3 doctors diagnosed RSD, now PT thinks TOS
 

I've had 2 neurologists and 1 rheumatologist diagnose RSD type 1 in my left arm. I have a history of RSD, eight years ago. Now my physical therapist told me he suspects a shoulder injury (probable torn rotator cuff) coupled with TOS, and maybe not RSD. Another possiblity is that I have a shoulder injury and that shoulder injury caused the RSD. I have psoriatic arthritis, so a shoulder injury is possible.

He wants to do a MRI of my left shoulder. Beyond the pain in my shoulder, he thinks the arm pain is more specific, and less diffuse than the pain seen in RSD. I have pain throughout my entire arm, but it hurts more on the forearm, and less on the outside of my arm. My pain is diffuse, but I explained what I felt at the current moment, and that can change from second to second. Right now, the top of my arm does hurt. He said he usually sees more pinkish discoloration. My discoloration tends to come and go and wasn't as bad as when I was in PT. My discoloration is also more blue and purple, than pink. And my forearm is more discolored (probably because it's paler so more visible) than my upper arm.

As people here know, the diagnostic process is so frustrating. I've finally made some progress, so for my PT to now tell me he thinks it may not be RSD, is frustrating. Anyone have advice? Are there any important distinctions between TOS and RSD? I have no numbness and tingling and my fingers are spared, though I have burning on the front part of my hand. I have constant pricking sensations like needles being poked into my skin or polyester being rubbed on a raw sunburn. I have hypersensitivity that worsens the burning sensations. Cold (especially cold water) increases the burning.

The EMG and nerve conduction tests were normal, but showed a mild abnormality in nerve conduction time that the doc attributed to the colder temperature in that arm. There was about a 5 degree celsius temperature difference between extremities.

I don't think I have TOS. I think I could have a shoulder injury and that caused the RSD, but I don't think I have TOS. I'm not a doctor though.

It's important to note, this was my first visit with the PT.

In the symptoms you listed, to me you have RSD. My foot turns black and blue also and comes and goes. I have the burning pain and sensitive to touch. If you have had 3 dr.'s tell you its rsd then you got rsd.

On the other side, it is possible to have TOS with RSD so don't rule out the possiblity of having both.

It is very frustrating I know to have some say you have it while others disagree. My therapist kept sending notes to my dr. stating something was not right she could not even touch my foot without me crying. (she was unfamiliar with rsd and at this point I had never heard of it) He ignored it. It wasn't until I saw a podiatrist did I get the dx. of rsd.

I was also told i had TOS so I had the surgery to fix it but it turn out that i was RSD all along so be carefull

I've had RSD 10+ years, and had surgery a few years after the diagnosis to make sure there wasn't a structural issue, AND only FINALLY lost all doubts to other issues since a Ketamine infusion took away ALL of my swelling for a few weeks. My wrist had just never felt "normal" in all those years, and I've had most RSD issues, but I don't present as a "classic" RSD patient in some ways.

It sures sounds like what you are experiencing is RSD. Having an MRI seems like a great idea just to be safe, since it's non-invasive. Color and temp changes can come and go, which is difficult when they don't happen in front of your doc. Make sure it's documented when it DOES happen in a docs office, and start taking pics as well! Of the RSD side and the healthy side, for comparison.

Well...I have to say that if your PT knows anything at all about RSD then they would know that there is no "textbook" RSD case. The exact effects and the way the symptoms present varies so much from person to person. Not that I'm saying to reject their opinion out of hand...I would probably follow up with your treating doctor about it and get their opinion (as alt said...you could have both). But seriously...for someone to have such specific ideas about how your RSD should present and on only the first visit...those would be red flags for me personally that they do not know what they are talking about (at least so far as the RSD goes). Might be an excellent PT but maybe should leave the RSD diagnosis to those who understand it better. I would still follow up on the tos though with your treating doctor just to be safe though.

If the PT was suggesting something invasive, it would be more worrisome. It seems he might have an idea that is worth pursuing. I may be in the minority, and it can be an emotional roller coaster dealing with other non RSD ideas, but if there is a contributing factor to the RSD that can be helped, that would be great, right?

I've had two amazing (out of a dozen or so) PT's. One I saw for only a single appointment, looked at how I was holding my arm, and he did something chiropractic like that helped relieve 75% of the issues in my shoulder that had been bothering me for greater than a year. Another figured out my lower back issue (a very specific stetch and massage) after a year of docs offering meds and potential surgery.

I've also had internal stitches torn in my knee during "no pain, no gain" therapy from a VERY respected PT that was an idiot.

Should a PT be diagnosing? Probably not. Might he recognize an issue a doc or even several docs have missed? Possible, IMO.

Having one primary doc that is open to new ideas, makes it easier to cope with this kind of stuff. If you can keep positive without getting your hopes up too much, that's best... Craziness, I know. :)

If you haven't had an MRI yet , it would be good as a check & to rule in or out any obvious structural issues.
TOS doesn't usually show up on MRI either , unless there is a extra cervical rib or some other anomalies that are compromising/impinging the nerve or vascular system in the collarbone, neck, shoulder areas.

I've found some advanced PTs are better at seeing the body as a whole and seeing postural or anomalies that drs miss..
Same for expert chiropractors.

I don't know if you've read on our TOS forum at all , but you can find all the symptoms most of us have.
http://neurotalk.psychcentral.com/showthread.php?t=5618
http://neurotalk.psychcentral.com/forum24.html

In the past quite a few w/ TOS eventually acquired RSD also after many years.

This topic is very complicated. PT's have a better feel for what's going on since they see you 2 or 3 times per week over weeks or months; your doc might only see you 2 or 3 times. But then traditionally, PT's are not trained in diagnoses, differential diagnosis, lab or radiographic diagnosis. They are trained to "assess" a problem from the perspective of implementing a therapeutic protocol. But that doesn't mean they are wrong with their thoughts.

As far as TOS, there are numerous shared physical findings. I wouldn't want to make the mistake of going thru a first rib resection for TOS when it was really RSD where more surgery might send you to a new level of uncontrolled pain. There are several tests that help steer a diagnoses towards TOS; EMG, NCV, SEP, arteriogram with the arm abducted. TOS affects the neurovascular bundle so both systems can be affected. For RSD, you can get into triple phase bone scan, thermography as well but as you probably know, there isno specific test for RSD.

I talked to my neurologist after I spoke with my PT and on the basis of my EMG, nerve conduction studies and temperature studies, she says she's certain (or as certain as you can be about RSD) that it's RSD; not TOS.

There's no evidence of TOS on my EMG or nerve conduction. My temperature studies (not thermogram) comparing the two arms show a definite temperature difference. My neurologist says she has no doubt that it's RSD and doesn't think it's TOS at all.

Of course, I could still have a shoulder injury that caused the RSD. I still haven't heard back from my PT or my rheumatologist whom my PT was calling to get him to schedule a MRI.

I have psoriatic arthritis, which is an inflammatory arthritis similar to rheumatoid arthritis. My neurologist thinks the psoriatic arthritis caused the RSD. My rheumatologist disagrees. I agree with the neurologist. I'm not sure they'll find any specific shoulder injury if they do a MRI, besides the psoriatic arthritis. I have no specific incident during which I remember injuring my shoulder.

I would agree that a PT could know more than a doctor since they spend more time with patients, but this was my first visit with this PT. I've been seeing my rheumatologist for 10 years. He diagnosed my first case of RSD. And I've seen my neurologist for 2 years.