posted
Hi. I have been having symptoms for a long time now. I would say months. It started off with having pain in my calves, out of nowhere. Felt like I had just run a marathon. Was getting worse and worse, until finally I ended up going to th ER. At this point I also have swelling behind the knees. They ran a few tests and sent me home. I saw the doc the day after and he sent me for an ultrasound to rule out blood clots, which was neg. Then I started to get numbness and tingling in the legs and feet. Had me go for an MRI of the brain to check for MS, that was normal. I have also had an array of other symptoms, extreme fatigue, pain in the ears wich came and went. Stabbing pain throughout the body in different places, pain in chest, increased floaters in my eyes, pain and soreness in ribs, pelvic pain and pressure which the urologist couldn't find the cause of. Feels like my bones hurt in my feet, my breats hurt and wasn't during my time of PMS, nausea, dizziness, heart palpitations, now the pain in my legs is quite severe and there is worse swelling behind the knees. the pain goes from my feet all the way to my upper thigh, with twitching also on and off. My memory is not great I keep forgetting what I was going to say, names of things, can't find my words sometimes. It seems like such a crazy list of symptoms, and they are not all at the same time all the time, they are sporatic. (except the legs are pretty constant. But everyday sucks and I am so sick of living like this. The doctors I fave seen have not even mentioned Lyme, but I will be pretty persistent on having them test me for it when I see them tomorrow. I had an MRI on my left knee this past Tuesday and I will see what results they get from that also. Any thoughts are very much appreciated, and can someone tell me what kind of specialist I should see. A Rheumatologist or Neurologist??? Thanks for taking the time to read this. And please excuse my spelling errors, not the greatest typist!!
-------------------- Jerilyn Posts: 5 | From Easton, PA | Registered: Oct 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
WELCOME*)!*! *)!*)!*!*)!!
It COULD definitely be Lyme, or NOT!! You should see all the doctors you can to rule out things- you need a thorough Differential Diagnosis- but you may also want to line up an appointment with an LLMD- a Lyme Literate MD as we call them!!! There is a column like this one here except it is called Seeking Doctors and you would post there with your location & ask!!! There are GREAT doctors in your area!!!
Just fyi a negative Lyme test does not mean you don't have it- and a positive one doesn't mean you do- could just be antibodies still circulating- it is a complicated disease!!!
You sound like you definitely have a disease LIKE Lyme sympomtwise- we here, many of us, have had similar/identical symptoms!!!!!!!! But you need a thorough DD to rule everything else out first!!! I would try to find an LLMD.
Best wishes, Welcome again!*)*!)! Sincerely, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
Just splitting it up for those of us who have trouble reading.
quote:Originally posted by JerilynRW: Hi. I have been having symptoms for a long time now. I would say months. It started off with having pain in my calves, out of nowhere.
Felt like I had just run a marathon. Was getting worse and worse, until finally I ended up going to th ER. At this point I also have swelling behind the knees. They ran a few tests and sent me home.
I saw the doc the day after and he sent me for an ultrasound to rule out blood clots, which was neg. Then I started to get numbness and tingling in the legs and feet. Had me go for an MRI of the brain to check for MS, that was normal.
I have also had an array of other symptoms, extreme fatigue, pain in the ears wich came and went. Stabbing pain throughout the body in different places, pain in chest, increased floaters in my eyes, pain and soreness in ribs, pelvic pain and pressure which the urologist couldn't find the cause of.
Feels like my bones hurt in my feet, my breats hurt and wasn't during my time of PMS, nausea, dizziness, heart palpitations, now the pain in my legs is quite severe and there is worse swelling behind the knees. the pain goes from my feet all the way to my upper thigh, with twitching also on and off.
My memory is not great I keep forgetting what I was going to say, names of things, can't find my words sometimes. It seems like such a crazy list of symptoms, and they are not all at the same time all the time, they are sporatic. (except the legs are pretty constant.
But everyday sucks and I am so sick of living like this. The doctors I fave seen have not even mentioned Lyme, but I will be pretty persistent on having them test me for it when I see them tomorrow.
I had an MRI on my left knee this past Tuesday and I will see what results they get from that also. Any thoughts are very much appreciated, and can someone tell me what kind of specialist I should see.
A Rheumatologist or Neurologist??? Thanks for taking the time to read this. And please excuse my spelling errors, not the greatest typist!!
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
It sounds like Lyme is a possibility, especially with the migrating symptoms.
You need to see an LLMD (Lyme literate MD) for diagnosis.
If they run the lab test and get a negative result, don't let that stop you from seeing an LLMD as the tests are not very accurate, especially if they don't use IGeneX.
You can post under seeking doctors for a doc close to you.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Thank you all for your time in reading my post and replying to it. I will be happy to hear from anyone else who would like to weigh in. Again, I cannot thank you enough. Jerilyn
-------------------- Jerilyn Posts: 5 | From Easton, PA | Registered: Oct 2007
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posted
Know what your going through. I've had some of your symptoms not all. I'm new to this also and if the people I have talked to on here had medical degrees I'd stick with them. Well if things get bad enough srew the med. degree haha. Seriously you NEED to get tested for lyme. Everything I've read and have been told points to the Western Blot to be accurate ask for that test. take care Beth
Posts: 33 | From Clearfield, Pa | Registered: Oct 2007
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posted
Get a lyme western blot done as soon as possible ONLY through Igenex laboratories. Do not bother with ELISA tests at other labs that regular docs will order. Call Igenex and ask them to send you a kit, then bring the form to a doc to sign and send in your blood. Other labs DO NOT test accurately for lyme disease. -Despin
Posts: 163 | From Cleveland, OH | Registered: Sep 2007
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posted
Hi Jerilyn, Welcome to LymeNet. Don't worry about spelling errors. We all make them.
It would be very helpful if you could break up what is written. Some people here have visual problems & their eyes have trouble reading long paragraphs. You'll probably get more responses with spaces.
I don't have a medical background, but from what I've learned through my family's experiences, it sounds very likely that you have Lyme and/or other tick-borne diseases (TBDs).
In 1992, a LLMD told me it's a red flag for LD when more than 3 systems are affected (joints, circulatory, neurological, etc). Also, when symptoms come & go and move around the body.
I agree it's good to rule out possible diagnoses, and you've done a lot of that. I recommend you find a LLMD now. He/she will consider other possible diagnoses, too.
You're in a state that is highly endemic for Lyme and fortunately there are a number of LLMDs there.
Keep reading and learn all you can. I hope you've found the info for "newbies" here (Med Questions) Has info on almost everything about TBDs.
An excellent book that you may find helpful is "Coping with Lyme Disease" "Everything You Need to Know About Lyme Disease" is excellent, too.
posted
I have had these symptoms for about 3 months, at this severity. I have not had a rash.
I went to see my doc today, and believe it or not Lyme was the first thing that came to his mind, fortunately for me.
He is doing bloodwork for Lyme, Lupus, and 2 others that I can't quite remember. But he said it sounds like Lyme to him.
I will see him again next Friday. So we will see what the bloodwork shows. If there are neg. results we will discuss sending the bloodwork out to the above referenced lab.
Thank you all again for your replies.
-------------------- Jerilyn Posts: 5 | From Easton, PA | Registered: Oct 2007
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posted
Thanks for the update. Keep in touch so we'll know the outcome. We care!!
Posts: 4638 | From South Carolina | Registered: Mar 2001
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