A Physician with CIDP – My Story (long)
October 3, 2015 at 7:57 pm
Thought I would share my story as others might benefit from it. I would like to lay out the progression of symptoms leading to my diagnosis. First, some background information. I am a family physician and have been in practice for many years and am in my mid-forties. I have been in relatively good health over the years. Growing up, I was very active in swimming and martial arts with 23 years of experience even while I attended medical school. I had gained a lot of weight over the past 10 years after moving to a new city but I generally felt good and had no problems.
In July of 2013, I was on vacation in a cabin in North Carolina with my family and woke up with a rather interesting bite on my thigh. It looked to me like a target lesion which is commonly associated with Lyme disease. I returned home and it seemed to worsen so I went to a local doctor I knew and was placed on doxycycline for 10 days which is the preferred treatment for Lyme disease. No testing was done. I finished the antibiotics and nothing more came of it.
I continued till around October of 2014 with no problems. I noticed a particularly interesting phenomenon. I had about 2 days with severe attention problems. I would start to look something up on the internet and within one minute, I would forget what I was looking for and why. This was astounding and bothersome to me as I generally pride myself on my memory and concentration. It got so bad that I thought I had to write things down as I thought of them to make sure I would not forget. I was not seeing patients at that time. Over the 2 days, it went away and I thought nothing more of it. Then at the end of October, there was a day I was feeling pretty bad. I had some muscle aches and fever and very bad fatigue. I went to the bathroom that day and noticed a bunch of blood in my urine. I decided to go home early and had another episode of blood in my urine and my wife told me to go to the walk in clinic. I went to the walk in clinic and when I got there I was in for a big surprise. My blood pressure was 240/150. I have never had high blood pressure before. Of course, this startled the ER doctor who decided I could go home as I had no other concerning symptoms and no other lab abnormalities. He sent me home on Lisinopril and had set up an appointment with a cardiologist for my blood pressure and I was in the midst of getting a new primary care physician.
I started the other medications and saw the cardiologist who proceeded to start me on 2 other medications because my blood pressure was so high. I then got into my primary care doctor’s office who also referred me to a sleep specialist to rule out sleep apnea. I started all of the new medications.
I began to have some very weird symptoms after that. The biggest symptoms I began to notice over the next few months were severe fasiculations (muscle twitches). I would get twitches in the muscles of my inner foot, my calf, my thighs, and my biceps and rarely in my abdomen. Never in my face. They would come and go at times and last for a long time. It was very irritating and pronounced. When I went to bed, I noticed on multiple nights that my feet would repeatedly snap up and down without my control (myoclonic jerks). It kept me up for many hours at night. I would get sharp pins and needles sensations in my feet and my legs would jerk and random times. I had a peculiar sensation that I can’t describe well… a sense that I was vibrating all over my body. When my limbs would touch something I didn’t expect, they would jerk back uncontrollably as if the reflexes were hyperactive. I would reach for things and notice that my hand would not get where I wanted it to such as when I went to close a door without looking at the door handle. I had several episodes where I would be typing on my computer and my little finger on my left hand would not respond like it should.
I saw a pulmonologist and had a sleep study and was diagnosed with sleep apnea and started on C-Pap. On top of this, my blood pressure seemed to be starting to respond to the medications as my blood pressure readings at home showed it in the normal range. In February of 2015, I started to notice lightheadedness in the evening when I stood up. I figured that it was that I was on too much medication and that the C-pap was working too well. I talked to my cardiologist and he decreased me to two medications. The symptoms continued. I went on a camping trip with my son who is in the scouts. We did a 5 mile hike and while I am out of shape, we had done a previous 10 mile hike the year before and I had not problems. This hike was horrible for me. I had severe fatigue. I could not keep up. My thighs were weak and rubbery and I felt that I had run a marathon even before I started. I was quite embarrassed that the other fathers in the scout troop had to wait along with me as I finished the hike. They were all concerned. When I finally got to the car, I had a 20 minute episode where my vision became whited out and blurry. I was very concerned but it seemed to clear and I thought I must be horribly dehydrated. I ended up driving home.
I then began to have syncopal (passing out) episodes when I stood up in the evening. I passed out one time getting up from bed and had hit my back and shoulders on the bed and floor. Thank God I didn’t hit my head or neck in the fall. I saw the cardiologist who took me off of everything but Lisinipril.
I finally noticed a ratcheting like motion to my left hand when I flexed my wrist and decided that I needed to get more of a work up. I went to my Family Doctor and told him what was going on. I showed him my abnormal left wrist motion and he immediately referred me to a neurologist that I personally knew. The muscle twitching and foot jerks continued and were only relieved by a low dose of Klonipin right before bedtime (I didn’t want to start it but I could not sleep). The fasiculations are the symptoms that bother me the most of any of the symptoms.
Of course, as a physician, I was thinking the worst… AlS, Parkinsons, multiple sclerosis, Hungtinton’s, etc. Of course I was thinking the worst as too much knowledge is not always a good thing. I had even made up my mind that I had benign fasiculation syndrome. I went to see the neurologist and he examined me. I don’t think he took me as serious at first because I didn’t have any muscle twitches in the office when I saw him (figures as it would come and go). After examining me, he told me that I didn’t have any of these things (what a huge relief) but that he would send me for an EMG and other blood work. To get the EMG, I had to see a different neurologist. I had prepared as well by taking video of my muscle fasicualtions and was ready to show this new neurologist. When I went into the neurologist, he was gathering history from me and he noticed that I didn’t have hair on the tops of my feet anymore. He asked me about that and I told him that I thought it was due to my socks and shoes. He said he didn’t think so and that it could be a sign of a neuropathy as the hair follicles need a normal functioning nerve to grow. He then noticed that my left calf was smaller than my right (atrophy). I didn’t notice it till he pointed it out. He tested my reflexes and they were decreased in my legs, particularly on my left. Additionally, my left scapula was winged which indicated the nerves to them are not functioning correctly. He viewed my video of my muscles doing their dances in my feet (looked like a bag of worms under my skin). He did the EMG and sure enough, it had the picture of a demyelinating process (which is what CIDP does). He told me that he was sure I had CIDP. I had learned about CIDP in medical school but I had never seen it in practice and didn’t really remember what it was.
My two neurologist conferred and recommended that I go to the hospital to have a lumbar tap and be considered for IVIG therapy if my lumbar tap was abnormal. I was admitted and had the tap and MRI of the brain and spine. The tap showed an elevated protein which confirmed the diagnosis of CIDP and I was started on IVIG. My testing for Lyme disease was negative and I am still waiting on other testing like that GMI antibody testing.
I have received 2 doses of IVIG as an outpatient around 4 weeks apart and am feeling much better. I still have episodes of muscle fasiculations, especially when I am stressed out or out in the heat but the are less noticeable and don’t affect me as much. My strength has improved as well as my reflexes. The plan it to continue IVIG for at least 6 months then as needed. Looking back, I think the high blood pressure and syncopal episodes (passing out) was more likely due to the dysfunction of my autonomic nervous system by the CIDP than due to regular high blood pressure and the response to medications and c-pap. This concludes at where I am right now. I am in the midst of scheduling my 3rd IVIG treatment. I am hopeful in many ways at it seems my case was caught early and earlier intervention has better outcomes and my symptoms improve with the treatment. I am working hard on walking every day and trying to drop some weight but this experience has given me new perspective to those that are dealing with this disorder. It is my hope that by sharing my experience, it can help somebody else.
October 4, 2015 at 8:39 am
Forgot to mention that about 2 weeks after my first IVIG therapy I got in the hospital, I developed a red rash on the palms of my hand that was itchy and peeling. It looked like dishydrotic eczema. I found out that it is not an uncommon drug reaction. http://www.ncbi.nlm.nih.gov/pubmed/16490849 . My IVIG brand was changed to Gamunex and I was given solumedrol, a steroid, with the second dose. I had no recurrence of it.
October 12, 2015 at 10:54 pm
I am sympathetic with your situation and similar to you I was diagnose with CIDP just this year but a little different scenario. I have a question for you: did the doctors told you to be on IV for just 6 months? What about after? I am on my 5 or 6 treatment and I am having good results, thanks God.
I would appreciate your response
October 13, 2015 at 1:34 pm
This is a bit complicated to answer and I just wanted to make sure that if anybody reads my response, that they understand that while I have significant medical knowledge, I am not a neurologist and that I am posting a description of how I came to a treatment decision for this with my neurologist. I will start by saying that because CIDP is a fairly rare condition, there is not a lot of great scholarly studies on treatment and such. There are many protocols published and several treatment options. The two best paper I can find on the subject is from the New England Journal of Medicine http://www.nejm.org/doi/full/10.1056/NEJMra041347 and from Dr. Gorson http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3487533/ . I would also suggest that you view the video that Dr. Gorson did for the CIDP foundation found on this site if you have not already done so. It is located at https://www.youtube.com/watch?v=5cLbFKc3Vkk as well. Bottom line is that many of the protocols for IVIG (other treatments vary) suggest getting IVIG every 3-4 weeks for the first 6 months. Most patients see an improvement in symptoms by usually the 3rd treatment. A significant number of patients after the 6 months go into a remission where they don’t need the IVIG but there is also a subset number of patients that will continue to have progression in their symptoms. A lot of factors are involved in this including the time they have had the disorder and the nerve damage already associated and others. Some patients also do not respond as readily to IVIG and may respond to other treatments better. The duration of the effect of IVIG therapy is somewhere between 6-8 weeks given the half life of the medication.
So, given this information, I had a long discussion with my neurologist. We decided that I would do the IVIG around every 4 weeks for the first 6 months and monitor the symptoms. I have already had improvement of my strength and return of some reflexes so I have had a positive response. After the 6 months, the plan is to increase the time between dosing by a week each time to get within the goal of no symptoms between IVIG doses that are 8 weeks apart which would be cause to call it remission. It could be that I am in that group that does not get to this point but given my response so far, I am hopeful. Although a long response, I hope it was helpful.
January 26, 2016 at 1:51 pm
Your symptoms mirror mine, all of them. I’ve was diagnoses with CIDP 4 years ago. I had similar treatment routes and drugs and my CIDP subsided to manageable levels. I’ve had CIDP for probably 20+ years, but it was diagnosed as peripheral neuropathy; because of that muscles withered, faccissulations still bump & grind just below the surface, and axonal damage brought weakness and a foot drop.
However, I found that constantly swimming laps, in my opinion, has kept the CIDP from flinging me into a wheelchair or casting me to a walker. I use a cane.
What frustrates me is that the medical establishment worldwide and experimental medical minds never seems to dig deep into the clinical realms to find a definitive reason for the disease existing in the first place, or the why & how the few therapies/treatments work. Of course they do did as deep as money allows, but so far I’ve not read of breakthroughs (except HSCT) to alter the course of CIDP.
You of all people know that some disease are relentless in the chronic monstrosities that they inflict on us. I curse this disease everyday, as there is no sugar-coating when CIDP elevates into extreme chronic pain, therapies become useless and treatments fail.
I’ve fought CIDP for 20 years and it is slowly getting the upper hand on me. I call it ALS Lite.
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