MRI report--good but am a little uneasy...

Help...I need to be able to accept a 'good' report and stop questioning...My
MRI of my shoulder came back indicative of an abnormal AC joint suggestive of inflammatory arthritis, possibly rheumatoid. There was abnormal signal intesnsity of the distal clavicle and medial acromion, showing decreased signal on T1____signal on T2. There were also cortical erosions and subcortical cystic changes seen in the clavicle. Also, there was soft tissue thickening and fluid seen within and surrounding the AC joint, and ter was soft tissue enhancement and assciated marrow enhancement following contrast administration.
The findings were most compatible with inflammaotry arthritis of the AC joint typical for rheumatoid. Low-grade infection can have a similar appearanance.
"This is not the typical appearance of tumor/metastatic disease.'
That sounds wonderful to me--but can they rule out shoulder or other mets for sure? One thing, they did not include my upper arm in the MRI--that has hurt just as much as the shoulder and sometimes more. I have none of the usual signs of rheumatoid arthritis--no warm area, no stiffness, no fever, no swelling, no redness. I have no difficulty in the morning--generally bouncing out of bed like a kid. However, I have one of the more common reported symptoms associated with mets--it hurts more at night.
I was told that most of us have some inflammatory changes. I certainly wouldn't argue against that. However, I have had sudden, daily pain for one week short of 3 mos. It started after light gardening and there is no sign of injury.
The report did state that it wasn't the typical appearance of tumor/metastatic disease---definately a good sign if true; however, could the prophylactic
Celebrex that I have been on for a year and/or the 3 Zometa infusions somehow contribute to whatever is there NOT having the typical metastatic disease appearance.
The discomfort first began one year ago--yesterday. I noted the date and remembered it because it was Halloween. I started taking the Celebrex for the first time about 9 days later at 100 mg/twice/day. I doubled that dosage one month later and was at that level until a month ago when I then again doubled that to 800 mg/day. I had my first osteoporesis control infusion of Zometa in
January. I had my second one in July and a 3rd one 3 weeks ago. In addition I had a shot of cortisone to the shouder 4 weeks ago. Could the cortisone also affect the results?
My concern is possible bone and/or spinal mets. I began having lower back pain either before or soon after dx. 6 mos. after dx, I had a normal MRI. About 18 mos. later a bone scan, which previously did not show this began to show increased activity in the L4/L5 areas. A PET scan 8 mos. later showed the same and stated that MRI should be done if there were symptoms. There were symptoms but no MRI was done. Then 8 mos. later I developed sciatic pain. Then an MRI was done that showed either a cyst or mass. A month later another MRI was done that showed something in the cervical area (neck) and said more should be done if there were symptoms. Three mos. later I experienced shoulder pain. An x-ray was ordered. I was told it was normal. I then called oncologist who said it showed a bone spur and that more x-rays should be ordered of the cervical area. I was told that showed degenerative changes. My oncologist referred me to physical therapy. Since both my upper arm and shoulder continued to hurt -- quite severe at times-- and still had not heard from P.T., although had started a statin drug. Within a week or two, the pain was a little less, but still hurt, primarily aching in the upper arm or shoulder---generally not both simultaneously at night. It seems the upper. I called my regular dr. who recommended a cortisone shot. I had that. It took the edge off. 5 days later a patch on the upper forearm of that arm went numb and my hand cramped into a claw -like position ('charlie horse' for about a minute. The numbness didn't remain. I develped the numbness a few other times which was accompanied by sharp tingling sensation in a few of the fingers on that hand. This is the arm I DON'T have lymphedema in. The following week--one week after cortisone injection--I had my 3rd Zometa infusion. That seemed to help a bit.
I also have other weird neurological symptoms--occasional sharp tingling in both feet, a band-like sensation around my back (spinal cord?), sometimes when lying down, sometimes when hit with water in the shower. I have occasional discomfort in lower neck--(top of spinal cord?). A few days ago, I started getting weird, almost dizzy-like sensation when going from lying on my back to getting up. It doesn't happen when I lie on stomach or get up from chair. It is almost like being off-balance or what one feels on a ship.
I forgot to mention, it hurts when I lie on my shoulder--either on my back or stomach--so I find myself sleeping on the opposite arm-the one with lymphedema.
I don't have these problems for the most part during the day.
I hope it isn't mets. I wonder if the Arimidex might cause arthritis. I know it can cause discomfort similar to that--but wonder if it actually causes arthritis. Again, I don't have the stiffness that tends to go along with it.
I guess I am uneasy because the findings supposedly corresponded most to rheumatoid arthritis, and I don't have symptoms of that. The symptoms I am having may be associated with mets, although there are other possible causes as well. I guess I am wondering if I am more at risk for developing mets or if the 'other' causes would be more likely than mets. My gut level reaction (and fear) is that there is a greater possibility of the former...
Anyone have any ideas that I haven't covered? Thanks in advance.

J wrote << MS can affect any part of the body. So your dizziness when rising could be from the
MS affecting the brain.
Get your BP checked, and checked for postural hypotension. They take BP when you're lying down and then immediately after rising. If that's okay, then it's probably the MS.>>

It ONLY happens if I am lying on my back. It doesn't happen if I am lying on my stomach or side. If due to blood pressure it would happen going to standing from sitting or lying. My husband has had that problem. This is not normal dizziness--it's like the room is tilted. It is weird. It is like my eyes are frozen in a certain image and not moving with the rest of my body. It could be a return of the benign paroxysmal positional vertigo. I know how to treat that (Throw myself on into the position that makes you dizzy and fixate eyes until stabilized which my neurologist taught me the last time it happened).
However, this is lasting longer--for almost a minute--feel like I am walking on a ship in rough waters. I guess it is a good sign that it clears up in about a minute. The difference is the pressure I am feeling at the back of my neck and lower head.
I am quite sure it isn't MS related--generally with that the type of dizziness is the spinning room sensation. This is different--much more intense--and actually knocks you over suddenly--like I fall back. I guess it could be a return of what I had before which is supposedly caused by crystals or calcium deposits in the inner ear.

Sandy wrote << Does it affect both the palm and the back of the hand? >>

<<Which fingers are affected? (Two patterns involve half of a finger.) >>Not quite sure, but ne time iI found the outside of my hand and side of pinky involved but that was first time I recall that. I am guessing it was two of the inner fingers but may have been three of them and pinky might have been involved. I know it wasn't all of them and am pretty sure thumb was not involved. Does it involve the forearm, arm, and shoulder, and if so, where? Are there simultaneous symptoms affecting other parts of the body or other organ systems, such as palpitations or respiratory difficulty? Some of these bits of information could be helpful in unravelling it all.
<< Does it affect both the palm and the back of the hand? Which fingers are affected? (Two patterns involve half of a finger.) Does it involve the forearm, arm, and shoulder, and if so, where? >>

Not the numbness--only a small area on the upper part of the forearm was numb, not the whole forearm and not the whole upper part. I am guessing it was about the size (and somewhat the shape) a little smaller than an egg--and am only saying egg because of its overall oval shape. <<Are there simultaneous symptoms affecting other parts of the body or other organ systems, such as palpitations or respiratory difficulty?>>
No, but can't recall if I was feeling the ache in the upper left arm. I should mention that when I went to see the internist (a new one since mine was out of town, she did an ultrasound of the carotid artery and an EKG because the pain was in my left arm and left shoulder. I should mention she was a young dr. and was doing this, I'm sure because it was the left side. I thought that was totally unnecessary but didn't tell her but then again, I could have been wrongm but t this time, however, I had not yet experienced any numbness or tingling in arm or fingers. That occurred almost 2 mos. later. <<Some of these bits of information could be helpful in unravelling it all.>>
Okay, when I awoke--when the alarm went off--I was lying on my side. I raised myself up from that side without a problem. (if I had been on my back and sat up,it would have resulted in the problem--going from lying down to sitting if on my back). I was sitting on the edge of the bed and started to look upwards
I think as I began to stand up. I didn't get more than a couple of inches off the bed when I felt like a violent force shoved me back down. I waited awhile and then got up. keeping my head straight,and didn't have that problem.
However, I then began stumbling with the balance problem as I started to walk out of my room to the computer--about 25 to 30 feet. During the night I had to get up and use the bathroom and also had same balance problem--like being on a ship in rocky seas. It doesn't happen going from sitting to standing but occurs after I have been lying down and if I then stand up after firs sitting--but not necessarily getting up too fast. I do think balance issue was less because Ihad been sitting there for about 30 seconds but am not sure of that since it still occured. I just tried looking up from the chair I am sitting on and didn't have the problem. As I am sitting here, I can look all the way around although when I turn my head to either the left or right the area just above or over the collar bone (but not the bone) hurts. Actually it barely hurts if I turn to the right, but that same area hurts when I turn my head toward the right to straighten it or turn my head to the left. Maybe that is just strained from sleeping on it. I can now turn my neck in all directions without a problem other than the mild discomfort on the right side just described. Yesterday I noticed, though that I had complete range of motion with my left shoulder with it hurting only a little in the shoulder with movement and then after I moved it in different position the residual discomfort--which has for the last several weeks been delayed--although still there was only very slight--just enough to be noticeable. The upper arm, which generally just starts aching. hurt less yesterday. I didn't do any driving during the day...hmmm. As far as the shoulder, this is ealy in the morning and it hurts more at night. As I stand up from sitting, no problem, and then start walking -- some mild discomfort in back of head in lower area--neck doesn't seem involved.
I have been up for half an hour now. I am going to go back to bed and experiment--only once though.
Okay, wow. Here's what happened, I went back on my bed and lay on my back and was okay for about 10 seconds and as I was lying there, in the dark, I got this very deep overwhelming sense of dizziness so I closed my eyes but still felt it. I turned to my right side and it began to subside. I got up from my right side without a problem but there was still that residual feeling. I was able to get into a standing position. I felt a little wobbly and then stumbled as
I walked for about a distance of 15 feet and then became more steady. This was over the course of about 2 minutes.
I guess the balance thing happens after lying down but think I might be able to avoid it if only lying on my side--but am not certain about it and don't have the time to experiment again at the moment.
The feelings are quite reminiscent of the benign paroxysmal positional vertigo but triggers are somewhat different. If that is the case, I woud guess that it is the location of the crystals in the ear that would be responsible--if that is what,in fact is and was going on, rather than some other cause that was missed...I just don't remember stumbling as much as I walked last time, if at all.

Sandy wrote << Some of these bits of information could be helpful in unravelling it all.

If it is in fact benign paroxymal positional vertigo--which similar systems were attributed to or suggestive of (although not pathologically determined), the first time it occurred was abou 7 weeks after I started Arimidex and 4 mos.
after my last chemotherapy (Taxotere and Herceptin) but was also still on
Herceptin and another long-term medication. Since that time I have added several meds and had the hysterecomy/oopherectomy.
We are going to have the brain MRI's re-evaluated. Mine are complicated by the
M.S. and reports stated that they are compatible w/M.S.--Swiss-Cheese-like, I am guessing. However, at time of first attack I had an MRI and since then but before this have had an additional 2. My HMO has a habit of just comparing two most previous scans rather than looking at several--so am requesting another reading outside HMO (and will pay out-of-pocket--ouch). Meanwhile, the private internist I saw asked to see copies of latest scans and still has them. He has consulted with others too. I haven't yet talked with him since giving him the films.
Sometimes when I bend my neck down I have a problem--or start to go into one but not a full-blown episode. It does coincide with head movement, and the only consistent position it occurs in is when I am lying on my back.

J wrote << http://tinyurl.com/tbng
See the "View Html" on the 3rd and 4th of this search result.

You have to weigh that versus the ATAC Trial update. http://www.breastcancer.org/ research_hormonal_120002a.html>>

Thanks for the response. I should have added that I am very aware of the associated arthritic-like difficulties that are often experienced on aromatase inhibitors. In fact at one time I did have some stiffness in my knees when getting up from being in a stationary position for any extended period of time.
That was BEFORE I started Celebrex. I would assume, although may be wrong, that would also take care of other possible arthritic activity and that if there was any break-through pain that it would be more likely to be unilateral.
The upper arm and shoulder pain that I am experiencing is very different than that.
Interestingly, the areas that showed up as increased uptake on the MRI and PET scans were the L4/L5 area of the lumbar spine and now the shoulder (although am not sure about the upper arm)--both two of the more common areas where bone mets are more likely to occur.
In addition I am experiencing accompanying neurological symptoms which range from numbness in forearm, tingling in fingers, tingling in feet and occasionally down entire left leg, and band-like sensation across back (spinal cord?). I have had neurological sensations with M.S. These are different -- much briefer but much more intense. My neurologist did not feel that they were M.S.-related.

severe symptoms of hyperventilation, but the onset seems too fast.for that. If you have more spells of numbness, try to map out the exact distribution:
Does it affect both the palm and the back of the hand? Which fingers are affected? (Two patterns involve half of a finger.) Does it involve the forearm, arm, and shoulder, and if so, where? Are there simultaneous symptoms affecting other parts of the body or other organ systems, such as palpitations or respiratory difficulty? Some of these bits of information could be helpful in unravelling it all.

Hi Sandy, thanks for the response. The numbness was one the upperside of forearm, just below the elbow--the area was a kind of diagonal, ovalish-shped area of about 1inch by maybe1.5 to 2.5 inches. The numbness lasted around a minute--the cramp (charlie horse) lasted several seconds (possibly anywhere from 10 to 30? seconds) . It was weird. It happened about 3 or 4 days after the cortisone injection. I was not doing anything in particular when it happened. It has happened twice. I have also had the same numbness and some of the fingers, not all of them developed a very sharp, tingling-like sensation for several seconds--before and awhile after the cortisone injection. I sometimes feel a burning like sensation on that part of the upper forearm. I have not felt anything on my palm. However, just a short while ago I felt a burning numbness on the side of that hand, partly down my little finger for several seconds. I am not sure. So far, the sensations seem to involve a combination of a few fingers, but not my thumb, and I am not sure if my little finger had been previously involved but that was the only one I felt just a short while ago. I am wondering if the bone spurmay be pressing on a nerve?
I am quite relaxed by the way. (Many years ago I did have an incident of hyperventilation following a weird reaction to a prescribed, experiemental neurological medication--4AP (or maybe it was 5AP)), <>
This is quite unlike what occurs for some with that reaction. Maybe dizziness isn't quite the 'right' word to describe, although there is definately a feeling similar to such. Nothing is spinning around. It is so very weird. It is like I am moving but the visual image did not change--and was frozen. The result is balance problems. It lasts for about a minute. It can happen if I am lying on my back and move my head to the side--without getting up. For the most part, it usually only occurs while on my back--not on my stomach--and still occurs if I raise my head slowly or turn it to the side. It creates a sharp sensation that literally causes me to stumble or knocks me over--just about.
Yesterday, after a walk, a friend invited me to her yoga class--decided to try it. I had forgotten all about this sensation until I tried to shift from a position on my back and had to turn my head. I avoided doing that. I was fine initially on positions that involved being more prone--with outstretched legs.
However, it occurred when I bent my head foreward.
It is similar to the benign paroxysmal positional vertigo that I experienced about 20 mos. ago, but that did not cause the extended balance problems I had while trying to walk after it happened. That feels like I am walking on a ship in very rocky waters.
I suppose I could try the treatment for that which involved throwing my head quickly to that position and focusing my eyes, but it is hard to throw ones head in an upwards position rather than down which I did last time.

<< Nothing jumps to mind, but I've printed these out and will see if I can spot any pattern in it.>>
I finally got a call from the orthopedist who ordered the MRI. He agreed--doesn't think I have rheumatoid arthritis although does think there is arthritic activity in shoulder area. I expressed my concern that MRI didn't include upper arm. He said it did include area where there usually are mets--if any are there. However, he said that he the MRI basically confirmed his feelings that what is going on is neck-related. He didn't specify--my thoughts am wondering if it might b a pinched nerve--although have no idea what that would involve.
I had put a call into my oncologist, too. I got a call back from the office that he wants to see me this week.
Since I have been up I have been okay. My arm ached before but have been way too busy to deal with it, and I haven't tried lying down again on my back--am almost afraid to do that.
Thanks again for your response.

Thanks for the suggestion--we are planning on checking further. We would like all or at least several of the scans re-read by an outside specialist. We are planning to consult with private neurologist I have seen (one of top in city for M.S.--interestingly, he was a classmate of neurologist I saw for 29 years through our HMO). This neurologist (one at HMO retired last year; my husband and I were in a longitudinal study he was in charge of when I was first dx'd. He was also my husband's neurology professor when he was in dental school). However, we did see a private one at time I had first major attack for a second opinion.
The new neurologist I am seeing, who probably wasn't even born at time I was dx'd with MS, does not feel that any of the neurological symptoms I am having are MS-related. I am inclined to agree since the MS has been stable and under excellent control with interferon beta which I have taken for the past 9 years.
The symptoms came on at around the same time the synovial cyst in the L4/L5 region of my lumbar spine was dx'd, and they don't seem to worsen with all the walking I am doing.
Currently, I am also seeing a private internist--after my sister bugged me enough (to get her off my back) who thinks I need to be out of the HMO system.
He has consulted with a private oncologist--who reviewed my scans--who feels that something has been going on all along.
To give a small example--first CT scan stated amongst many other things that there was a single 1.5 cm lesion in the liver, thought to be an hemangioma. A tagged red blood cell study was done to rule it out. It couldn't--said there was not enough resolution to do so in lesions less than 2.0 cm. No further assessment was done. Yet, my initial oncology clinical reports stated that an
MRI had been done. It never was. Then after having 3 unexplained acute attacks of pancreatitis, another CT scan was done which showed a 2.0 cm lesion.
Two mos. later, when tumor markers went up, another CT was scan which showed a
2.0 cm lesion which was reported to be "stable." It was stable between the 2nd and 3rd CT scans but not between the first and third. 5 months later another
CT scan was done--which reported a "stable" node in the hilra region. None of the other scans ever reported any mention of a node in the hilar region. Then
3 months later I had another CT scan which stated the second lesion in the liver was stable. Interestingly, 4 years before, when trying to find a cause for the bilateral lower leg swelling I had, an ultrasound was done which specifically stated that there was No visible lesion in the liver. So, how did I go from "0" to one to two lesions and it is "stable." Something must be going on. That was the reason for our seeking another 2nd opinion last year.
This oncologist who does 2nd opinions only consulted with a radiologist who said we should have a special type of CT scan done to confirm whether or not I had an hemangioma or other type of lesion. My HMO oncologist said he would only do it if I paid for an outside, private opinion, and it was recommended (even though it had been suggested by gastro-enterologist who was treating me at time of pancreatitis attacks). I guess the private dr., in his enthusiasm to get this test, put in that an MRI would not be the test to use and recommended the 3-phase CT. It was done. The report, however, was only compared with the most recent CT scan rather than the first one and basically showed no change since then.

same HMO in another area of the state was dx'd with a similar type of cancer with several positive nodes. Her scans, like mine were clear, so a whole body
MRI was done and a lesion(s) were found in her liver.
Now, as I mentioned above my oncologist had written in his first several reports that an MRI had been done. It never was. And then this poster mentions that this was how his wife's liver lesion was dx'd. Then a private dr. negates the necessity of doing this when recommending another test at this time. That sabotages any possible legal recourse I would have because it could be argued, that it may not have made a difference since the private dr. is recommening this other test over the MRI.
I don't believe that the issue of whether or not I had a malignant lesion has ever been resolved. I have read, in technical articles, that after treatment (chemo) that a malgnant lesion can resemble an hemangioma and subsequently be hard to differentiate. It can be done, but everyone needs to know what they are doing and what they are looking for. I don't feel that the radiology dept at our HMO is doing this (have other examples but won't list here--from others, including own family and others).
In addition, between the time of my dx and surgery--23 days--I lost 17.5 lbs.
That seems like an awful lot of weight to lose in a short time. I did give up sugar and start exercising--nowhere near the amount of exercising I am doing now and not losing any weight. At the time I was overweight by about 25 to 30 lbs--but was not obese. So....all I can say is that under the above circumstances we do not feel that the issue was ever resolved or that a malignancy was definitively ruled out.

Kaye wrote << As I am sitting here, I can look all the way around although when I turn my head to either the left or right the area just above or over the collar bone (but not the bone) hurts. Actually it barely hurts if I turn to the right, but that same area hurts when I turn my head toward the right to straighten it or turn my head to the left. Maybe that is just strained from sleeping on it. >>

I am sure the above was what I suggested at the end--from sleeping on it. I have been up for over an hour and that seems to have gone away. I was sleeping in an unnatural position to avoid the problem (what has been happening while lying on my back).