I'm an outlier in to many ways. He wanted to blame it on doing Ironman races.

Other things that have changed recently that may or may not be connected...
7 months post op tibia isn't fully healed, Dr thinks from hardware allowing my bone to be lazy
I get cold easily even though I'm bit overweight
I have some memory issues mostly recalling nouns
My carpal tunnel in left hand has come back after getting it while pregnant with twins 24 years ago
Both my parents have been very ill last 3 years, my Dad has Stage 4 cancer and my Mom passed away last month

I am considering going to Mayo but it is hard to get an appointment.

I appreciate any suggestions or ideas. I'm struggling with not having any answers and things getting worse quickly.

If having more specifics about testing done, would help, let me know and I can add that information.

Thanks,
Kathy

(This post was edited by KathyG on Jun 19, 12 12:40)

kathy_caribe

Jun 19, 12 12:33

Post #2 of 44 (2809 views)

Re: Need some ST medical advice...what to do next [KathyG] [In reply to]	Quote \| Reply

Wow, Kathy. No ideas but it sure sounds autoimmune to me. Dry eyes, dry mouth at all? any rashes or lesions? I have to assume you've had RA and CCP testing along with ANA and the autoimmune panels. Any hits there? ANA should be the most sensitive and will light up even when drug induced... Hope someone has an answer for you.
http://harvestmoon6.blogspot.com

KathyG

Jun 20, 12 6:01

Post #3 of 44 (2654 views)

Re: Need some ST medical advice...what to do next [kathy_caribe] [In reply to]	Quote \| Reply

I have had ANA and other tests but everything tested in normal range back 12-18 months ago. Perhaps he will order that they be redone.

My husband works with an epidemiologist who suggested I have had an auto immune response to Lyme.

Both our dogs test positive for tick born diseases.

TriBeer

Jun 21, 12 15:45

Post #4 of 44 (2553 views)

Re: Need some ST medical advice...what to do next [KathyG] [In reply to]	Quote \| Reply

Was hoping you received some ST wisdom here!

Let us know how it goes. Hope you feel better soon. I'm 53 and can relate to the body not working like it once did.

Have a good weekend. :)

RockyMtnChic

Jun 21, 12 16:58

Post #5 of 44 (2491 views)

Re: Need some ST medical advice...what to do next [KathyG] [In reply to]	Quote \| Reply

Anyone suggest or test for MS? Not sure what all the symptoms are or if you have any of them, but have had 2 friends recently get the diagnosis, so I throw it out there.
************************************************************************************
Harry: "I expected the Rocky Mountains to be a little rockier than this."
Loyd: "I was thinking the same thing. That John Denver's full of shit, man."

Cheesy Bottom

Jun 21, 12 16:58

Post #6 of 44 (2490 views)

Re: Need some ST medical advice...what to do next [KathyG] [In reply to]	Quote \| Reply

First, I am not a doctor of any sort, just a goofball that has consulted Dr. Google on many, many things.

These are possibly long shots, but it sounds to me like autoimmune / inflammation, maybe (probably not, but maybe) some sort of toxic overload thing.

Check out the info on avoiding inflammatory foods - think wheat and dairy and the like. I am not an expert in this area at all, and don't watch out for any of these sorts of things, but I am familiar with people that have had good success with it.
Reduce and change all your clothes washer detergents to the most boring stuff that has no scents, is probably a powder, and use half as much with extra rinsing.
Possibly change all bedding (you spend a lot of time in bed, anything you are allergic to there is bad - I had a massive reaction to a new pillow once)
Carpeting? Some say get rid of carpeting, as it houses a lot of dust, dust mites, chemical off gassing, etc.
New Furniture? Stop buying it - some say new furniture has loads of chemicals in it.
I just heard of a UV light that can go into your HVAC ducts to kill airborne mold as air gets cycled through your heating/AC (about $700 or so).
Speaking of mold, check the attic - any mold up there? Get it taken care of.

Now after all that, it might be none of those. But if I were feeling the way you sound, I would start looking at anything.

KathyG

Jun 21, 12 17:20

Post #7 of 44 (2455 views)

Re: Need some ST medical advice...what to do next [RockyMtnChic] [In reply to]	Quote \| Reply

RockyMtnChic wrote:

Anyone suggest or test for MS? Not sure what all the symptoms are or if you have any of them, but have had 2 friends recently get the diagnosis, so I throw it out there.

I haven't been tested for MS or had any doctors talk about that.

Did your friends have issues long before they were diagnosed?

Thanks for the idea...

KathyG

Jun 21, 12 17:34

Post #8 of 44 (2430 views)

Re: Need some ST medical advice...what to do next [KathyG] [In reply to]	Quote \| Reply

Yesterday's appointment didn't come up with anything.

I saw Rheumatologist at Brigham's Orthopedic and Arthritis Center. He didn't come up with a diagnosis but ruled it out as auto immune. No solid evidence other than synovium jacked up that it could be auto immune. He tried to biopsy some fluid out of R knee and nothing came out but he did give me steroid injection. He thinks it could be around my joints not in my joints. He referred me to a Physiatrist...only highly motivated folks get to go. Asked about going to Mayo and he said no reason to go as I was well worked up here. He is going to test me for Celiacs but no other blood work. I had some antibody studies done 12-18 months ago and many of the auto immune things show up in blood work years before symptoms and mine were all negative. He thought I have some fibromyalgia symptoms but not a text book case. Most active people don't get it. Perhaps with less activity or basically none for last 7 months things are worse.

Both knees and right hip seem to catch at times. I wonder if my synovium is like my left knee was and the overgrowth catches when I move in certain ways. Pain is intense but very brief.

Thanks for the ideas~

mjengstrom

Jun 21, 12 17:45

Post #9 of 44 (2414 views)

Re: Need some ST medical advice...what to do next [KathyG] [In reply to]	Quote \| Reply

Sorry to hear about your troubles. Sounds frustrating.

I wouldn't give up on Lyme as a possibility. I have heard that many people can test negative and still have it. I have also heard that treatment can sometimes take many years, especially if you have co-infections. My brother is going thru this now and I am just starting to learn about it. The symptoms of Lyme can also be similar to other diseases like ALS, MS, etc. which can make it harder to diagnose. I don't have a lot else to offer, but I would still explore this as an option. You may need to find a Lyme friendly Dr. Also. Not all are. Google chronic Lyme for more info.

Good luck. I hope you find the answers you are looking for.

Jan de Visser

Jun 21, 12 18:50

Post #10 of 44 (2369 views)

Re: Need some ST medical advice...what to do next [KathyG] [In reply to]	Quote \| Reply

KathyG wrote:

RockyMtnChic wrote:

Anyone suggest or test for MS? Not sure what all the symptoms are or if you have any of them, but have had 2 friends recently get the diagnosis, so I throw it out there.

I haven't been tested for MS or had any doctors talk about that.

Did your friends have issues long before they were diagnosed?

Thanks for the idea...

No harm in checking, but as far as I know the initial symptioms of MS are way different. Now, if you would tell me you had balance issues without being drunk, or vision problems, then yes. The stuff you list, not so much. MS is a neurological disease, not an endocrinogical. But again, I am not a doctor, just the son of an MS patient.

Good luck. Sounds aweful.

Formerly known as Chipmunk

Richard Izzo

Jun 21, 12 19:19

Post #11 of 44 (2312 views)

Re: Need some ST medical advice...what to do next [KathyG] [In reply to]	Quote \| Reply

Kathy,
reach out to Dr. Joe Bariscano who is one of the foremost Lyme and infectious disease docs around. There are many tick borne disorders that like Lyme disease can cause systemic symptoms but do not show up as Lyme as they are from a different source.

Rich

rat23

Jun 21, 12 19:47

Post #12 of 44 (2273 views)

Re: Need some ST medical advice...what to do next [KathyG] [In reply to]	Quote \| Reply

Wow, so many negative test results in spite of many symptoms. Is there any permanent hardware in your leg? If so, what kind of metal is it?

I am allergic to titanium. Learned this the day after my wedding. Bought a titanium wedding band and woke up with a hard to locate pain in left leg. My whole left leg just ached from ankle to hip. Also had a bad headache. Initially I thought this was from too much champagne and dancing. Later in the day, got this weird metallic taste in my mouth. On the airplane ride to our honeymoon, I took the ring off and all symptoms disappeared in about an hour...and never came back. Bought a new wedding band made of gold.

Incidentally, years prior my chiropractor told me story about a surgeon who's arm went numb and he could no longer operate. After exhaustive medical tests, all negative, the surgeon went to my chiro. After interviewing the surgeon and doing muscle testing, discovered he'd had a titanium post implanted in a tooth that caused an allergic reaction. At his own expense, the surgeon had the post replaced with a different material and feeling immediately returned to his arm and he went back to operating. Having heard this story is what prompted me to remove my wedding band on the airplane (athough it took a while to convince my wife I really had an allergy).

I shared my allergy experience with my own doctor and he chuckled. He did not test me for allergy, but agreed my symptoms checked out. He told me doctors often implant metal hardware in patients without an allergy test.

If I had titanium bolted to my knee, I imagine the pain and discomfort would be really hard to diagnose. I wish you luck in solving your issues.
Rich

oceanswimmer

Jun 21, 12 19:49

Post #13 of 44 (2265 views)

Re: Need some ST medical advice...what to do next [KathyG] [In reply to]	Quote \| Reply

KathyG wrote:

I don't know that much about Lyme's, other than it can cause some really strange symptoms (as can the medications for it). I've known a few people who have fibromyalgia and some of your symptoms do sound a lot like that. Of those that I do know that have it, most had another condition or two as well.

KathyG

Jun 22, 12 6:16

Post #14 of 44 (2164 views)

Re: Need some ST medical advice...what to do next [rat23] [In reply to]	Quote \| Reply

rat23 wrote:

Wow, so many negative test results in spite of many symptoms. Is there any permanent hardware in your leg? If so, what kind of metal is it?

I am allergic to titanium.
Rich

Rich,

Yes in my surgery December I had a plate and 7 or 8 screws that are titanium in my leg. Symptoms started before surgery. I do have an IUD and that fits more in line with when symptoms started.

TriBeer

Jun 27, 12 14:53

Post #15 of 44 (1998 views)

Re: Need some ST medical advice...what to do next [KathyG] [In reply to]	Quote \| Reply

Is it the titanium?

KathyG

Jun 27, 12 15:12

Post #16 of 44 (1975 views)

Re: Need some ST medical advice...what to do next [TriBeer] [In reply to]	Quote \| Reply

TriBeer wrote:

Is it the titanium?

Yes both plate and screws are titanium.

Record10Carbon

Jun 27, 12 15:19

Post #17 of 44 (1957 views)

Re: Need some ST medical advice...what to do next [KathyG] [In reply to]	Quote \| Reply

I am going to give you the best advice that you will ever get on Slowtwitch.

DO NOT USE SLOWTWITCH FOR MEDICAL ADVICE.

Seems that you have run the mill of Med folks. I hope you find a solution to the issues at hand - I find it hard to believe that you have seen so many Ortho and Rhumo and not got answers. That being said the internet will not heal you.
----------------------------------------------------------

What if the Hokey Pokey is what it is all about?

Allie

Jun 27, 12 15:23

Post #18 of 44 (1939 views)

Re: Need some ST medical advice...what to do next [KathyG] [In reply to]	Quote \| Reply

Kathy,
I know you said you had seen an endocrinologist (more than one) but I cannot remember if you mentioned any TSH values. I am sure they drew them, but I must have missed that in the reading of that first post.

Also, B12 levels? Some neurological symptoms can be present with malsorption issues and B12 (lack of Intrinsic Factor)...specifically neuropathies (burning and pain).

You didn't mention Lupus...ELISA and Sed rates are usually elevated with that, but they have not done a full panel for that autoimmune functioning yet according to what I just read I think..

Keeping plugging away at it, you will get answers and it sounds like you have people that are willing to help you find them. Best of luck!

TriBeer

Jun 27, 12 15:23

Post #19 of 44 (1939 views)

Re: Need some ST medical advice...what to do next [KathyG] [In reply to]	Quote \| Reply

Basically, I'm curious if you've found any answers from your doctors.

Fred D

Jun 27, 12 15:23

Post #20 of 44 (1938 views)

Re: Need some ST medical advice...what to do next [KathyG] [In reply to]	Quote \| Reply

Quote:

. I do have an IUD and that fits more in line with when symptoms started.

Copper IUD Or Mirena?
If its copper it could relate to Wilson's disease.

That's pretty rare though....

~~~~

2010 Specialized S-Works Roubaix'
2012 Specialized S-Works Shiv

(This post was edited by Fred Doucette on Jun 27, 12 15:24)

Record10Carbon

Jun 27, 12 15:25

Post #21 of 44 (1931 views)

Re: Need some ST medical advice...what to do next [Fred Doucette] [In reply to]	Quote \| Reply

why would a 50 year old female have an IUD? I can not imagine it is Mirena.
----------------------------------------------------------

What if the Hokey Pokey is what it is all about?

Fred D

Jun 27, 12 15:27

Post #22 of 44 (1926 views)

Re: Need some ST medical advice...what to do next [R10C] [In reply to]	Quote \| Reply

R10C wrote:

why would a 50 year old female have an IUD? I can not imagine it is Mirena.

Mirena is used for regulation of abnormal bleeding, not just contraception. Copper would be primarily contraception.

Again Wilson's is highly unlikely.

~~~~

2010 Specialized S-Works Roubaix'
2012 Specialized S-Works Shiv

Fastyellow

Jun 27, 12 15:28

Post #23 of 44 (1922 views)

Re: Need some ST medical advice...what to do next [KathyG] [In reply to]	Quote \| Reply

Where's "House" when you need him!!??

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TriBeer

Jun 27, 12 15:31

Post #24 of 44 (1914 views)

Re: Need some ST medical advice...what to do next [R10C] [In reply to]	Quote \| Reply

"why would a 50 year old female have an IUD?"

There are some things you don't understand. . . .

Record10Carbon

Jun 27, 12 15:31

Post #25 of 44 (1914 views)

Re: Need some ST medical advice...what to do next [Fred Doucette] (Deleted by R10C) [In reply to]

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