Aa
anyone else with these symptoms
Started having weird symptoms in February just after seening my rhemy for joint pain and numbness in hands and general fatigue. Was having sever chest and back pain and arm and leg pain and muscle twitching along with numbness in hands and feet. He thought I had fibroymyalgia. A week after seening him i started with a blue flashing light in the outer corner of my eye. Sometimes it would be brief other times it stayed off and on all day. Went to eye doc that ordered a mri of brain. Optic nerve looked good but there were some questionable findings on the mri. Went to neuro and got an mri of neck and spin all clear of lessions. Went to new rhemy that ordered more blood and urin and excet for a positive Anachoice (tm) screen and a homogeneous of 1:640 seems to be all negative. She wants a LP to rule out CNS Lupus. I know those tests can come back negative even if you have stuff. Here are all my symptoms some are old and most are new:
Joint pain (off and on for 7 years)
back pain (since early 20's)
EBS (since 25 years old)
Chest pain/ rib pain that wraps aroundto back/upper right belly pain
muscle pain in arms and legs withtwitching--pinching feeling once in a while in arms/shoting pain
numbness in hands,legs and feet
fatigue
headaches/ ringing in ears
sleeping problems/ night sweats (about 2 or3 year)
shaking or vibrating at night or napping (about 2 years)
blue flashing light in right eye with eye and orbit pain/eye twitching
dizziness occasionally
slight nausea
numbness and tingling in temple area/tip of nose tingling and itching
dry mouth and eyes/ hazyvision up topand bottom/ blurry/ glasses not as good--just got new glasses
hair loose (started last april 08)
right hand has tremor (about 3 years)
heart pvc's and pac's (about 8 years)
while turning head towrds right get flashing and streaking lights in eyes/like going topass out-only happened 3 times since July 08
I am at my wits end with all doctoring along with the pain. My anxiety level is a 10 and it seems like rhemy and neuro think diffrently. I think rhemy thinks it's ms and the neuro thinks it's lupus. I really don't know what to do. Any suggestions would be helpful at this point. Some days the pain is so bad and others I can just go along and not be that bad. I think the muscle pain in the arms and legs is the worst pain but what scares me is the thought of going blind with this blue flashing light. I think I posted here before and someone said to check for lyme. I think I've had the eastern blot blood test a few times. Can you have all negative for lyme and still have it. How would they be able to tell? Would a lp show if I had lyme? Are these typical symptoms of lyme? I've posted on the MS forum and a very nice young man suggested I post here. Please anyone else having these symptoms. I am 40 and have young children and just want an answer so I can be out of pain and start some kind of treatment to slow whatever is going on. Help please.
Joint pain (off and on for 7 years)
back pain (since early 20's)
EBS (since 25 years old)
Chest pain/ rib pain that wraps aroundto back/upper right belly pain
muscle pain in arms and legs withtwitching--pinching feeling once in a while in arms/shoting pain
numbness in hands,legs and feet
fatigue
headaches/ ringing in ears
sleeping problems/ night sweats (about 2 or3 year)
shaking or vibrating at night or napping (about 2 years)
blue flashing light in right eye with eye and orbit pain/eye twitching
dizziness occasionally
slight nausea
numbness and tingling in temple area/tip of nose tingling and itching
dry mouth and eyes/ hazyvision up topand bottom/ blurry/ glasses not as good--just got new glasses
hair loose (started last april 08)
right hand has tremor (about 3 years)
heart pvc's and pac's (about 8 years)
while turning head towrds right get flashing and streaking lights in eyes/like going topass out-only happened 3 times since July 08
I am at my wits end with all doctoring along with the pain. My anxiety level is a 10 and it seems like rhemy and neuro think diffrently. I think rhemy thinks it's ms and the neuro thinks it's lupus. I really don't know what to do. Any suggestions would be helpful at this point. Some days the pain is so bad and others I can just go along and not be that bad. I think the muscle pain in the arms and legs is the worst pain but what scares me is the thought of going blind with this blue flashing light. I think I posted here before and someone said to check for lyme. I think I've had the eastern blot blood test a few times. Can you have all negative for lyme and still have it. How would they be able to tell? Would a lp show if I had lyme? Are these typical symptoms of lyme? I've posted on the MS forum and a very nice young man suggested I post here. Please anyone else having these symptoms. I am 40 and have young children and just want an answer so I can be out of pain and start some kind of treatment to slow whatever is going on. Help please.
Tia, I just finished about six months ago with therapy for my neck, I had the exact same symptoms. I told the Dr. it felt like I had a rope around my neck, he sent me to a rheumi who thought maybe I had lupus, took MRI's of my neck came back with arthritis. I still was in bad pain, I begged her to take an MRI of my head. I really thought something was wrong. turned out ok. She sent me to a therapist for a couple of months. I did home exercises too. I am hearing with lyme you get a lot of bad neck pain. I hope you continue to find out your diagnosis. You take care!!!!
Thank you I am going to nuero in a few minutes. I am going to run it by him but as I have said in past posts he is not the doctor for me. When I went to him and started to tell him my symptoms he said thats enough I don't need to hear any more too much for me. What the heck. He didn't even have me fill out a health history so I thought he would want to know all the current symptome. By the way I having felt right since my ablation last march. It was such a stressful time for me and since then I have been having problems. Not till Janurary did all the really bad stuff kick in but I've been a basket case since the heart thing and even started seen a councler in Janurary to try and figure how to deal with the heart thing. So i know it's true that stress triggers alot. I belive that all the way now.
If you do have lyme then steroids are not good - I would stay away from them - atleast untill you do have a diagnosis.
good luck & best wishes
gorbs x
Lyme hides well in body tissues and is hard to kill. It also develops a cyst form. It can lie dormant for periods of time then become active when the body is stressed. So it may seem that it is gone but is really dormant. People do get cured but it's a lot harder when it is late stage.
I am not sure anymore what the doctors are thinking. CNS lupus is the latest thinking. I think they are doing the ruling out. Alot of my symptoms seem to point to the cns lupus thing. Scary stuff all of this. I see the neuro tomorrow. I think I have to set up the lp which I reallllly don't want. All blood work is negative except for the homo 1:640 and the positive ANA. My head is spinning at this point. How does lyme work does it keep attacking even after treatment? I quess I really havn't read to much on it because all of the test said no. But like with any of these illnesses it looks like it comes up negative alot even when you have it.
I have heard stories about people living in areas where there are factories, chemicals etc...and there seems to be a high incidence of autoimmune disorders. It does sound like your friends clearly have MS. Is your doctor pretty sure it is lupus you have or just trying to rule things out? I know lupus can be difficult to diagnose until later in the course.
I've had only oral and it works for me. Many of the symptoms I have had are not gone now or much less.
I've had only oral and it works for me. Many of the symptoms I have had are not gone now or much less.
I wonder how much it would hurt to give me the antibiotic treatment? Or some kind of steroid treatment. I know if you have a certaint kind of lupus it can be bad. This is just getting to be too much for me. Today I started having the feeling like someone is putting their hands around my neck and cutting off my circulation to my head. That is the best way I can decrible it. Like right before you pass out that feeling.
My girlfrind that has the bad ms for 20 years has about 86 lesions in her brain and spinal cord. She has it. I don't know when they did the lp. My other girlfriend had symptoms and got admitted to the hospital and had the lp. It came back negative and she was in the middle of her attach. She is now on a clinical trial in Miami and doing very well on her treatment. She does not have as many lesions but I don't think it matters how many just where they are and what area they effect. My girlfriend with lupus had to wind up with two biobsys before they diagnosed her. She has not been doing well in the last year but she also has had it for about 20 years. And if your question is did we live in the same neighborhood? Yes we lived all right next to one another growing up. I have under active thyroid. My girlfriend with lupus has other autoammune things her brother has diabeatis and had to have his thyroid out due to goider. My other Ms girlfriend lived next to her. We lived all in a row behind a industral park that was later found to be dumping toxic waste. We all had wells. Weather that means anthing or not it just seems weird.
I am sorry you don't have answers. I know how frustrating it is. Maybe you need another antibiotic treatment. How long did the first one last? Was it iv or oral? Keep me in touch
My girlfrind that has the bad ms for 20 years has about 86 lesions in her brain and spinal cord. She has it. I don't know when they did the lp. My other girlfriend had symptoms and got admitted to the hospital and had the lp. It came back negative and she was in the middle of her attach. She is now on a clinical trial in Miami and doing very well on her treatment. She does not have as many lesions but I don't think it matters how many just where they are and what area they effect. My girlfriend with lupus had to wind up with two biobsys before they diagnosed her. She has not been doing well in the last year but she also has had it for about 20 years. And if your question is did we live in the same neighborhood? Yes we lived all right next to one another growing up. I have under active thyroid. My girlfriend with lupus has other autoammune things her brother has diabeatis and had to have his thyroid out due to goider. My other Ms girlfriend lived next to her. We lived all in a row behind a industral park that was later found to be dumping toxic waste. We all had wells. Weather that means anthing or not it just seems weird.
I am sorry you don't have answers. I know how frustrating it is. Maybe you need another antibiotic treatment. How long did the first one last? Was it iv or oral? Keep me in touch
I did get the headache but most people I know who have had it done did not. I also have low spinal pressure which was the cause of the headache in my case.
It is rare for MS not to show up on the LP. If I remember correctly, I think it's 90 or 95% of people with MS who have a spinal tap test positive for MS on LP. I also remember reading that it can be negative by LP if the person is not relapsing at the time though. Is it possible your friends who were diagnosed with MS could actually have lyme?
Lyme rarely shows up in spinal fluid. But if you decide to have the spinal tap then ask for the lyme test to be done as it is not automatic. If the doctor does not think it is necessary I would insist on the test. The LP is usually a one-shot deal so you might as well have every test possible run on the fluid.
I don't know whether I have lyme or not. I have never tested positive but I had the bullseye rash and have never been the same since. I also improve considerably from antibiotic treatment. I have had just about every neuro test you can have and still have not gotten a true answer.
It is rare for MS not to show up on the LP. If I remember correctly, I think it's 90 or 95% of people with MS who have a spinal tap test positive for MS on LP. I also remember reading that it can be negative by LP if the person is not relapsing at the time though. Is it possible your friends who were diagnosed with MS could actually have lyme?
Lyme rarely shows up in spinal fluid. But if you decide to have the spinal tap then ask for the lyme test to be done as it is not automatic. If the doctor does not think it is necessary I would insist on the test. The LP is usually a one-shot deal so you might as well have every test possible run on the fluid.
I don't know whether I have lyme or not. I have never tested positive but I had the bullseye rash and have never been the same since. I also improve considerably from antibiotic treatment. I have had just about every neuro test you can have and still have not gotten a true answer.
Thats what the rhemy wants me to do. I am afraid. I had one when I was 15 after a car accident and it wasn't pleasant. I just feel my two friends with ms and one with lupus had there lp's come out negative. Whats the point? I guess if it does show something then it was worth it but I guess the odds of being negative and having to go through that makes me question doing it. My Neuro is a little apprehensive and said they very rarely do them anymore. They would send me to the hospital to do it. Did you get the headach afterwards? So I think the rhemy is testing for cns lupus. I guess I will have to say to look for lyme. I don't know if they just do that or what. Havn't looked into it much yet. I am tiered of trying to figure out what I have instead of just haveing the doctor do what they went to school for. So do you have lyme?
Are you considering the LP? I had one. It may give you the answer you need. You can test negative for lyme and still have it like margypops said.
your symptoms do sound like lyme - the best thing to do I would say - as you have had a lot of tests - would be to find a 'lyme literate med.doc. [LLMD.] these doctors know the 'whole picture' of lyme - some times lyme has to be a clinical diagnosis - based on symptoms/history - as there are no 100% reliable tests.
as 'margypops' said there are others on this forum who will be able to give you more specific info. about the best types of tests and how to locate a LLMD. I am in the U.K. so I can't be of any 'real' help to you.
best wishes - gorbs
as 'margypops' said there are others on this forum who will be able to give you more specific info. about the best types of tests and how to locate a LLMD. I am in the U.K. so I can't be of any 'real' help to you.
best wishes - gorbs
Yes you can test for negative and have Lyme mine was negative it has gone into remission through 20 years ago when I was bitten by a Tick in UK but comes back I am having the symptoms again now for the last few months I still dont know if I have Lyme it all strated up after a Trauma I am told that ,it could have triggered it again.Others here will tell you what tests you need to ask for and you can google it for more information,Good Luck
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