Symptoms started about 2 wks after a Lone Star tick bite. Includs migratory pain in arms and hands below elbow, legs and feet below knee.ER Dr quessed Lyme , started 10day treatment Doxycycline 200mg 1 time daily.After 5days treatment inproved for about 2 days then pain came back.ER refered me to another Dr that prescribed Amoxicillian 300mg 3 times daily(befor bloodwork) and did blood work for Lyme and RMSF.Both test negative.After about 5 days of Amoxcillian symptoms once again inproved for about 2 days and then came back. Being that I was on the Doxy prior to haveing the bloodwork, could the test had come back as a false negative test? Is the Lyme test the same test for Neurologic Lyme Disease as found at http://deppathology.chat.ru/Neurologic%20Lyme%20Disease.htm Ive seen 3 MDs and all seem to be stumped.I contacted the lab tech at a local hospital and he stated he had never heard of the Neurologic Lyme.My symptoms seem to be like those of MS but after having read the article at the above site, it seems like it is the exact thing Im going thru.Should I print and take this article to one of my Drs? All the MDs have stated its not diabetes/blood pressure/arthiritis/carpal tunnel. One of the Drs stated he would refer me to a Neurologist, Ive called his office 3 times and yet to have a call back. I've been going thru this since the first week of June 05. The symptoms in my legs seem to be subsiding, arms seem to flare up after physical activity.
I would appreciate any advice. Thanks for your time.
Lyme disease can commonly cause neurological problems. There are several stages to Lyme disease - the first beign a rash which is red and hollow in the center. Then 3-5 weeks after the bite one can see joint and muscle pains, more rash, facial nerve paralysis, and a mild meningitis. Weeks to months later one can see joint swelling/arthritis and peripheral nerve problems and a form of dementia. All, none, or some of the above can occur - ou may have hada mild peripheral nerve or spinal cord sensory form of the disease. Over time it should be reversible. Testing for Lyme is difficult and unreliable. With the above symptoms only and negative testing though it is unlikely that it was Lyme disease - you may have had some other viral illness that affected teh nervous system also. Unfortunately no treatment is avilable for such but it does resole for the most part over time. I cannot be more specific in your case as I cannot give you an actual diagnosis over the internet.
Brief explanation of the pain. Migratory = My finger(s) may burn or tingle or go numb for a few minutes, then it seems to move to my lower arm or to my legs or feet.Arms and hands seem to have mild pain all the time,pain seems to ease off with activity but a hour or so after activity pain and symptoms come back 10 fold. Legs and feet did the same but now seem to be getting better.
One of the 3 Dr's did prescribe me Neurotin 300mgs 3 times daily and guaranteed me Id start feeling better in just about 2 weeks if I took the med and signed up for his "Wellness" program. The program consisted of (passive excersice treatments) in his office 3 times weekly all for the low cost of $4800 for a 10 wk course.He never told me what kind of problem I had, and requested payment in full befor treatment. (No Insurance). When I mentioned that I thought that price was sorta steep his assistant dropped the price to $3600 if I would pay at that time with a credit card.(Needless to say I walked out of his office and will never return)
Sorry one other thing. I have NO pain while sleeping.I do not awaken in the night with pain. I have NO pain when I first awake. However approx 10 to 30 seconds after awakening, the pain/synptoms start. Thanks
Hi there, this seems exactly the same as what's happening to me and I have been told I have small fibre neuropathy. Mine started in the feet then legs and now hands and hip. Burning is very bad but mine does wake me in the night and I have to stick my feet in a bucket of ice water - all very strange. May I ask how old you are - Mine started when I was 42 - now 46. I am now just starting Neurontin for the second time. The first time I found the side effects too much to stand.
My burning sensation is not bad, just a mild sensation.Does not last long maybe minutes or seconds.
Cold water will actually make the sensation go away in my arms and hands(within seconds), however ice packs seem to do nothing for it.
Cold water intensifies the feeling in my legs,so much so that it feels as if Im pouring scalding water on them. This feeling will only last for seconds and then everything seems fine.All of the symptoms in my legs seem to be going away as time goes by.
Seems to be an illness no one can pin down.
Saying a little prayer for you, hope you get to feeling better.
Hi! Lets hang in through this problem together. I have polynueropothy and have total numbness in feet and hands. Saw a nuerologist yesterday and was told it was probably from diabetes. I am 55 and also have systemic lupus. He put me on Neurontin 330MG 3x daily. He was quite sympathetic and a wonderful bedside manner while telling me that there is no cure and that it will progressively get worse. I am not ready to settle for "getting worse" in this stage of my life. I will be thinking of you as I start my reasearch on what seems to be a very perplexing situation. God Speed
My husband has CIDP which is the chronic Guillan-barre syndrome. His first symptoms were numbness and tingling in his hands, feet and legs. You might want to ask your neurologist because it's treatable. However, it depends on how the person reacts to the treatments. We learned that everyone has different treatments.
I just fell upon this website and cannot believe what I am reading. I am 42 yrs old and just this last April something happened to me. I began to have absolutely horrible quad pain and pain in my left upper arm. It went on to be more of a pins and needle sensation and tight wierd pain over my forearms. I have joint pain also. I have seen a neuro who put me immed. on high dose steroids...MRI is neg. for anything odd I suppose. I have had so much blood work....and it is all neg. I just want my body back. I am a runner who cannot do much anymore. Going to work and doing things around the house definetely aggravates the symptoms. I do not wake up at night with any pain. I actually start my day out Ok and then whatever is "lurking" slowly rears it's ugly head as the day progresses. Any ideas????? This really has hit me like a ton of bricks and will not go away.
Went to a formal event on Saturday, Sept. 17, and wore higher than usual heels (2-3 inches). The next morning, I awoke and noticed that the baby toe and the two toes next to it (on both feet) were numb. I attributed it to the fact that I normally do not wear heels, and this would soon disappear. I awoke again this morning with the same symptoms...three toes on each foot are still numb, and even though they have been massaged, the numbness has not gone away. This is the third day with this strange numbness. There is no pain, but I do not know what I can do to relieve this sensation, "lack of, thereof", in both my feet. I am going to a chiropractor tomorrow in hopes that maybe he can help me in someway. Any ideas on what this is, and will it go away, and how soon?
Hello. Can you please tell me all of the symptoms that you husband has now, with the Guilliam-Barre syndrome? You said it started in the hands and feet? Can you tell me what the symptoms in his legs was/is? Thanks for any help!
As I read through these notes and more from another forum I realize I am not alone. It's comforting yet depressing to know that we suffer from this awful pain and there is no help. The only way I can actually decribe my pain is by saying I feel I am slowly burning inside and out. Although some of you have these feelings in your face I have not read that anyone is experiencing it also in their eyes, throat and nose. My pain started in my hands and arms and then just progressed within 2 weeks. My entire body inside and out is on fire. I feel so alone and I don't want to constantly complain so I try to keep it inside. Although my husband is supportive he doesn't know how I feel. He thinks I feel better because I wash the dishes or kid around. This pain is CONSTANT and I can't take it anymore. Always bad but sometimes worse if that is such a thing. I feel sorry for all of you but someone, somewhere must have an answer and treatment. I hope and I pray that it is soon.
Like all of you I have been through the ringer of tests and to no prevail.
Keep the faith and I will keep in touch if I find out anything new.
Hi there! I also suffer w/ Bad burning of the feet, legs and lately hands, also have numbness in legs and feet and sometimes hands, and It all comes and goes, very very odd! this all started in march 05, and its still hanging around and doesn't seem to wanna go away! I am awaiting MRI of spine and I have to get a bunch of bloodwork done too, my Neuro said he thinks I have some form of neuropathy but doesn't know whats causing it and what extent the damage is, I also am getting an EMG done in early november, so we'll see if anything comes back positive! It seems like the cold weather really aggravates my symptoms and makes the burning twice as bad..and my legs feel RAW like when I wear jeans, it feels like theres sand paper rubbing them..very uncomfortable feeling!! I'm sure alot of you can relate!
Know you are not alone, I'm 33 and I feel sometimes my life is over...the burning is just to much sometimes..
WOW, TO THE LADY WHO HAS THE BURNING IN HER EYES, I HAVE IT TOO, BUT THAT IS A SYMPTOM WHICH I HAVE HAD ONLY IN THE PAST 6 MONTHS.
MINE STARTED IN MY LEGS, I HAD AWEFUL CRAMPING, THAT WAS BACK IN 2000, TWO YEARS AGO I HAD MILD TINGLING, BURNING, AND COLDNESS PRESSURE ACROSS MY FOREHEAD, i HAVE MIGRAINES. IN THE LAST SIX MONTHS I HAVE HAD TINGLING, WELL MORE LIKE SEVERE PRICKLING DOWN MY SPINE, IN MY LEGS FEET, HANDS. I EXPERIENCE TINGLING IN MY FACE, NOSE THROAT. IT IS THERE ALL THE TIME, AT THIS MOMENT I AM ON NO MEDS. I TOOK AMPTRIPTYLINE FOR TWO YEARS FOR CHRONIC PAIN, AFTER TRYING FLEXERIL,AND SO MANY OTHER MUSCLE RELAXERS, AFTER TWO YEARS ON THE AMTRIPTYLINE I STOPPED TAKING IT, COLD TURKEY. I HAVE TWO MAYBE THREE THINGS GOING ON BUT I HOPE THAT THE DOCTORS CAN CONNECT THE DOTS. I AM SENSITIVE TO MOST MEDS, THEY WILL ELEVATE MY HEART RATE AND LOWER MY BLOOD PRESSURE, IT HAS BEEN DISCOVERED THAT I HAVE VOCAL CORD DYSFUNCTION AND NOT ASTHMA, WHICH IS VERY MUCH OVERLOOKED CONDITION, MANY PEOPLE GO TO THE EMERGENCY ROOM EVERY DAY AND HAVE BREATHING DIFFICULTIES AND ARE TOLD ITS ANXIETY OR IN THEIR HEAD, SO TO SPEAK WHEN IN FACT ITS A MOST SERIOUS CONDTION IN SOME PEOPLE. CAN BE AGGRAVATED BY GASTRO REFUX, STRESS, ASTHMA, YOU CAN HAVE VOCAL CORD DYSFUNCTION AND ASTHMA, JUST COMPLICATES THINGS BECAUSE I DON'T RESPOND TO INHALERS, MY VOCAL CORDS CLOSE.
HYPERVENTILATING CAN CAUSE TINGLING OF COURSE, BUT I'D LOVE A DOCTOR TO TELL ME THAT IT CAUSES MY TOES TO TINGLE 24/7. I THINK I WOULD POSSIBLY EXPLODE BREATHING THAT FAST TO GIVE MYSELF PINS AND NEEDLES IN MY TOES. HA HA
ANYWAY, JUST REMEMBER WHEN YOU GO TO SEE A DOCTOR IF YOU HAVE A HARD TIME EXPLAINING YOURSELF, OR SEEM TO OVERWHELM THEM WITH A LIST OF SYMPTOMS, WRITE THEM DOWN, WRITE THEM A LETTER EXPLAINING HOW IT STARTED. YEAH WE ALL GET BRAIN FOG, FREEZE WHATEVER WHEN WE ARE STRESSED, ANDS ITS SO FRUSTRATING TO HEAR THAT EVERYTHING IS NORMAL, ESPECIALLY WHEN YOU FEEL LIKE CR*P.
REMEMBER THAT SOME OF THE PILLS THAT YOU TAKE CAN CAUSE TINGLING, BURNING, READ THE RX DESCRIPTION, I KNOW SOME OF THEM CAN BE A MILE LONG OF SIDE EFFECTS, BUT HEED THE WARNINGS, YOU COULD BE SOME OF THOSE PEOPLE WHO ARE EFFECTED TAKING THOSE DRUGS.
IF I HAD LISTENED TO THE DOCTOR ABOUT AMPTRIPTYLINE MAYBE IN A FEW YEARS I MAY HAVE SHORTENED MY LIFE, BECAUSE WHEN THEY TOLD ME YES BUT THE MEDICINE IS HELPING WITH THE CHRONIC PAIN, TINGLING ETC, YEAH BUT WHAT ABOUT THE FAST HEART RATE, LOW BLOOD PRESSURE, WELL WE ARE NOT SURE THATS CAUSING THE FAST HEART RATE AND SYNCOPE (DUE TO THE LOW BLOOD PRESSURE. MY HEART RATE WAS IN THE 60'S BEFORE TAKING IT.)
I ASKED A DOCTOR WHAT I SHOULD DO, THEY TOLD ME TO HAVE A PACE MAKER. TWO DAYS LATER I STOPPED THE MEDICINE. MY HEART RATE IS NOW IN THE 60-70'S AGAIN.
VERY LONG STORY SHORT(SORRY) BUT I FIND IT HEARTBREAKING TO HEAR SOME OF YOUR STORIES.
BE MINDFUL OF THE DRUGS THAT THE DOCTORS PRESCRIBE YOU.. IF YOU CAN WHEN YOU ARE DIAGNOSED GET A SECOND OPINION. AND DON'T GIVE UP.
MIGRAINES CAN CAUSEE ALOT OF THE SYMPTOMS THAT THE YOUNG LADY WITH THE BURNING EYES. BOTH MY SISTER AND I SUFFER FROM THEM, SOME OF THE THINGS THAT HAPPEN TO ME DURING AN EPISODE IS SCARY, LIKE SLURRING AND NUMBESS IN MY HEAD, TINGLING ETC IN MY NOSE, BUT YOU ARE NOT ALONE, I HOPE THAT YOUR HUSBAND BECOMES MORE SUPPOTIVE OF YOU, PLEASE COMMUNICATE WITH HIM, IF HE LOVES YOU HE'LL LISTEN, BREAK DOWN IF YOU HAVE TO, NO ONE WITHOUT A HEART IS GOING TO IGNORE YOU. ASK HIM TO PUT HIMSELF IN YOUR SHOES, DESCRIBE YOUR SYMPTOMS AND HOW IT IS AFFECTING YOUR ABILITY TO FUNCTION ETC. GOD BLESS YOU AND MAY GOD HELP YOU.
Hi I was just diagnosed with Polyneuropothy. How do you get this? I am only 30 years old! I don't have a tingly or burning sensation. I have chronic pain while trying to go to sleep, and during the day only in my legs. At first my Doctor diagnosed it as RLS. The Requip was not working. I'm not sure if I trust my nuerologist. Could this diagnosis be correct, and if so what causes it?
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