Physical Therapy is working- Shoulder is "thawing out"

Well, with the help of physical therapy three times a week and stretching on my own in between appointments, I am slowly getting range of motion back to my right arm. I am sure the orthopedic doctor who gave me the shot of cortisone will be disappointed at that- assuming I do go back to see him.  What I have found is that the muscles of my shoulder had allowed it to get into a position that stopped it from moving to normal range of motion.  With concentrated effort to move my shoulder prior to stretching, I was able to get it past the previously frozen limits to some extent.  And my Physical Therapist has been getting it to go even further in the manual stretching portion of the treatments.   It is slow progress, but it is working out of it.

Now a frozen shoulder and cortisone inspired hiccups

Towards the end of last summer, I had written about a possible flare. This caused enough shoulder pain that I tended to avoid use of the arm for a while.  I did not really think it had been long enough to cause any problems, but as the first pain subsided a bit, I realized I had lost some range of motion.  I tried to stretch, but by this time it was too late. Now the right shoulder was a bit frozen.

Here are a few things to avoid in the case of future flare-ups. I have to try to remember them myself.

If the pain from a flare is intense enough to cause reduced use, you have to do passive range of motion exercises to keep the shoulder limber from the start.  I am not sure why I forgot about this. It is how I had treated my fingers long ago.

As soon as possible, and as soon as you can stand it, try to do active range of motion exercises.  It may hurt to do so, but it hurts more if you let the shoulder freeze on you like I did.  Now, you may not have the same issues I do. From both MRI's I have had over the years, it has been mentioned that I have a downward sloping Acromial space. This means for me, that the space between the end of the collar bone and scapula is smaller than the norm. This makes me susceptible to impingement disorders. And that may be what I have been dealing with for the last few months.  And, I could have made things better if only I had kept moving.  

Speaking of moving, I have been to a physical therapist recently who actually has treated patients having PTS/NA in the past. I think he really gets it, and I am happy to have been directed to him.

Also, I have been given a shot of cortisone by an orthopedic doctor who really did not get it at all.  I had filled all sort of paper work out explain about my history with PTS/NA.  His first words were, “Well, how did this happen? Were you doing some painting or tree removal?”  Me- No, I really have not been able to do stuff like that. I have Neuralgic Amyotrophy.   Him- “What is that?“    Me- You may know it by its other name, Parsonage Turner Syndrome.   Him-  “Well, that is self limiting and people get better and get immunity to further attacks.”  At this point, I should have run away very fast. Immunity from PTS is nothing I have ever heard of.  I told him of my first two documented cases, and that I know that what started this most recent attack was the same pain in the same part of my shoulder that it has happened the first two times.  The weird thing too is that he is in the same medical group of my original hand doctor who told me I would never recover hand function without surgery.  I told this doctor about that and showed him that my hand was in fact better without surgery.  He then did a short exam and about pulled my arm out of the socket trying to see if I was faking how locked up it was.  Or maybe he thought he could do a quick snap move like a regular chiropractor may have tried.  He also was quick to mention that if I could not get it to free up, that surgery would be needed to fix it.

Surgery.  Hmm. I have not heard much good coming from shoulder surgery.  I am not sure how it would be for me anyway since I am prone to entrapment issues.  Fix it this time, and next time it is going to be worse no doubt.  So, on to the shot.

The shot itself was no big deal.  And it feels like it may be helping me to regain some movement.  I wonder about side effects of cortisone that are not mentioned in the main websites- at least not that I can find.  They mention that it can send your blood sugars through the roof so be sure to tell your doctors that you are diabetic if you are.  It can also make you jittery, as they mentioned at my appointment.  What no one talks about is a possibility that the shot can give you hiccups that can last a couple of days.  For me, I woke up the morning after the shot hicccupping, and it kept up most of the day except for just a few brief breaks.  It seemed totally out of the blue.  A friend asked me if they could be a side effect of the cortisone.  I said, not that I knew about.  But Googling “hiccups after cortisone shots” verified that it happens to many people. And to some who have to take the shot long term, it happens every time they take the shot.  I have no idea why, but I will ask.  Very odd.  I was lucky my own case only lasted the one day.  It was about driving me crazy after a full day of it.

Update: I see on Web-MD that Oral Cortisone is listed with hiccups as a possible side effect.  Not that I had the cortisone orally. . .

Is it really Anterior Interosseous Nerve syndrome, or just a more rare type of Neuralgic Amyotrophy?

PTS/NA can cause symptoms that are exactly like Anterior Interosseous Nerve syndrome (AINS). I know this because I had this diagnosis originally. When my fingers suddenly could not flex to make the traditional “OK” finger gesture, it followed a month or so of arm pain and weakness. At the time, I was told I had a textbook case of AINS. But during all of my exams, no one could tell me why I had AINS.  They kept asking me about the pain in my forearm, which I did not have.  I kept telling them I had pain in my upper arm and a bit in my shoulder. At the time I had checked the known causes of AINS, and found that none of them seemed to match my case.  But, what else could it be?

 Eventually, the other shoe dropped and my diagnosis was altered to PTS/NA and I realized that nerve damage that PTS causes can be misdiagnosed as AINS. That had originally been the reason for this post. I had recently noticed some who had been diagnosed with PTS/NA reporting that they had now also been diagnosed with AINS and now have to worry about two rare diseases. And in some cases surgery had been suggested as a cure.  I had found this article which designates the names of at least some of the nerves impacted by NA.  Notice in the anatomy section the mention of the anterior interosseous nerve

http://wiki.cns.org/wiki/index.php/Neuralgic_Amyotrophy

“Description
Neuralgic amyotrophy is also called Parsonage-Turner syndrome, brachial neuritis, and brachial plexitis. In response to bodily stress (e.g., surgery, flu, unusually excessive exercise, post-vaccination), the brachial plexus, branches of the brachial plexus, or other upper (rarely lower) extremity nerves may develop idiopathic inflammation. The exact cause is unknown. This inflammation is quite painful, which limits use of the arm. As the pain slowly resolves over a few days or weeks, the patient now notices paralysis and a variable degree of numbness in the shoulder and arm. The amount of paralysis varies, with unusually severe cases having complete arm paralysis. Weakness and numbness slowly resolves over time. This may take many months, or even 1-3 years. Although most people improve, the arm may not return to normal and remain partially paralyzed. Brachial plexitis may involve nerves controlling almost any muscle; however, nerves to the shoulder, scapula, and forearm are more commonly affected.

Anatomy
The following nerves may be affected (unilateral or bilateral): brachial plexus, long thoracic nerve, anterior interosseous nerve, posterior interosseous nerve, suprascapular nerve, lumbosacral plexus, and others).”

I hate to see anyone go through surgery that would possibly not be needed or even be an answer for the problem being experienced if there were a viable alternative that may help, namely just to wait it out.  If you have a case as AINS, and do not have the typical causes in your history, it may be caused by PTS/NA.

Well, then I just found this suggesting that maybe doctors have realized that inflammation of the nerves can cause AINS in a similar way as PTS.  See the link here:

http://en.wikipedia.org/wiki/Anterior_interosseous_syndrome

“Most cases of AIN syndrome are due to a transient neuritis, although compression of the AIN can happen. Trauma to the median nerve have also been reported as a cause of AIN syndrome.
Although there is still controversy among upper extremity surgeons, AIN syndrome is now regarded as a neuritis (inflammation of the nerve) in most cases; this is similar to parsonage-turner syndrome. Although the exact etiology is unknown, there is evidence that it is caused by an immune mediated response.
Studies are limited, and no randomized controlled trials have been performed regarding the treatment of AIN syndrome. While the natural history of AIN syndrome is not fully understood, studies following patients who have been treated without surgery show that symptoms can resolve starting as late as one year after onset. Other retrospective studies have shown that there is no difference in outcome in surgically versus nonsurgically treated patients. Surgical decompression is rarely indicated in AIN syndrome. Indications for considering surgery include a known space-occupying lesion that is compressing the nerve (a mass) and persistent symptoms beyond 1 year of conservative treatment.”

Notice it says in most cases it says that surgery would not be indicated for most AINS cases now a days, and outcome for surgery rarely improves the outcome of just waiting.  Unless they can be relatively sure there is something to decompress, you may be better off just waiting.

Sometimes a nodule is just a nodule- back to HNA/PTS discussions

After a biopsy (close to $3,000) which was inconclusive, and a CT scan at around $950.00, it has come to light that the nodule in my thyroid is benign.  Both of these tests, plus around $800 for blood work, are things my old insurance would have not helped much as far as payment- and as such, I would have declined them.  At least now, I can know for sure it is OK to not do anything right away and to monitor the growth over time, for unwanted or unexplained growth.

So for now, I can get back to concentrating on the HNA question. I think it is really a done deal as far as the hereditary part of the NA.  I have clearly had another attack at the end of last summer concentrated to right shoulder as far as worst symptoms go.  This was alluded to in recent posts, and right now is better overall as far as pain goes, but still I have lingering pain in right shoulder, and have to at times use left arm to support the right in daily use.  It was/is clearly nerve related pain, responding to prednisone long term, but not even touched by any amount of ibuprofen. Sleep is an issue again.  Any time on my right side results in pain that wakes me up.

Weakness continues, but it is not quite as bad as it can be.  I really can not even think of trying push-ups until my right arm recovers a bit. Also with this new attack, I am having a bit of vertigo and nystigmus at times. In the past I also went through a short period of this, and it passed eventually.  This time, it is a bit worse and the lengths of time of the "spells" seems to be longer. It makes me wonder again about other possible issues, but I also know that HNA can produce periods of vertigo. And I know that others with HNA have reported dizziness at times.  I will just have to be more careful until it gets better.

New doctor in the house. . .

The first thing to mention about the comparison between my old doctor and the new ones deals with timeliness.  Can a doctor really be on time?  Can you arrive a few minutes early and actually get in before the scheduled appointment?  Well, after having fought my way in to the last few appointments with my regular old doctor, I can say that “Yes you can.” For my appointment, I got there a bit early and got into the exam room ten minutes or so early. The doctor entered right at my appointment time and apologized that he was late. What?

I had lab work of course.  All in all it was almost the same as it was the last time I had blood work.  The difference was that last time my doctor said- It is all normal.  This time, with virtually the same test results, the new doctor went in detail into the results and what they all meant, and then told me the only slight problem was that I was just a bit anemic and that I could benefit from a dietary supplement of B-12 and iron.  I mean, I already knew that from last time but I had not done anything because I was told it was of no concern to be just a bit off as far as being anemic.  This time, I jumped at getting the supplement because I was told it could help.

Oh, and this one actually examined me. To be fair, it has been a while since I had scheduled a real extensive physical with my old doctor.  But, I would have expected that for whatever reason I have had to see him that he would at least have done a cursory exam, since that was how my visits were billed to my insurance.  The new guy did not do an extensive physical either. But he did a quick exam and found a tiny lump on my thyroid.  It is too soon to say what this is as the biopsy is still in the future.

Long time readers, if there are any, may already know that I have been afraid for a while that doctors would have missed something about my overall health because they were thinking that all my symptoms could be explained by PTS/HNA.  And maybe while I was seeing doctors specifically about that earlier on, they were not really looking at my overall other health concerns as much as I may have thought they would or should do.  You know what though? I am not sure how long this lump has been there, but it is possible it may have been overlooked earlier from lack of interest. I can’t remember the last time any doctor anywhere examined my neck.  They may have had reason to check.  It turns out my thyroid function is still OK, but my thyroid could have been playing a part in my overall weakness.  No one ever bothered to check that before. . .

Legs and minor return of strength

Yesterday I mentioned my legs felt better.  At the same time I noticed that there was a bit less shakiness in them. It has been easier to kneel down and get back up.  This being true, I wondered what the old push-up test would suggest.  The last few times I have made attempts, I have only been able to do one or two, and those have been iffy.  Yesterday, I could do ten.  They were not the best because my right arm is still a bit funky, but I managed to do them and generally felt OK during them.   It is interesting how the return of strength relates to cycles of diminished pain, particularly in my legs.   By the way, ten yesterday is all I am interested in now.  Maybe in a week or so I will try again.  But even if I do not, I can tell when my legs get stronger or weaker what part of the cycle I am in.   I sometimes wonder if anyone seeing me out around town wonders why some days it appears I can barely walk, and other days I am walking fairly normally.  This is truly an odd disease.

Legs a bit better, and a new doctor in my future

You should let me know if you are tired of me and my whacky little posts.  Of course, if you are you will stop reading them I guess.  I will know then.

Just a couple of things. . .  I had been having weird leg pain as mentioned in prior post. It seems a bit better the last couple of days, and almost feels normal right now.  Am I sure this is related to HNA?  No.  But no one has told me it isn’t related.  It would seem that the cyclic nature of the my leg issues seems to fit HNA or what I see of it.  My right arm is still in the mode of aching if I lay too long on it at night- and it definitely wakes me up to tell me.  Last night it was in a dream- in the dream I was having my arm started to hurt and I finally realized it was not just in the dream.

Also- You may remember my mention of my old GP doctor who to my way of thinking was extremely rude to me last time I tried to see him to talk over the results of almost eight thousand dollars of tests he had ordered.  I had called his office to ask if I should come in to talk over the tests results.  His receptionist seemed to think that the doctor would like to see me about the results even though the neurologist had already told me his two cents worth.  I had spent close to two hours waiting past my appointment time.  His words when he walked into the exam room, “What are you doing here? “  After spending all of ten minutes talking to me and basically telling me the neurologist report was all I would get, he told me he had to scoot.  I have not seen him since.  The only good part to the story was that my insurance at the time had a timeliness requirement of two months for billing any charges and since they billed later than that, they got nothing.  I am sure they would have loved to bill me anyway, but the agreement for my policy stated that they could not bill the patient in this case.

Now that I have Medicare, there are new possibilities and also new problems.  I am in a rural city, so that is a problem.  Quite a few of the local doctors who used to take Medicare have bailed on the system. Most all of the doctors who take Medicare around here are not taking new patients.  Funny thing is my old doctor I already have does take Medicare.  If I could only trust him now, I would not have a problem.  How to find a doctor who takes Medicare in an area where doctors are too much in demand to be taking new patients?  Sometimes it takes luck.

Our local weekly paper does a “Best of” promotion every year.  In the issue showcasing the winners, I was surprised to see that the doctor I planned to abandon had been voted the “best” in the area.  Not only that, the medical group of which he is a member came in second place for "best medical group."  It is possible I could have switched doctors and stayed in that group, but I thought it might be weird to see my old doctor and have him realize I was not there to see him.  Plus, I believe him being part of that group was what changed him. When I started with him, he was on his own and took the time to let you think anyway that he really cared about the patient.  Since joining that group, he has seemed more hurried and less attentive to me anyway, evidently not to those who voted in the winner as “best doctor."

Who won as best medical group?  This was a group I had not really heard of. But, along with the write-up, there was an advertisement for a doctor who was part of that group and it mentioned that he was taking new patients.  I dropped by for information, and they do take Medicare patients.  I am in.  He is a Family Medicine/Sports Medicine specialist, so he might be just who I need to take over my overall issues.  We shall see.  Next week I have my patient history appointment. If he ever tells me he has to scoot, I am so out of there.