Posts Tagged ‘CIDP’


Medical Travails part 2

June 9, 2018

Posted by Kanga. Please do not reblog.

bouquet of pink rosesSo, in continuation of the last post, I have had yet another hospital experience. For many years, I have had difficulty walking. I have had fibromyalgia, osteoarthritis, and fallen arches for 11 years, but something else was afoot because my ability to walk was gradually declining.

In 2016, I went to a clinic near work to see if I could get some help with this. Unfortunately, it turned out to be a poor choice. The doctor was initially excited about the condition, but after MRI exams and a consultation with a spine surgeon ruled out surgery, the doctor’s interest waned. The next step was a consultation with a neurologist. Now, consultation is a rather grand word for what actually happened. The clinic (they call themselves a hospital, but … uh, no) has a small staff and any specialists are pulled in from the larger Chinese hospitals (genuine hospitals). These specialists do not speak much, if any, English. This meant having an interpreter – the nurse who speaks a micron more English than the specialist. Communication is the biggest obstacle in getting any care for really serious conditions.

After this brief consultation, the neurologist recommended an electromyogram examination. This could not be done at the clinic, so they scheduled it to be done at one of the main hospitals over a month later. This exam was quite an experience in itself. I was met by one of the clinic nurses so that she could guide me to the right place and communicate with the staff. The building was old, crowded, and not well designed for it’s purpose. The narrow halls were crowded with Chinese people waiting to be treated or tested. The exam room was crowded and lacked privacy. The exam consisted of having my leg shocked to test the conduction of my nerves. Being electrically shocked was just as much fun as it sounds. Then they told me they were going to insert an electrode into my muscles. I don’t think anyone was wearing rubber gloves. All in all, I did not get a good impression of one of the biggest and well respected hospitals.

We had summer travel, so it was fall before I went back to the clinic to see what was next. More than once I had to schedule an appointment with the doctor to prod him to move us on to the next step. Ridiculous. When DaddyBird would accompany me, the doctor would look only at him and tell him what was going on as if I wasn’t in the room. I could tell you the nationality of this doctor (not Chinese) and that would explain it, but that would be spreading stereotypes. (Some times stereotypes are earned.) Ridiculous sexism.

Another consultation with the neurologist resulted in a recommendation for a full neurological work up in the Chinese hospital previously mentioned. The clinic doctor was to schedule this. Time went on … I saw the doctor in passing while at a physical therapy session and reminded him. “Oh, yes, next week…” Next week came and went, so I texted him a reminder. Again, no appointment. So, after a month of him not doing anything about it, I gave up on him. By this time, I had breast cancer concerns anyway, so I had to prioritize.

So, fast forward through the breast cancer experience, this spring I decided I needed to get back to my mobility issues. This time I chose to go to the international medical care center that had done DaddyBird’s angioplasty procedures. They had done good work with little hassle. So, after an initial consultation with a neurologist, he recommended I be admitted to the hospital for 5 days to have thorough testing done.

It was a tight squeeze at this time of year because one of my library assistants was leaving for good and I still hadn’t hired a replacement. The end of the school year is approaching, so we are in the midst of getting textbooks back. A busy time.

So, into the hospital I went and the tests began. Another electromyogram, this time done much more professionally and thoroughly. They tested both legs, both arms, and my head. So fun having electrode pins stuck into one’s scalp. They checked my heart, my arteries, my abdomen, my head, my back, etc. On one morning they took 12 vials of blood for testing. All told over the course of 11 days, I think they took 20 vials.

I mustn’t leave out the most crazy test. They didn’t tell me what it was for. I knew I was in trouble when I was wheeled in and saw the machine. It was a chair, not unlike an astronaut’s chair with lots of straps, and it was mounted on a big wheel. They were going to take me for a spin. The technician strapped me in, but not very tightly. My head was secured and black out goggles applied. She told me to keep my eyes open. Then she said that I would be moved quickly, but not too fast. Don’t worry. That is what happened. Unfortunately, she had strapped me in so loosely, that I was banged around in the chair. Not fun for someone with fibromyalgia. I passed the test, whatever it is, but I won’t be joining NASA any time soon.

By day three they confirmed that I had peripheral neuropathy, but cause or specific type was still unidentified. A team of doctors were working on my case, so there was much discussion and different opinions.

Day four was the spinal tap. That is a scary thing to have done, but the painful parts were the local anesthetic shots and the pain after the shots wore off. Also, there was the challenge of getting into a fetal position and holding still. We are just poking into your spinal cord, relax, don’t move.

The tests from that were all normal. That was good news as things like multiple sclerosis would have shown up. Glad not to have that.

By the start of the second week, they decided it was probably Chronic Inflammatory Demyelinating Polyneuropathy OR Vaculitic Neuropathy. The treatment is same for both conditions, so it is a bit moot as to which label we put on it. A 5 day course of IV corticosteroid treatment began. More blood tests, another MRI, and daily exams.

Finally released after 11 days, I will continue to take medications for another month. Will go back for a checkup three weeks from now before summer travel. The symptoms came on over the long term and reversal will take some time. Also, because I have had this condition for so many years undiagnosed and untreated, some of my nerves may have died and there is no coming back from that, so recovery of mobility may be limited. I will take what I can get.

A few cultural notes on being in a Chinese medical facility – English communication is always the big obstacle. Each doctor and nurse has a different level of proficiency. The young female doctor had the best English and was quick with a translation app to make sure medical terms were clear. That was helpful. The rest of my information came from the internet – checking medication side effects, condition symptoms, treatment options, etc.

In China, there is little yielding or waiting for others. For example, people who want to get onto an elevator will wait right in front of the doors and when they open immediately try to push their way in without considering that someone might want to get out and make room for them to get in. The same applied to exam rooms. As soon as the MRI room door opened, my helper had me up and walking in without waiting for the previous patient and helper to exit the room. There was not enough room for four people to pass.

As an inpatient of the international medical care department, I had the uncomfortable experience of being wheeled through a waiting room where about 80 women were waiting for ultrasound tests. I was in and out in about 5-10 minutes. This happens frequently. Foreigners are moved to the front of the line.

Having been through all of this, my recommendation for anyone with a serious illness or a mysterious condition, skip the local “hospital” and go straight to an international care facility connected with a large, well respected hospital. I hope this will be our last experience with major illness. I’ve probably just jinxed us.