48,M.In Mar.in HI,became ill.Sore throat/congestion,bright light sensitivity,tongue burning,head/ear pressure,light headed & difficulty focusing(such as after an alcohol drink),perhaps due to head pressure,weak.Week later,develop burning pain in balls of feet when standing,& pain in fingertips when pressure applied,& calf muscle fasciculations.Other symptoms got worse.Saw 2 neurologists in late April,& each did an EMG/NCV-normal.Normal sinus CT.A brain MRI w&w/o infusion was done mid-May & was normal except patchy high-sgnal on T2-weighted images within right mastoid air cells suggest fluid &/or mucosal thickening.The latter was dismissed by neuro.Diagnosis by both-small fiber peripheral neuropathy(PN)/benign fasciculations.Numerous blood & urine tests were normal(CBC,metabolic,B12,Sed,TSH,ANCA,heavy metals)Saw ENT in June,& no fluid,but put in ear tubes-did not help.Since mid-June,PN & tongue pain & head pressure much worse 24/7.Developed in mid-June feeling of being hot 24/7 when ambient temp not,& am not hot to the touch or flushed.Sweating OK.ENT thought eustachian tube dysfunction for ear pressure,7/1/05 gave prednisone(60mg 2 days,tapering 10mg each 2 days)& Ceftin.Ended prednisone and Ceftin 7/12.Then head pain worsened(worse pressure pain but also random sharp pains)& worse hot feeling-head,legs,arms,even trunk feel like on fire,but cool to touch.A repeat of MRI 7/14 was normal.Can't go out-too hot feeling,even hot in AC.What caused all this?Why have PN,tongue pain,head pressure worsened since mid-June and more this week? Why did severe hot sensation start in June?
I cannot give you a definite clinical diagnosis over the internet
The inital symptoms may have been a viral infection. Sometimes after a viral infection the bodies activated immune system can attack itself causing mperipheral nerve problems liek you describe. THey effect predominantly the small nerve fibers and the large ones that the EMG and NCS examine are usually normal . Of course other causes of a neuroopathy must be excluded as your doctors are doing, maybe also to include Lyme serology (for Lyme disease), serum immunofixation (for monoclonal neuropathy), anti-Hu antibodies (for a paraneoplastic syndrome) and a lumbar puncture for CSF analysis (not mentioned in your note). However in about 30% of neuropathies no definite cause is found. Headache is also a common feature of a viral infection or meningitis, and can persist afterwards. Nerves take time to heal over weeks, so one has to be patient. Of course, if it continues to get worse, and/or involve new areas, your doctors should continue to look for a cause.
Very interested in your post, I'm in UK, my mother had flu like symptoms 4 years ago, shortly after became 'shaky' inside and felt hot sensation internally. The heat sensation disappears when she lies down but returns immediately on standing/sitting. Been to Neurologist, GP's and Professor of Neurology in London. Basically, no one appears to have come across this symptom before. She is 68 years of age and has a very poor quality of life, as she lies down most of the day in order to alleviate the extreme feeling of being hot. Her temperature and blood pressure is normal 24/7. Lots of tests i.e. MRI, bloods, xrays, lumbar puncture etc. Perhaps you could email me to exchange findings in the future. Trying new drug next week hope it works! Email address ***@****
Hi, My mother is 52 years old and has suffered from neuropathy. 6 months ago, her symptoms started when she noticed she could not get up from a squatting position. She had also complained about not being able to stand for long and walk for long. She had complained about pain in her pelvic area. A few weeks later, she could not walk up and down the stairs. A few days later, when she couldn't walk, so we took her to a hospital. They quickly pointed to GBS, took an LP and put her on IVIG. By the 3rd day of a 5day treatment of IVIG, she was able to walk and move around. A week later, her condition slowly started to deteriorate again and her legs started to weaken again. Her arms and hands were functioning fine.
After 2 weeks of getting worse (her legs only), we decided to take her to the hospital again, they still believed it was GBS and therefore started her on plasmapheresis (plasma exchange). After the 5th day treatment, she still showed no response to the PE. A few days later, her neurologist decided to give her some steroids (prenisone?) and within 2 days, her condition worsened. He immediately stopped the steroids. We asked to speak to the neurologist to get a long term plan and he refused to meet with us and decided to switch us to another neurologist. In the mean while, a few of his neuro collegues believed it might be muscular. So neuro #2 inherits the case, sees us and believes it mostly resembles CIDP, so we started her on bi-monthly dosage of IVIG at home. She also recommended that we visit a neuromuscular centers.
In the mean while, her symptoms have been getting worse. A month ago, she lost the ability to use her hands (slowly progressiving getting worst). Now she can't even hold up a fork with her right hand to eat (she's right handed), she either eats with her hands or we feed her. She has recently started complaining about an pounding headache in a upper left portion of her head. Immediately right of her left temple (if that makes sense) but not in the middle of her head. It's immediately above her hairline. Today she is also complaining about pain in the joints of her fingers. We have an EMG scheduled tomorrow, but I would like to see what the opinion of others might be. Could it be something else? What other doctors (specialists) can we see for this? It's been a such a long painful period for us. Please help.
Sorry to hear about your mother. My problems also continue and are changing and are getting worse. I have seen three neurologists in the Chicago area and have now scheduled an appointment at Cleveland Clinic. The reason I relate this is that I strongly believe that one should push to see as many doctors as necessary until you are satisfied with a diagnosis. Suburban or small-town neurologists are generalists and don't see that many unique situations. One of mine admitted this - that he sees few patients with peripheral neuropathy, and those that he does are typically diabetics. Large-city/medical center neurologists vary significantly in their areas of expertise and their overall competency levels. Keep looking for an answer. Best wishes to you and your mother.
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