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.      

Leg pains and forget what I said years ago

I have to say that I am not enjoying this anymore.  Not that I ever was. But, recently my legs have been bothering me.  It is hard to even sit here typing. They both ache. Walking sometimes is hard. If I have managed to fatigue either of them it is like walking with the proverbial rubber crutch.  I must look like one of those poor people that folks see tottering along in old age. Well, I am old, but not that old yet.  This certainly is a new wrinkle in something that is supposed to only impact shoulders.   So- We have weakness to the point of falling, but not quite yet.  Luckily this usually is only one leg or the other. If both went at the same time, I would be down for the count.  Pain is bearable, but a constant reminder of something that is not right down there.  It starts at lower back almost to my butt and runs down to hips and knees.  Standing makes it worse. Usually sitting is better unless it is as I am now with a desk chair and arms extended to keyboard.

And the arm still bothers me at night trying to sleep.  Actually now that I say that, turning from one side to the other is harder again, and staying any time on my back irritates that achiness.  Oh well.  It is not like I Have to get up and go to work. But, it is harder to get around and stay out doing anything at this point.

That brings up another issue.  I ran into someone recently who asked me if I thought I identified with the disease too much.  I know I mentioned here before that I was trying not to do that- some mumbo-jumbo about not “being the disease.”  I think it is good to try to keep that attitude.  It is very hard to do it with a condition that is chronic, or that is constantly evolving as it cycles through you.  Sure, I do not go up to someone and introduce myself “Hi I am Joe Blow and I have HNA.”  But, there are few times in a day that I am not thinking about it in some way.  If not in a cycle of pain, it finds other ways to remind me it is there.  If I get complacent and forget about it for a while, I usually end up dropping something or hurting myself trying to pick up something that is way too heavy and I should know better than to attempt at this stage.  So, to that person (if you ever make it to the blog and read this) I guess I do identify with it a bit too much- maybe more than I would ever admit.  But, it makes itself hard for me to ignore it.  Now, I really do have to go. Sitting here just is no fun anymore.

Hereditary Neuropathies of the Charcot-Marie-Tooth Disease Type (Includes HNA)

Maybe I gave up on CMT too easily earlier in the process. I had seen earlier that there was a subset of CMT refered to as “Hereditary neuropathy with predisposition to pressure palsy”, but I do not remember seeing that they went on to describe HNA as a subset of that. Maybe it is possible to have both HNA and CMT because it appears here at least that the two are related as described.

Form this website:

Hereditary Neuropathies of the Charcot-Marie-Tooth Disease Type

http://emedicine.medscape.com/article/1173484-overview#aw2aab6b3


“Neuritis with brachial predilection/hereditary neuralgic amyotrophy/hereditary brachial plexus neuropathy
Dreschfeld in 1886 may have been the first to recognize this condition when he described a woman with 3 episodes of painful arm weakness, whose sister had experienced 7 such attacks. Jacob et al in 1961 described in 7 patients of 2 unrelated families 14 similar episodes of recurrent brachial neuritis with incapacitating pain, weakness, wasting, depression of reflexes, and sensory loss. The legs were involved, and arm involvement was severe.[20] In 1973, Guillozet and Mercer described a similar condition in 3 generations of a family.[21] At times, the lower cranial nerves and sympathetic nervous system are involved as well.

HNA is an autosomal dominant form of recurrent focal neuropathy. Individuals experience episodic brachial plexus neuropathy with weakness, atrophy, and sensory disturbances, preceded almost always by severe pain in the affected arm. Age of onset is in the second and third decades of life and rarely in the first. Recovery is usually complete and begins weeks to months after the onset of symptoms. Recurrent episodes may affect either arm. The right arm is involved more often.”

Magnesium supplements or real food?

I have talked about using a magnesium supplement in prior posts. Every once in a while I will stop taking it to get a reality check of a sort. There is no sense in spending tons of money for a supplement if real world eating is working to supply the missing magnesium.   So, I was surprised recently when after stopping the supplemental magnesium, I felt fine after a week or so.  What is different?  Getting back to basics, I started eating more peanut butter almost daily.  This is not a lot as it turns out.  Usually it amounts to a couple of tablespoons of pretty good quality (not Jiff for example) peanut butter- the kind that is just ground peanuts a bit of salt, etc that you have to mix to get the oil blended back in.  It turns out; peanuts have a high amount of magnesium.  Cashews also work, and have more magnesium, and a bit better than that would be almonds.  If you prefer real food to supplements, it is an easy add and probably cheaper in the long run.