New here, many questions
AnonymousMay 12, 2013 at 9:44 pm
This is my first post, will try to keep a very long and complicated journey, as short as possible. 14 years ago, after a few unexplainable rib fractures, I was diagnosed with a severe osteoporosis. Very unusual, since I was a 39y/o male. i started receiving treatment for the osteoporosis but eventually developed fatigue, weakness, was always tired and in need of a lot of sleep. Things gradually got worse to the point that eating made me tired. After a viral infection in 2002 I developed, for the first time, neuromuscular symptoms. My legs became weak, my calves painful, walking became difficult, I had tremors in my hands, etc. After visiting several renown neuromuscular centers, as well as many specialists, my diagnosis remained a mystery. All labs were normal, two muscle biopsies were neg, as well as CTs, MRIs, etc. Eventually, by late 2003 ( unable to walk, barely able to stay awake, having lost 60 lbs, had a severe arrythmia, etc.) I visited a geneticist who in less than 30 min diagnosed a severe Carnitine Deficiency. I was hospitalized for IV Carnitine followed with high oral doses. After 4 months, for the first time in years, I was fully awake, quite active, gaining weight and osteoporosis improving. I was able to walk again. However, leg weakness, fasiculattions, numb feet, tremors, clumsy hands persisted for another year or so. Eventually went back to work ( on my life saving Carnitine) and back to a normal life, which included weight lifting in a gym 5 days a week. During those years I grew afraid of colds which would bring back malaise, fasiculations and some weakness on my legs. But never for more than a few weeks. Also when I traveled and walked for several hours a day (my job is quite sedentary) I would get some pain in my upper calves and my legs ( always under my knees) seemed to buckle. On other trips, however, I was able to walk for hours (10-12) with no symptoms whatsoever. Trough all these years the Internist, Genetisist and Neurologist attributed all symptoms to the Carnitine deficiency, which somehow made no sense to me, specially since I had read hundreds of hours about this genetic disease. The post viral onset suggested an immunologic etiology, as well as the on and offs.
On March 2012 I got the flu. Since then things went, once again downhill, progressing slowly. Leg weakness, pain in upper calves, numbness in my feet, eventually progressing to my hands and arms. Since I never developed the fatigue, weight loss, lethargy ( all characteristic of Carnitine deficiency) I decided, against all physician’s opinions, that my neuromuscular symptoms had nothing to do with my genetic disorder, and that most probably had an autuinmune cause. That’s when one night, 6 weeks ago, I entered into my browser “polineuropathy and autoimmune”. To say the least, I was in shock as I read about CIPD. Two days after, I was in my Neuros office with the info, my theory that I had two different, coexisting diseases. I insisted, almost begged, for an EMG. Results showed slow conduction in both arms and legs, F wave abnormality and conduction block typical of a “moderate” CIPD. Reflexes were very diminished ( or absent) and eventual CSF testing showed high protein. I ended my first 5 day IVIg treatment two days ago.
I conclude that concurrently with my Carnitine deficiency, I had an episode of CIDP back in 2002 – 03. I went into spontaneous remission, and eventually Im in a relapse since march 2012 after the flu.
All of the above (sorry folks!!) to say that I have a mixed and complicated clinical picture and thus confusing symptoms which lead me to some questions:
Anyone else with tinnitus (ringing ears)?? Makes me crazy.
My tremor is at times generalized, whole body. Some days I wake up shaking in bed, anyone else?
My memory loss is at times scary ( forget names, do stupid things, never remember if I did or didn’t do things) but sure it’s not Alsheimers or Dementia because my job is highly skilled and complicated and can perform perfectly. Anyone else?
I have frequent headaches. They seem to originate in my neck muscles which always seem to be stiff. Is this seen in CIDP?
On bad days or “stages” I feel all my muscles stiff to the point that everything I touch seems to also be in a tremor ( crazy?) anyone else?
Never had double vision, but its kind of blurry. At night lights are stars, not dots. Everything under my knees seems to shake since I must be having a fasiculation every second. Again, anyone else?
I am very grateful to all who took their time to read this unusually long post. Any advice/answers will be a blessing.
Wish you all the best
May 13, 2013 at 3:27 am
There is a lot of variation in CIDP. It’s certainly possible that you have two things going on at once, which would make diagnosis difficult. It’s certainly something to keep in mind. If you have unexplained symptoms, you should have tests to rule out (or not) other causes than the onitial diagnosis. The usual tests for CIDP are the spinal fluid test and nerve conduction tests. In some cases, a nerve biopsy is done to support the diagnosis.
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