Asking for diagnosis

[jamesnmlaw]

My wife, Lynn, has not been able to stand since May 28th after feeling like she turned an ankle. The next morning, she could not put weight on that foot.

Interestingly, the pain does not stay in the same leg. Nor does the pain stay in the same place in either leg. The pain will sometimes be in one leg, both legs, sometimes in one ankle, sometimes both ankles. Sometimes on the top of one foot and in the knee of the other leg. Never goes above the knee on either leg. Sometimes the painful area is swollen, sometimes warm to the touch. Sometimes a distinct skin color difference, say between the top of the painful ankle and the lower part of the same leg – a very demarcated, almost straight, horizontal line across the top of the ankle with the leg looking a normal color and the ankle/foot red, sometimes with white spots. So much pain that just putting a hand on the pained place causes her to scream. Even after +90 days.

She’s had similar episodes over the past 10 yrs. The first few lasted but a day or so, then some lasting for a week, then some for a month, and now this episode going into the 4th month. She’s toughed them out but this episode is not ending and she is weakening.

We’ve been to urgent care, x-rayed, told nothing broken, see your MD. MD scheduling for February.

Lynn had an orthopedist who did a little work on one ankle that Lynn had broken 40 yrs ago (punk skater from back in the day). The ortho had scraped the talus to stimulate/simulate cartilage. The ortho only said his work from 2019 looked well, you just need PT. This from a guy who spent 45 minutes 3 yrs ago counseling Lynn on ankle replacement surgery.

Lynn is a 2x breast cancer survivor and taking Tamoxifen. We saw her oncologist the first of August and he took her off Tamoxifen, did a Doppler, and found a surface blood clot. Now she’s on Xeralto. This was after Lynn was bed-ridden for 7 weeks. I felt like the oncologist wanted to tell something more.

I cajoled her PCP to at least do some blood work. All tests were normal but ANA came back positive. PCP referred Lynn to a rheumatologist. There's an appointment available in early-April. Will her PCP order other tests to confirm RA or some other autoimmune disease? Nope, have to go thru the rheumatologist, maybe in April.

We’re in a medical service provider wasteland. I feel like I need to do something drastic and dramatic to just get someone to give a damn.

This can’t be mechanical as the pain moves around. Electrical? Toxin? Cardiological? F’ me, I don’t know. I’ve taken a few classes at internet medical school but am lost.
I’m asking for ideas, please. Send me a PM if you feel more comfortable. Please, I ask everyone about this matter. I’m now asking you.

[Bill Douglas]

Both legs? Could it be a sciatic nerve/spinal situation.

[javadog]

When my wife had a problem that the local doctors couldn’t get there heads around, we went to the Mayo clinic.

Pretty sure they have one in the Phoenix area.

[LWJ]

No idea. But, can you BEG the oncologist to discuss hypotheticals with you?

That sounds like a hint.

[pwd72s]

Originally Posted by Bill Douglas

Both legs? Could it be a sciatic nerve/spinal situation.

May be worth adding a neurologist to the list...

[Crowbob]

“This can’t be mechanical as the pain moves around. Electrical? Toxin? Cardiological? F’ me, I don’t know. I’ve taken a few classes at internet medical school but am lost.
I’m asking for ideas, please. Send me a PM if you feel more comfortable. Please, I ask everyone about this matter. I’m now asking you.”

Do some research on Somatoform Disorder.

[john70t]

Originally Posted by jamesnmlaw

Sometimes a distinct skin color difference, say between the top of the painful ankle and the lower part of the same leg – a very demarcated, almost straight, horizontal line across the top of the ankle with the leg looking a normal color and the ankle/foot red, sometimes with white spots.

No idea but that stood out as vascular first as it's only in the lower legs.

The extreme and traveling pain sounds like nervous system.
(such as lack of ankle cartilage, clot, pinched nerve, toxic buildup, other is setting off a wild localized nervous system response)

Lower lumbar/pelvic nerves can affect both legs.
(injury, pinched by bone loss, cyst, other such as hyper-inflated bladder,)
Bone density in older women can lead to small fractures and possible tendon tear.
The symptom is not always the cause in medicine and mechanics.

Any change with stretching or exercise? Feet elevated? Fetal curl position? Hot/cold compresses? Fluid intake?

[Baz]

Originally Posted by javadog

When my wife had a problem that the local doctors couldn’t get there heads around, we went to the Mayo clinic.

Pretty sure they have one in the Phoenix area.

Good advice.

Just today I had a conversation with a friend I hadn't seen in several months. He said he is recovering from spinal cord surgery. Way up by his neck, somehow one of his vertebrae was constricting his spinal cord.

He was experiencing all kinds of numbness in his arms and hands and sometimes electrical shocks throughout his upper body (as he put it) when he moved a certain way.

He got a diagnosis from the Mayo Clinic.

Then he set about doing research on what doctor/surgeon to use for help.

Ended up with one from South Florida who practised the "least invasive methods as possible".

The procedure involved slicing the vertebrae in 2 places so it opened up like a door. The surgeon pried it open and they placed/wedged a piece of cadaver bone in the opening.

He had to go through some pre-surgery protocols ahead of the operation and of course post-op ones including wearing a collar plus PT.

The doc told him ultimately he'd lose up to 5% of his head movement range up and down. But he's doing pretty good right now. The operation was back in April. He and his wife rode their bikes this morning to the local coffee shop and then they did some paddleboarding in the Intracoastal behind us. He also went surfing yesterday with his son.

So yeah - maybe the Mayo Clinic for starters. Then find a good doc. They are out there.

[cstreit]

Totally unqualified opinion here, but when I had a transient leg pain that no amount of PT and other methods could resolve, ended up being my spine which is the collection point.

I feel your frustration. Don’t give up!

[Tobra]

I like the go to Mayo and talk to smarter doctors idea. If you have not already called them, today is Monday and they will be there all day.

Nerve impingement probably does not give you the color changes on the skin.

Toxin, maybe, but this is episodic over 10 years, doubt it is residual chemo effect, seen that give numbness forever, with all that entails, but nothing like this. Does Lyme disease act like that?

Complex Regional Pain Syndrome? All I can come up with that fits really, maybe after I drink a cup of coffee

[MMiller]

Originally Posted by javadog

When my wife had a problem that the local doctors couldn’t get there heads around, we went to the Mayo clinic.

Pretty sure they have one in the Phoenix area.

This! Driven past it many times while in Scottsdale.

[jhynesrockmtn]

Mayo asap. They have a fantastic capability with diagnosing complex cases. Best of luck. She sounds tough as nails but it is hard to fight when you don't know what you are fighting.

[Geneman]

sounds like localized transient, inflammatory response. hyperactive to. some stimuli originating elsewhere. likely nerves..... with those color changes , almost certainly cytokine mediated. when it occurs, is there fever?

[PorscheGAL]

CRPS?

[3rd_gear_Ted]

Another option instead of the Mayo is the Scripps Institute in San Diego CA.

[Billiam 911 2.8]

James, I concur with the advice of reaching out to the Mayo Clinic. I admire your efforts as clearly you love your wife very much.

[MRM]

I can't recommend Mayo Clinic enough. They follow the integrated health care model, which makes all the difference. It would be unheard of you to fall through the cracks at a Mayo Clinic they way you are now because every doctor is connected with each other. I'm local to Mayo's main campus and we do an executive physical with them yearly. They've caught two issues that don't affect my health today but would have drastically shortened my life if they hadn't found them. Think silent killers.

True story: About ten years ago I was handling a court trial (no jury) in Miami. Since there was no jury, we were able to chat together a bit. When we were chatting one evening, the judge told her remarkable Mayo Clinic story. The judge was married to a very prominent personal injury attorney who had been diagnosed with an inoperable brain tumor a few years earlier. He went to the best doctors in Miami, got second opinions, and everyone told him to go home and put his affairs in order. The guy was less that 50 years old at the time. One of their friends recommended they get reviewed at Mayo Clinic. They didn't think anything would come of it, but since they didn't have anything to lose, they looked into it.

Mayo has a system for taking patients who self-refer. You go on their web site, fill out the right forms, send in some authorizations, and someone sets you up for the appropriate in-person consultation. They got set up for a two day visit. Mayo's strategy is that you're assigned to a specific doctor who is your medical coordinator. He follows you wherever you go. You meet with him for your initial evaluation, then you get sent to the individual specialists, scans and tests as the care coordinator directs. So you bounce around from floor to floor and building to building, each time seeing someone who is expecting you and has read your full file, because they're all in the same system. At the end, you go back to your care coordinator who tells you your treatment plan. So the judge and her husband met with their coordinator who took their medical records and tried to read his scans. The doctor just laughed and said he couldn't use their scans and needed to order good quality scans at Mayo. So for the next two days the judge and her husband traipsed through various departments at Mayo, getting poked, prodded, and scanned.

At the end of the second day they returned to their care coordinator for the final evaluation. They sat down all nervous, expecting to be told to make the most of the time they had left, as the doctor jumped right into his plan as though they already knew what he was talking about. He kept saying things like when you return, next steps, recovery time, and things like that. Eventually they broke in and said excuse me, but are you saying you can operate on the tumor? The doctor looked at them blankly and realized no one had gotten them up to date on the results (in all fairness, that's what he was supposed to be doing). He responded, oh, I though someone told you. Yes, this is totally operable. We just need to schedule you in. Amazed, they asked how this could be, how many operations like this had he done, and why the doctors in Miami thought it was inoperable. The doctor thought for a moment and explained that the tumor the lawyer had was very rare and that most doctors never see one like it, so they didn't know what to do with them. But, of the ones that are diagnosed, they all come to him. He said he did a couple operations like that a week.

So that's what they did. He got operated on as soon as they could schedule him in. He needed to stay in the hospital for chemo or radiation therapy for a month or two, then he had to return to the clinic frequently for more treatments, with declining frequency. It took almost exactly one year, but he completely recovered and even went back to practicing, without any cognitive deficit.

And the guy would have been dead if he hadn't gotten a second opinion at Mayo Clinic. There's a reason why Saudi sheiks fly across the world to visit Mayo Clinic in Rochester, Minnesota.

[javadog]

That’s the Mayo facility my wife went to, I can’t recommend it highly enough. It was absolutely unreal, the quality of care they give. She had many appointments and we never waited for a single one of them. On time, every time. At the end, she was given her marching orders and never had to look back. They had a plan, she followed it, and that was that.

I don’t recommend that you go there in January, as we did when it was 20 below zero, but it’s a world-class operation.

[LWJ]

MRM, Thanks for the Mayo advert. I filed it for when I need it.

[jamesnmlaw]

So, here we are. Lynn hasn't walked since May 28th. Radiology finds:

MRI of Left Ankle / Foot
Interval progression of the lateral talar dome osteochondral lesion (Stage II)
Moderate to severe tibiotalar osteoarthritis
Moderate to severe forefoot and midfoot osteoarthritis, greatest at first MTP joint
Mild peroneal tenosynovitis
Complete ATFL ligament tear
Complete deltoid ligament tear
Complete calcaneofibular ligament tear
Moderate grade spring ligament sprain
Diffuse generalized muscular and soft tissue edema
Moderate tibiotalar joint effusion with synovitis


MRI of Right Ankle / Foot
Moderate forefoot and midfoot osteoarthritis
Small tibiotalar, posterior subtalar, first metatarsophalangeal, and first interphalangeal joint effusion w/synovitis
0.6cm medial talar dome osteochondral lesion with a small cartilage defect in the adjacent tibial plafond
Borderline thickening of the proximal central band of the right plantar fascia (possible plantar fasciitis)
Mild right Achilles tendinosis
Diffuse subcutaneous, muscular, and superficial facial edema
Mild to moderate generalized muscular fatty atrophy

We're just back from visit with PA at orthopaedic. Suggested that physical therapy and walking in a swimming pool is the remedy. I asked about the 3 or 4 complete ligament tears and was told that we all have complete ligament tears in our ankles and those are not an issue. Was told that the missing cartilage was not an issue. PA stated the completely torn ligaments and the missing cartilage will not prevent walking.

We've seen a rheumatologist who said that the arthritis will be diagnosed but is probably uncurable though manageable. Understood and accepted.

I seek a magic cure. Cadaver ligaments? BioCartilage?

Thank you.