Finding out about my neuropathy from the neurologist

Last week I posted about my visit with a neurologist about my memory issues. In that post, I focused purely upon the diagnostics and discussions revolving around my memory issues. For this post, I will blog about a few other topics I discussed with the neurologist. 

Neuropathy in my legs!

The biggest shock for me during the neurologist meeting was to discover I have peripheral neuropathy. After a series of questions, the neurologist took a small needle out of his jacket. He then proceeded to prick my skin by the ankle. I could not feel the needle at all. He continued to keep piercing my skin every couple inches, going towards my knee. When he reached just a few inches below my knee, I finally began to feel the needle sticking into my skin.

The fact I couldn’t feel those needle pricks came as somewhat of a surprise to me. I thought neuropathy meant I would feel lousy pain all the time. Apparently, there are different symptoms that people can have from peripheral neuropathy. Looking back, I do recall having a buzzing/tingly feeling in my feet and lower legs, but I never really thought much about it. Additionally, I do get what I assumed was charlie horse feelings in my feet, which I now wonder if it has been neuropathy.

After the needle, the doctor checked reflexes in my legs. I was surprised to find I had little or no reflexes in various parts of my lower leg. In particular, my ankle appears to have almost no reflexes. Again, looking back, I probably should have known something was wrong. I do seem to have problems standing still. Sometimes when standing, my ankles will almost seem to give out. Other times when taking stairs, my foot won’t always be in the position I would expect it to be. These odd symptoms appear to be part of the neuropathy.

The neurologist believes the neuropathy is a side-effect of the chemo regiment I went through. In particular, he thinks the neuropathy is a direct result of my infusions of Vincristine (Oncovin), the O part of the R-CHOP chemotherapy I was on. Right now, the doctor doesn’t want to do anything with the neuropathy. We will monitor and go from there if my neuropathy gets worse or doesn’t improve. 

Shaking hands

For as long as I can remember, my hands have shaken. It usually isn’t a large shake. It’s somewhat similar to the involuntary shiver someone gets when it is a little bit cold. While this has made doing things such as soldering and painting slightly tricky at times, it hasn’t impacted my life very much. Plus, it doesn’t seem to have gotten any worse or better over the years. My shaking hands seem to be a regular part of me.

My shaking hands is a part of the conversation with the neurologist I should have taken notes on. He gave me an excellent explanation as to why this happens. The neurologist also let me know there is no need to worry. Finally, he gave me a ten-dollar name for the condition. Since it was nothing to worry about, I didn’t pay enough attention to what he called it so I could remember it now. But it was good to know my shaking hands’ condition is not likely to be related to any deeper medical issues.

Bone abnormality in my head

Before seeing the neurologist, I had an MRI of my head performed. The MRI notes included mention of a small irregularity on a bone in my head. Since I was able to speak with a neurologist, I thought this was the perfect time to ask what this abnormality was. At this time, the doctor says this doesn’t appear to be anything to lose sleep over. The anomaly was present in a prior PET and CT scans. The neurologist noted this abnormality doesn’t seem to have changed between scans. My future remission scans will let us know if there are any changes in the state of that abnormality. But at this time, he does not believe it is something to cause concern.

Back to see the neurologist in four months

As I noted in my prior post, I will see the neurologist again in four months. Mostly he will be following up on my memory issues. But he also wants to ensure my neuropathy has not gotten worse. Additionally, by then, I will have had another CT scan. He wants to ensure the bone abnormality has not changed. I hope that this future appointment will be quick and boring.

PS. On a side note, I have the equipment I need for my upcoming podcast. I am very much looking forward to adding a podcast to this site!

Song of the day: Rockit

Today’s song of the day falls very much outside of my typical music. But this 80’s song from Herbie Hancock has some impressive animatronics that reminds me of my lower legs and ankles. With no feeling, it almost seems like my lower legs have become animatronics just like in this video.

Bonus song: Sirius – Eye In The Sky

Since I started with 80’s songs outside of my usual taste, I thought this classic track from Alan Parsons would be worth including. This song has nothing to do with today’s post, but I like this live version of the song and thought others might as well.

Why I chose not to use the hot tub during chemo

In this post I will tackle a question submitted by a reader of the blog. The person in question is going to start R-CHOP chemotherapy next month and wonders if I used a public pool or hot tub while I was on chemo. A real simple answer to the question is: No, I chose not to, but I know many chemo patients who have used both a public pool and a hot tub. In this post I will briefly share why I chose not to use my hot tub while going through chemo.

Germs and bacteria are one issue

One of the reasons many people chose not to use a public pool or hot tub during chemo is because of germs and bacteria. Both public pools and hot tubs are notorious as a breeding ground for germs. Technically if the chemical levels are correct this should not be an issue. But I’ve noticed that hotel pools in particular seem to be very bad a regulating the proper chemical levels.

Germs and bacteria really didn’t play much of a factor in my choice not to use a hot tub. My youngest son has some sort of muscle or joint issue for which he is going through diagnosis. As such he uses a hot tub we have for him at home. Since I am the person who controls the chemical levels in the hot tub I have no fear of excessive germs or bacteria being picked up in our hot tub.

I think anyone on chemo has to make a judgment call as to whether they feel safe going into a public pool or hot tub. The immune system of someone going through chemo gets beat up pretty badly. I could understand why many chemo patients would avoid public pools and hot tubs.

Neuropathy was a bigger concern for me

The main reason I chose not to use a hot tub during chemo was neuropathy. Many chemo patients suffer from peripheral neuropathy while undergoing treatment. I wrote briefly about peripheral neuropathy recently in a post about the EMG experience. I was warned by an oncology nurse that soaking in hot water for too long could increase the chances of developing neuropathy. And searching online I found many occasions where people using a hot tub or taking long hot baths would develop neuropathy.

I also happen to suffer from hot feet. This is something I’ve mentioned to many doctors over the years, but so far has gone undiagnosed because some bigger medical issue has been in the spotlight. To me it is almost unbearable to wear socks and shoes for an entire day. That is the reason I wear sandals year-round, including when we have sub-zero temperatures. Actually today the temp will be just above freezing so I will be wearing flip flops and shorts when I take my trip into town (don’t worry, I’ll still have a winter coat on). I figured that since I am already at a high risk for neuropathy due to my hot feet that I would not tempt fate by using the hot tub while going through chemo.

I have recently spoken with an oncologist (not mine) who recommends his patients not use a hot tub or hot bath more than fifteen minutes per day. He believes chemo patients should generally be OK as long as their exposure isn’t too long. But, in my case he said I was probably better off not having used the hot tub because of my hot feet. He also correctly guessed that my hot feet got even worse during chemo. Of course I spoke with another oncologist who said people going through chemo should never use a hot tub. I don’t think there is a general medical concensus as to whether the hot tub is safe for chemo patients.

It appears to be a judgement call

As I wrap up this post, all I can say is that I believe each chemo patient will need to make their own judgment call as to whether going into a public pool or soaking in a hot tub is right for them. Also make sure to speak with your oncologist and possibly even pharmacist. Between searching online and speaking to various oncologists, I have found many answers supporting and opposing the use of both public pools and hot tubs. In my case, I did not risk using the hot tub because I feared peripheral neuropathy. And while going through chemo, I would not have even considered using a public pool because of germs and bacteria. Now that I am off chemo however I soak in the hot tub almost every day and look forward to swimming in the lake this summer (another source of bacteria). Hopefully this post will help some people trying to make this decision for themselves.

Today’s song: Twisting by the Pool

Today’s song comes from Dire Straits. Twisting by the Pool is really doesn’t fit into Dire Straits normal music catalogue. But it is a fun little song and came into mind during this post for obvious reasons.

Bonus song: Marry for Money

Today’s bonus song comes from Trace Adkins and only came to mind because the song happens to mention a hot tub. Yes, Phil Vassar would have been a more likely choice with his hot tub song. But even though I think Vassar is a great songwriter, I’m not a fan of his singing. Plus I should get bonus points for including an Adkins song, who my wife is a big fan of.

The EMG experience

The equipment used on Ashton was much more high tech than this old medical device.

Sometimes cancer patients experience problems such as peripheral neuropathy as a result of treatment; or even as a result of the cancer itself. Such patients may need to have an EMG performed to diagnose the nephropathy. Earlier this week I had to take my son Ashton to the hospital in Sioux Falls in order to have an EMG performed. Fortunately Ashton does not have cancer and instead is being diagnosed for some sort of hypermobility. But since the EMG test performed on him is the same thing that would be done for cancer patients I thought it would be worthy to do a post about his EMG experience.

What is an EMG test and peripheral neuropathy?

Before going on it might be helpful to find out what these terms actually mean. Here is part of the definition of peripheral neuropathy from the Mayo website:

Peripheral neuropathy, a result of damage to your peripheral nerves, often causes weakness, numbness and pain, usually in your hands and feet. It can also affect other areas of your body.

I was warned by the oncology nursing staff that chemo could actually cause peripheral neuropathy. When looking at the Mayo page about peripheral neuropathy I noticed one interesting possible cause which specifically mentions lymphoma:

Bone marrow disorders. These include abnormal protein in the blood (monoclonal gammopathies), a form of bone cancer (osteosclerotic myeloma), lymphoma and amyloidosis.

To diagnose peripheral neuropathy an EMG may be ordered. EMG stands for
Electromyography. Here is part of what Mayo has to say about an EMG:

Electromyography (EMG) is a diagnostic procedure to assess the health of muscles and the nerve cells that control them (motor neurons). EMG results can reveal nerve dysfunction, muscle dysfunction or problems with nerve-to-muscle signal transmission.

In the next two sections I will share Ashton’s experience with two different parts of an EMG test.

Getting shocked – the nerve conduction study

The first part of the EMG test Ashton went through was the nerve conduction study. Ashton had both arms and legs tested in this part of the study. It began with one of his arms. The tech hooked up electrode stickers to his hand, and then various places on his arm. An electric shock was sent through his arm.

Ashton was very nervous about this part of the test. The tech reassured him it was very little electricity, and it would start low and only increase in amplitude as necessary. To show Ashton it was OK, the tech used the probe on himself. I’m not really sure that made Ashton feel better.

I’m not sure how many pathways the tech tested on each limb, but it seemed to be quite a few. Ashton didn’t seem to mind most of the shocks. The only ones on his arm he said hurt occurred when the tech did the funny bone and the wrist. On his legs Ashton only complained about the shock right at his ankles. Other than those few areas, Ashton admitted the test wasn’t so bad.

Getting poked – the needle EMG

Ashton was even more noticeably nervous about the second EMG test. In the needle EMG the doctor used a needle to poke into Ashton’s muscle. The doctor would then measure the electrical activity of that muscle. Ashton was shown a needle to ensure him that it was not big and won’t leave a big hole. The needle itself looks similar to one used in acupuncture. This test apparently records how active a muscle is.

Luckily only one arm and one leg needed to be tested. I’m not sure how many pokes the doctor did, but I bet if I asked Ashton he could tell me. Ashton said he definitely felt the needle go into his muscle. When the doctor had to move the needle around in the muscle Ashton complained it was very sharp. During this part of the test Ashton had to either relax muscles or move joints according to what the doctor wanted. While this test was shorter than the first, Ashton said it seemed to take much longer.

There was only one point where I think the pain was more than Ashton was ready for. That was in Ashton’s calf and he asked if the doctor could hurry. There was also a little bit of blood coming out of the hole in the calf. None of the other punctures left any sign of a needle being used. At the end Ashton said he would prefer not to do that test ever again.

Ashton’s results

I don’t have his official results in front of me. But I do know what the doctor said. In the first EMG test Ashton had electricity ran through his nerves. According to the doctor this part of the test went very well and there is no sign of problems with the nerve pathways tested. This was really good news, since the tingling and numbness Ashton often feels in his hands and feet are not a result of these nerves having issues.

Ashton also did well in the second part of the test. Since the doctor couldn’t find any muscle issues in the arm or leg tested, he decided it was not necessary to test the other arm or leg. This was not surprising. When being treated by doctors it has always been noted that his muscles seem to be strong, and that something else such as ligaments were likely his problem.

On one hand it is good that no problems were found in either EMG test. The results further confirm his hypermobility and pain issues are likely caused in the joints. But at the same time we still don’t have any real answers as to why he has such extreme pain and numbness. His latest round of genetic testing should be done soon. Hopefully those results will give some answers.

Conclusion

Even though Ashton does not have cancer I thought his experience would be worth sharing on this blog. Many cancer patients experience peripheral neuropathy and may have to go through an EMG test. Despite Ashton experiencing some very short-term pain, it was well worth getting the test done. In his case the EMG was done to rule out certain conditions. With cancer patients it is more likely the EMG would be done to confirm and come up with a treatment plan for conditions such as peripheral neuropathy.

Today’s Song – Hurt

After seeing Ashton go through pain I couldn’t help but think of the classic Nine Inch Nails song Hurt. Technically the song is more about regret. But I thought the Johnny Cash cover of the song was well worth sharing in this post.

Bonus song – I won’t back down

Johnny Cash did some great covers in his American Recording series. One of my personal favorites happens to be Cash’s cover of Tom Petty’s song I Won’t Back Down. Ashton also happens to know and like this song because it was featured in the movie Barnyard.