Aa
What the ***** do I have? MS? Fibromyalgia? Dementia @ 34 yoa
I have had pain in my joints, hips, shoulders, wrists, ankles, in decreasing order of severity. Sometimes I have numbness, tingling and shooting pain from my pinky and ring shooting up to my elbow and along the same outer pathway from my smaller toes toward my knees. I've lived with this for seventeen years, it gets worse in the winter. Yoga helps. Warmth helps. I haven't had regular medical care but have had several doctors quickly call my joint pain fibromyalgia and send me on my way with whatever pain medication. I've also been spacey all my life, forgetful. Clumsy. I went to my GP to ask if I could have ADD. He prescribed Zoloft because I was still breastfeeding my 10 month old son and he said it would be safer.
However, November last year all my symptoms came to a head. I had one glass of wine (not unusual for me), soybeans and some popcorn, became extremely nauseous, dizzy, projectile vomited everywhere, and thought I would just go to be and feel better in the morning. I woke up just the same in the morning, with the addition of the worst headache of my life. I had anomia, aphasia, vertigo, extreme trouble concentrating, and problem solving, extreme dizziness and nausea. My GP sent me for a CAT scan which came back negative, he gave my a corticosteroid injection which helped temporarily, but all the symptoms came back as the pain wore off. For two weeks I felt like an Alzheimer's patient, like I was literally a few memories away from not being able to find my way home if I left the house. There was a pain in my right eye for two months which waxed and waned between dull and throbbing to stabbing and incapacitating. My neck was amazingly painful and stiff. Blood test, however seemed normal, Finally after months of complaining to my GP and still not feeling right, I was sent for an MRI. That came back abnormal: "periventricular white matter in the bifrontal horn" and "patchy signalling otherwise noted in the bilateral cerebral hemispheres" "Most likely MS, or other demyelinating disease, or even possibly Lyme disease or vasculitis." My GP told me I had MS and sent me to a neurologist. (That last sentence is really about ALL he said to me.)
Now the neurologist says that he does not believe my MRI is as impressive as the radiologist made it sound. After many, many tests: blood tests, a transcranial ultrasound, a carotid ultrasound, an EEG, an ENG, an MRA, And finally a lumbar puncture which found no oligoclonal bands in my CSF, he says he doesn't know how else he can help me, and he doesn't think I have MS. He has recommended that I see an allergist because on my own I have realized that soy and MSG seem to make my headaches worse.
Ugh? What do I do now. Just forget it all. Pretend those three months of incapacitation didn't happen? Pray they don't happen again? I know I should be happy if I don't have MS, but I just wish I had an answer.
However, November last year all my symptoms came to a head. I had one glass of wine (not unusual for me), soybeans and some popcorn, became extremely nauseous, dizzy, projectile vomited everywhere, and thought I would just go to be and feel better in the morning. I woke up just the same in the morning, with the addition of the worst headache of my life. I had anomia, aphasia, vertigo, extreme trouble concentrating, and problem solving, extreme dizziness and nausea. My GP sent me for a CAT scan which came back negative, he gave my a corticosteroid injection which helped temporarily, but all the symptoms came back as the pain wore off. For two weeks I felt like an Alzheimer's patient, like I was literally a few memories away from not being able to find my way home if I left the house. There was a pain in my right eye for two months which waxed and waned between dull and throbbing to stabbing and incapacitating. My neck was amazingly painful and stiff. Blood test, however seemed normal, Finally after months of complaining to my GP and still not feeling right, I was sent for an MRI. That came back abnormal: "periventricular white matter in the bifrontal horn" and "patchy signalling otherwise noted in the bilateral cerebral hemispheres" "Most likely MS, or other demyelinating disease, or even possibly Lyme disease or vasculitis." My GP told me I had MS and sent me to a neurologist. (That last sentence is really about ALL he said to me.)
Now the neurologist says that he does not believe my MRI is as impressive as the radiologist made it sound. After many, many tests: blood tests, a transcranial ultrasound, a carotid ultrasound, an EEG, an ENG, an MRA, And finally a lumbar puncture which found no oligoclonal bands in my CSF, he says he doesn't know how else he can help me, and he doesn't think I have MS. He has recommended that I see an allergist because on my own I have realized that soy and MSG seem to make my headaches worse.
Ugh? What do I do now. Just forget it all. Pretend those three months of incapacitation didn't happen? Pray they don't happen again? I know I should be happy if I don't have MS, but I just wish I had an answer.
Lots of this sounds like MPS, Myofascial Pain Disfunction, which is NOT Fibromyalgia. I was treated for allergies for several years & got so sick, & demanded an allergy specialist. Took him 2 minutes to say, "It is not allergies, I believe it is MPS." I believe he is right, but good luck finding a Dr. that knows ANYTHING about it. Read online and stop taking pain meds, as they will never fix anything!! I got better with no meds, 6 months of dry needling & manual trigger point release therapy (even LESS of a chance of finding a specialist that knows these practices!) And you have to do stretches for the rest of your life, several times a day. Good luck! jules
You can find a general physician that will treat your lymes, preferably one who believes in unconventional medicine such as acupunture. Doctors from pakistan are very smart. Pain doctors wont treat you. My pain doctor wont treat me for anything, infact he is trying to take away the percocet, the only thing that keeps me from going to emergency room in pain everyday. if you cant find a doctor who will treat you, order the antibiotics on the internet. be careful i ordered some amoxcycilin found out after i ordered it, shipping will take 11-20 days. I will let you know if it helps. It says you really need long term antibiotic treatment for lymes to try to cure it or it will relapse. Do you remember the antibiotic you took? Well if after i see the pain doctors pychiatrist, if he cuts me off i will find another doctor.
I read there is a law that each person has the right to be treated for pain and if a doctor wont prescribe you narcotics he has to tell you why. In my case my doctors been prescribing me percocet for 6 or 7 years, going to a seminar is not a reason to cut me off.I really dont get it, this doctor is the director of the whole pain management center. How could a seminar have him cutting people off their meds. One guy in the parking lot was cursing the same doctor saying he had cut him off percocet after 6 years to another guy.
i will seek legal council if this happens, because i could of died from a stroke at the hospital when i cut my meds back and my blood pressure went up so high. i need the pain meds and shouldnt have to pay $200.00 -$300.00 to see a shrink to see if he thinks im depressed.
I read there is a law that each person has the right to be treated for pain and if a doctor wont prescribe you narcotics he has to tell you why. In my case my doctors been prescribing me percocet for 6 or 7 years, going to a seminar is not a reason to cut me off.I really dont get it, this doctor is the director of the whole pain management center. How could a seminar have him cutting people off their meds. One guy in the parking lot was cursing the same doctor saying he had cut him off percocet after 6 years to another guy.
i will seek legal council if this happens, because i could of died from a stroke at the hospital when i cut my meds back and my blood pressure went up so high. i need the pain meds and shouldnt have to pay $200.00 -$300.00 to see a shrink to see if he thinks im depressed.
Anamaria,
Neuro-Cognitive Lyme Disease
Lyme disease patients can experience symptoms such attention problems, short-term memory loss, depression, panic attacks, personality changes, mood swings, and/or learning disabilities. Literature on these manifestations is found below.
http://www.lymeinfo.net/neuropsych.html
Neuro-Cognitive Lyme Disease
Lyme disease patients can experience symptoms such attention problems, short-term memory loss, depression, panic attacks, personality changes, mood swings, and/or learning disabilities. Literature on these manifestations is found below.
http://www.lymeinfo.net/neuropsych.html
Yes, I have taken antibiotics a few times for a few months and guess what????? I got better. I'm better than I was. I got better a few months after taking the antibiotic the first time too. I agree llmd's are hard to find. There are none in Ohio. I had to travel out of state to get treated. This is the problem. I just can't be traveling out of state once a month. It's ridiculous. If I find a good doctor close to home I will go again. I just refuse to travel.
You would think a pain specialist would properly address your pain, not a psychiatrist. It's unfortunate you have to go this route.
You would think a pain specialist would properly address your pain, not a psychiatrist. It's unfortunate you have to go this route.
well the problem is there are very few lyme disease doctors,they are called llmd. most doctors arent firmiliar with it. i plan on seeing an infectous disease doctor, and intend to be treated for cronic lymes.i read an article by a scientist/doctor that said you need long term treatment of antibiotics sometimes years in combinations of 3 at a time sometimes.the scientist suggested 2 websites you can buy the antibiotics, so i ordered some amoxycylin. i didnt know shipping took 11-20 days. i intend to try this medicine to see if i feel better, otherwise it could be many more months before i find a doctor to start treating me for lymes.im going to start treating myself.im not going to keep waiting after years for nothing to happen. not one doctor has ever suggested i might have any type of infection, or prescribed me antibiotics.they just say you are cronic, which i know better. cronic pain stays about the same. my pain and problems continue to get worse.i am very sick and probally would of died years ago if i hadnt fought for my life, as i do everyday.
maybe the reason i have abdominal pain in my organs, is i found the tick in my pubic area. it says lymes can attack every organ in your body, as well as your joimts, muscles, brain, lungs. its in your fat cells, so antiboties cant attack the bacteria because it isnt in your bloodstream.
patsy theres really nothing like organ pain, its unreal.as bad as all my other pain is,organ pain is unexplainable. now my pain doctor is trying to take me off of the few percocets i get, because he went to a seminar that said percocet causes depression.now i have to pay hundreds of dollars to see a pychatrist for him to decide if the percocet is depressing me before he prescribes anymore meds for me.i have to be treated for my organ pain, i cut back a couple weeks ago for fear i need to save them. i ended up in bed in violent pain for 3 days, delirious, couldnt breathe, chest pains.finally after 3 days my husband took me to the hospital my blood pressure was 218/ 120. after all the tests the doctor at the hospital told me my blood pressure was so high and i was having problems breathing because i was in so much pain. i could of had a stroke.this doctor should not legally be able to cut me off my pain medicine.
have you ever tried antibiotic therapy?
maybe the reason i have abdominal pain in my organs, is i found the tick in my pubic area. it says lymes can attack every organ in your body, as well as your joimts, muscles, brain, lungs. its in your fat cells, so antiboties cant attack the bacteria because it isnt in your bloodstream.
patsy theres really nothing like organ pain, its unreal.as bad as all my other pain is,organ pain is unexplainable. now my pain doctor is trying to take me off of the few percocets i get, because he went to a seminar that said percocet causes depression.now i have to pay hundreds of dollars to see a pychatrist for him to decide if the percocet is depressing me before he prescribes anymore meds for me.i have to be treated for my organ pain, i cut back a couple weeks ago for fear i need to save them. i ended up in bed in violent pain for 3 days, delirious, couldnt breathe, chest pains.finally after 3 days my husband took me to the hospital my blood pressure was 218/ 120. after all the tests the doctor at the hospital told me my blood pressure was so high and i was having problems breathing because i was in so much pain. i could of had a stroke.this doctor should not legally be able to cut me off my pain medicine.
have you ever tried antibiotic therapy?
I agree with you about the fibromyalgia..garbage diagnosis! I also agree about the meds. I refuse to take them. Have you seen a lyme literate MD? You sound very sick.
I know about the bite. I had 3 bullseye rashes years ago. Then I got severely ill for a long time (years). It went into remission then came back again after I had surgery on my spine.
I don't particularly have abdominal pain but I have pain everywhere else. Especially muscle and nerve pain.
I know about the bite. I had 3 bullseye rashes years ago. Then I got severely ill for a long time (years). It went into remission then came back again after I had surgery on my spine.
I don't particularly have abdominal pain but I have pain everywhere else. Especially muscle and nerve pain.
Have you ever been tested for mold toxins? Dr. Schaller's book would be interesting for you.
I have similiar symptoms for 8 years, along with unbearable abdominal pain,bladder pain, organ pain.Do you have abdominal pain? I was bitten by a tick over 8 years ago. I THINK I MIGHT HAVE CRONIC LYMES DISEASE. My memory is bad, long term, i get confused, stare in space.I have also had chest pains and shortness of breathe. I had a chest exray that was clear. I think fibromyalgia is a ******** diagnosis given to people doctors dont know whats wrong with. I refuse to take antidepression medicine, lyrica,celebrex. Many of these medicines make you feel like a zombie and can cause strokes and heart attacks.
I'm not sure. That was listed as one of the other possibilities by the radiologist who originally read my MRI, along with vasculitis. I know that vasculitis, RA, and lupus have been excluded.
I'll check though. Thank you.
I'll check though. Thank you.
Have an Answer?
You are reading content posted in the Neurology Community
Top Neurology Answerers
Allentown, PA
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
