Mini-Update (Updated as of Sunday 1-19-2014)

Hi David -

I don't post much these days but read your posts and the posts of others fairly regularly. I have followed your posts for years and have given considerable thought to the cause or causes of your ongoing and worsening neurologic symptoms. I previously experienced much of what you're experiencing now and wanted to offer it for what it's worth. I am not a physician so my story is just one man's story which turns out to bes based upon science and medicine that is not well publicized or understood.

Several years ago I started to suffer from radiating pain in my shoulder blades, arms and hands. My doctor first prescribed a Medrol dosepack which worked terrifically well but was temporary in duration. After that, I started taking lose doses of Percocet which helped the pain some. Around this time, I started suffering from other neurologic symptoms and as the symptoms worsened my narcotic use increased. The neuroological symptoms continued to worsen. I had been under the care of an ortho surgeon for several herniated disks in my neck and tried to avoid a fusion surgery. As a result, my narcotic intake continued to increase.

A little more than a year ago, I presented to the ortho and he did the standard tests. I now exhibited more disconcerting and very ominous neurologic symptoms including clonus in both feet and very brisk reflexes. A repeat MRI of the cervical spine was interpreted as normal despite previous imaging that showed the herniations. The surgeon told me he suspected Lou Gehrigs or MS and suggested an MRI of the brain. I was freaked out and continued to suffer worsening neurologic symptoms and was sure I was going to die without a diagnosis.

My wife sees an internal medicine doctor who is very smart. Since I had already typed a list of symptoms and spoken to numerous other doctors who had their opinions, I asked my wife to give her doctor my list and see if he had any ideas. He sent her an email she shared with me and I couldn't believe what he wrote.

He explained that he thought that most of my symptoms were caused by the effects of the narcotics on my pituitary gland and metabolic system. He further explained that some of my symptoms were related to daily withdraw symptoms in the morning, and that my long term use of narcotics had coaxed my sympathetic nervous system in such a way that my pain receptors were oversensatized and thus my pain was exaggerated and would continue to get worse as long as I continued to use the narcotics. By that time I was taking Oxycodone at 100 mg or more daily.

Needless to say, I didn't believe a word of it and thought it was just another opinion from a doctor who refused to accept the efficacy and need for pain medication for treatment of chronic pain. In the back of my mind, however, I knew I trusted the guy so I began to read about the effects of long term narcotic use and couldn't believe what I read. His theories were in fact well documented in the literature. However, I concluded that since I had taken pain meds before and never had the problems that developed, and because my pain was so severe, it couldn't be the cause of my symptoms. So I continued taking the meds for another month.

At the end of December 2012, I was at the end of the line and had seen every specialist known to man, including rheumatologists, endocrinologists, neurologists, neurosurgeons, radiologists, psychiatrists, and many more. After no conclusive diagnosis to speak of I decided to re-read the email from my wife's doctor and decided there was only one way to find out if he was right. Under the care of a supportive doctor, I rapidly stopped all narcotics and alcohol consumption. Not everyone can do it as quickly as I did, but after two weeks my symptoms began to subside. The clonus disappeared, the brisk reflexes slowed to normal, the swelling in my hands and feet subsided, and the pain was much reduced!

The point of communicating my story is to shed light on the effects of chronic narcotic use and the idea that in many instances, whether narcotics, blood pressure medications or other pharmaceutical, in many cases the cause of symptoms not otherwise explained by ordinary and extraordinary medical testing is allergic or idiosyncratic reactions to drugs--even those taken for years without a problem or symptom to speak of. Also, if under the care of a doctor, which I emphatically emphasis, the elimination of drugs in a carefully monitored trial and error way is perhaps the easiest means of trying to determine if your body has become overly-sensatized to a medication (or food such as gluten). And other than the medical supervision that is required, it is one of the only "tests" we can administer on our own and with full control over the course of "care."

I am not sure whether you are using narcotic pain meds or what other medications you are on, but I share my experience in the hope that you will consider it along with the other opinions you've received and understand that medications can and do screw up one's metabolism to such an extent that the symptoms match or mimic other horrific illnesses and diseases which doctors, who are either unware or not convinced, will ignore in favor of a more objectively discernable cause.

Finally, I had the second cervical MRI re-read by a radiologist friend at Harvard who called me urgently in January 2013 and told me my herniations were much worse and not much better as the second radiologist's interpretation was wrong. I had a multilevel fusion and have fully recovered from that surgery.

I am a true believer that a patient must be his own best advocate and I know you are just that. As a medical malpractice attorney, I deal with medical mistakes every day. So I come by my distrust of the medical system honestly perhaps to a fault.

I hope you continue to search for medical answers while keeping an open mind and considering those things you have control over and those you really do not.

Happy New Year to you and yours!

AJ 47 --

Thank you so much for sharing your story........ If you ever feel like sharing your story over on the Chronic Pain forum - we would really welcome it.

I'm absolutely in agreement with you that MANY of the medications that we use to treat our ailments/pain/whatever - can, in return, cause other issues - some of which can be even worse.... or, as you said, "mimic" more serious diseases.

When my narcotic intake was at it's highest (several years ago) - many things happened within my body - including my endocrine system almost completely shut down.... I ceased having a menstrual cycle for many years (despite being in my 30's).... and many other neurological issues - and MS was thought of as well in my case.

So, thank you for sharing your story...... that's it's important that we look at what we are already putting in our body in terms of medications (and also food -- that's my latest thing too - as I've gone gluten and dairy free)....

When you are suffering terribly........ it's worth exploring every possible option.

--Tina

To AJ:

Wanted to reply to your long and well thought out post. That was quite an interesting story of your own personal experience. Anything is possible. Sometimes the most unlikely root can be proven to be the cause of strange and unusual medical problems.

In my case, I have a long track record of weird neurological quirks and events, that date back a good 35-40 years. One of my problems, is that I never had a really good, sharp neuro doctor before, plus like all disciplines of medicine, much has developed and changed over the years.

Yes, I am on opioids, but only the past 3 1/2 years. Some of my issues preceed my use of painkillers for decades before. And for the record, I haven drank in over 40 years, not a drop.

Based on the consensus of opinion of all the doctors and specialists I have seen, my nerve damage is tied to the extreme radiation damage that I underwent in 2009. They are all in agreement with that, and more than one doctor, has commented, that they had never seen such severe damage before like I have.

My oncologist and the neurologist do not believe that my fairly recent use of pain medications has anything to do with what has been damaged, and why it is spreading through my body. Not saying its not possible. Just a lot of different circumstances and history between what you underwent and what I underwent.

Trauma, is also another suspect in this story. The trauma of undergoing two bad major radiation episodes in about a 9 year period, and having a total of 14 operations during that time, combined, lead to a lot of possible trauma induced neurological outbreaks.

And in my case, based on the findings of a good orthopedic surgeon/doctor, and on the outcomes of a regular bone scan, full body PET/CT scan, and several sets of specialized MRI scans, there is no evidence of any "bone" problems, spinal issues, etc. Even at age 61, there's only a trace of minor arthritis that shows up on my knees, and its not enough to ever cause me any direct pain or problem.

It will be interesting what is discovered or found out. Was disappointed to read last night, that even with CRPS or ASL, that a "clear" MRI is not absolute proof to rule out either of them in a diagnosis. So part of me was thinking, what was the point of doing this scan? Yes, it could clearly show up some specific neurological problem brewing, but a clear scan alone, is not proof that one does not exist.

Still, I will go with the flow, and cooperate with any tests the new doctor orders, as he has convinced my oncologist, that he can get to the bottom of things.

Thanks for sharing your story, I found it fascinating and interesting. I wish you the best in your own medical journey, you have been through a lot yourself. As suggested by another poster, you might want to consider taking your story to the HW Chronic Pain forum. They got some good people there, and I think they would take great interest in what you post.

My best to you,

David

Post Edited (Purgatory) : 1/3/2014 8:13:01 PM (GMT-7)

Hi sephie,

Since David's posts I have been reading up about ALS and it seems that only 5-10% of cases are inherited and about 20% of cases are found to be of genetic origin. The cause of the disease in the rest of the population is unknown.

Given David's military history it is probably pertinent that the disease is twice as common in veterans than the rest of the population.

Interestingly I noticed that the department of veteran affairs in the US now covers sufferers of ALS in any veteran with longer than 90 days service to 100%.

I really hope that David does not have this disease but if he does it could be caused by a mutation of his genes because of some aspect of his history including for all we know the badly administered radiation causing a genetic mutation or it could be related to his service in the navy. I don't think that this should scare most new person here - David's case is pretty unique and this site is about sharing stories, the good stories about the zero club and the ones like David's which are complex and not clear cut.

I hope that once the doctor works out what this is that it is something a lot more fixable than ALS.

Regards,
An

Purgatory - you're a lot braver than me. I would have insisted on some valium or similar before being put in the mri machine like that!!

David,

I am sorry to read about yet another horrific experience for you.  Next time, tell 'em to give you some diazepam along with the IV contrast dye.  Take care and hang in there...Tim

David,
My brother, the one with cerebral palsy, had to do the nerve conduction tests too. I was in the room with him for that - partly because involuntarily jumps at the slightest noise and partly because the docs couldn't figure out how to get him on the table. I got to do the, "talk soothingly while firmly holding down" routine.

so sorry you have to go through that. I hope that the discomfort of the test provides some useful information.

Peace,
Andrew

David, thanks for the update. I'm so sorry that today was so stressful. I empathize with your suffering. Know that prayers continue and do try to rest a bit. Maybe (fingers crossed) the VA vists will go much better than last time.

David, reading your description of the nerve tests made me cringe - sounds like something out of a grade B horror movie! I hope that by the time you read this post, you're feeling better.

I guess the fact that the brain MRI showed nothing remarkable is good news but, on the other hand, I imagine it was a bit disappointing as well. Since you've seen an orthopaedic doctor I assume they checked your cervical and thoracic spine (neck and upper back) looking for any disc problems...I seem to remember that you mentioned no issues were found with your spine hence this assumption.

Any ideas what the next step will be with the neuro? If CRPS, do you think he'll want to try another nerve medication?

clock - the shocks were bad enough, but the wires under my skin being twisted around weren't a lot of fun either.

boogee- that's a new disorder to me, amazing how many strange rare ones are out there. but when I think back to my 3 bouts of porocarcinoma. at the time, I was one of only 38 known cases in US medical history. It has since been reduced in number, due to better testing. I had it in my scalp twice, perhaps the rarest of all, as its stated that there have only been 2 cases in the entire world of getting it on the scalp
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UPDATE: WEDNESDAY

Had the EEG done today. For once, a fairly pleasant test. A woman pasted 23 electrodes all over my scalp (this part took the longest time), and then 2 on my chest. She said they didn't normally do the chest ones, but my neurologist requested it, so he could study my heart as she was scanning my head.

Then I was laid back in a nice comfy leather recliner, lights were turned off. First 20 minutes, all I had to do was to keep my eyes closed entirely, and zone out. That was easy, I was happy to day dream away knowing there wouldn't be any pain associated with the procedure. Then, the last 5 minutes, with my eyes kept closed, she moved some kind of strobe light up close. There were 7 groups of multiple flashes. They started slowly, then increased in frequency, and at the end, it was like watching a fire works show, even though my eyes were closed. And that was that. Had a mild headache for about an hour after, but not bad.

So now, when he gets those results, plus the special blood work from yesterday, they will set up a followup appointment to see the results, and what's next in line.

I am well prepared to my two meetings with the doctors at the VA in the morning. Have to take samples of my Ostomy supplies and all my meds with me, plus tons of medical records, including the latest assessment letter from my oncologist. Not really expecting any problems from this, probably just a lot of time being spent.

That's the latest

David

Feel like progress is being made, so I am still in the "no worry" and "lots of patience" mode

David -- even on "sabbatical" i'll bet you post more than 75% of the posters here !

ed

Getting ready to walk out the door for the 20 minute trip to the VA

Have a brief case ready, with all my medical files, chronologies, etc, list of questions, good to go.

Have to bring all the actual meds that I am on, along with samples and ordering information for my Ostomy supplies.

Bringing my Kindle HDX tablet, in case I get bored waiting. With 64 GB of memory, I have currently 9 HD movies downloaded, so that I don't even need Wi-Fi to stay entertained.

Hoping and feeling this will be a good and productive visit. Feel fortunate to have a good secondary "health insurance" aside from Medicare. If nothing else, will be using the VA for all the other medical stuff that my oncologist wouldn't cover. Especially interested in the dental.

David

Aimzee, thanks, give my best to Ron, as usual.
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Thursday update post VA appointments. Last new update on this thread, will start a new one once results are back from all the Neurology tests next week.

Great visit with VA. First meeting was set for 12:30. I was called back at 12:35. Met my newly assigned medical team, all were first class. My admin person got me up to date with how the VA worked these days, and answered a lot of generic questions I had. Then I met my doctor's nurse, she's been VA for over 25 years and was very personable and seasoned to their system. She did all the basic nurse/patient stuff, took down a lot of info, and I had to answer pages and pages of personal medical history and family history stuff.

Then I met the doctor. We spoke together, with the nurse taking note on a laptop, for about 1 1/2 hours. Covered most all of my medical history/events going back to 1983 when I had pancreatitis, and worked forward. He was a little on the young side, mid to late 30's, from India, but had perfect English skills.

These 3 people will make up my regular team. I have phone and e-mail contact ability with all of them.

He suggested that my oncologist (whom he knows personally) is better qualified to help me on the PC then any of the available VA oncologists. He said to stay with him,and the VA will pick up any of the tab that Medicare doesn't pay. He said with most specialists, the VA would rather pay the existing doctors that I have, then to go to theirs. Plus, if I wanted to see a VA oncologist or other specialist, it would involve a 220 mile round trip for me to Columbia.

For starters, they are taking over half of my meds, and will be filling them for free from now on. They would pay for my pain meds, but we agreed, my current set up better suits me, as it gets real complicated doing those meds through the VA. If I were ever to lose my current arrangement ,they would take them over and pay all of it.

Put me on a low level BP med for the first time in many years. Being getting increasingly rising BP readings the past few months. He believes it's related to stress in my body in connection to all the pain I am dealing with.

They are arranging my visit to their dental department, said it shouldn't take long.

Went to the pharmacy, and they will supply my non pain meds immediately. Plus, I brought samples of all my Ostomy supplies, and they will pay for and supply 100% of them from now on. That will save me hundreds of dollars a year from now on.

They are arranging to gather all my medical records from all of my doctors, to have on file, so that I don't get stuck with spending money to get them myself.

If I am not happy with the neurologist, they have a good local one that they use, and I can see that doctor anytime I need. So I will keep that in mind if the current one doesn't find anything to properly diagnose.

And, they gave me what seems to be an expensive BP machine, and a log book, so that I can take my Bp twice a day and fax them the log sheets weekly.

As far as reimbursements for what I have had to spend out of pocket the past 4 years, absolutely yes. They are setting me up with an appointment with a social worker, who handles that part.

Way too much to remember from this visit, I was given lots of reading material to go over. I was very impressed with the efficiency, courtesy, and professionalism I was shown today, even on this initial visit. We were all on first name basis by the end of the visit.

The nurse told me, that they are striving to become the best VA Outpatient in the entire country, so they are working hard on this as a goal. She said they already have a better reputation than any of the clinics in SC, NC, and GA.

If I think of anything else, will add to this thread. Way past my nap time, pretty drained, but feeling good that I have a whole new source of medical help and resources to use.

David