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MS and Lymes Disease
Hello everyone, I am new to this site and still learning my way around. I was diagnosed with MS, 5 years ago. My symptoms have included, optic neuritis, temporary vision loss, tingling in extremities, a hot sensation in hands and feet at night while sleeping, occasional dizziness and fatigue. I was positively diagnosed with an MRI. My question is: Has anyone also been tested for Lymes Disease? I have been reading about this, and the symptoms are VERY similar (even lesions on an MRI). I was just wondering if anyone had been misdiagnosed in the past. Thank you for any input, Nicoal
Best Answer
Hi Nicoal,
Glad to here you are staying. This is my second family!! LOL Honestly I wouldn't know what to do without the help of everybody here.
How about, (this is funny), my son was lying down to get his MRI, and as soon as the drumbeat sound started, he started to move his body like he was dancing,, LOL, I was cracking up!
But right after that, he was complaining of a headache again. It is so frustrating.
I just hope its just migraines and nothing else. He worries me because he was such a quiet baby, but started to get hyperactive at 3 yrs. old. I said, Oh man, its not terrible two's, it's terrible 3's. Then the aches and pains, the screaching cry when he doesn't get his way. I mean,.. I could go on and on of how much his disposition has changed.
I have been checking into if my medicare will cover a lyme literate doc. I am still looking for one. I was looking into Dr. Jemsek. He is in Washington, DC. Have you watched the movie, Under Our Skin. Good movie, all about lyme. You can look it up on youtube and watch the trailer.
Dr. Jemsek was in the movie.
Anyway, if you want to chat more, we can pm eachother. I would love to hear your whole story, if you would like to share,
Take Care,
Pam
Glad to here you are staying. This is my second family!! LOL Honestly I wouldn't know what to do without the help of everybody here.
How about, (this is funny), my son was lying down to get his MRI, and as soon as the drumbeat sound started, he started to move his body like he was dancing,, LOL, I was cracking up!
But right after that, he was complaining of a headache again. It is so frustrating.
I just hope its just migraines and nothing else. He worries me because he was such a quiet baby, but started to get hyperactive at 3 yrs. old. I said, Oh man, its not terrible two's, it's terrible 3's. Then the aches and pains, the screaching cry when he doesn't get his way. I mean,.. I could go on and on of how much his disposition has changed.
I have been checking into if my medicare will cover a lyme literate doc. I am still looking for one. I was looking into Dr. Jemsek. He is in Washington, DC. Have you watched the movie, Under Our Skin. Good movie, all about lyme. You can look it up on youtube and watch the trailer.
Dr. Jemsek was in the movie.
Anyway, if you want to chat more, we can pm eachother. I would love to hear your whole story, if you would like to share,
Take Care,
Pam
Thank you Pam:) I do like this site, and I think I will be staying. I'm so sorry that you and your son have to go through this. It's hard enough to have to find a diagnosis for yourself, let alone one for your son too:( I hope everything turns out ok for you both.
I'm a little ticked off that my doctor didn't consider Lymes too. The more and more I read and talk to people, the less I am thinking he is as good as I thought. At least I don't see him anymore after moving to Michigan.
Sending prayers and good karma your way, Nicoal
I'm a little ticked off that my doctor didn't consider Lymes too. The more and more I read and talk to people, the less I am thinking he is as good as I thought. At least I don't see him anymore after moving to Michigan.
Sending prayers and good karma your way, Nicoal
Thank you! :)
This process of a diagnosis takes forever. I have Graves disease also, and was told that Lyme and / or it's coinfections can wreck havoc on the thyroid. ( HMMM ??) During the years of treatment for my thyroid, RAI, Radiation to both eyes due to thyroid eye disease, 5 eye surgeries, I began to have a lot of neurological things happen.
First was the optic neuropathy. I was told that it was from the eye disease.
Second was the slurred speech, that lasted for two weeks. I was told that I had a TIA, at 36yrs old at the time. Went for a second opinion and had an EEG done , came back abnormal and was told I have simple partial seizures.
Then the nystagmus diagnosis along with sinking ground when walking, extreme dizziness and bulge discs in my c5 6 and 7, pain and numbness in left arm down to the fingers. Double vision really bad, I wear a prism in my glasses.
I didn't start to put all of my pieces to the puzzle together until recently. I think back to when i had cat scratch fever and then the "lazy tongue" , my stiff neck, knee joint and hip jjoint pain.
It makes alot of sense since my MRI's have not shown anything. At one point, I would have bet my life on it that I had MS. Anytime I looked up slurred speech for two weeks, it popped up, MS, TIA, TBI, Alsheimers, and something else?? I forgot, but I did the process of elimination and said, it's got to be MS, What else could it be.
Getting a lyme literate doc. is my last bit of hope to get better. If this isn't it, then I have absolutely no clue what the hejees is going on with me.
I just had to go for an MRI this morning on my orbits due to the abnormal VEP, so we'll see. My 8 yr. old son had to get one also because he has been getting these horrifying headaches that make him scream and cry in pain.
I worry more about me having lyme, I think because of my kids. I could have passed it on to them in utero, and that scares me.
Please keep us updated, and I hope you find the answers you need. Oh yeah, and as far as you being so close to different animals and ticks and so forth, I am shocked your doc's didnt look at that first for you.
Hang in there, and stick around, alot of great people here that really know there stuff. :)
Pam
This process of a diagnosis takes forever. I have Graves disease also, and was told that Lyme and / or it's coinfections can wreck havoc on the thyroid. ( HMMM ??) During the years of treatment for my thyroid, RAI, Radiation to both eyes due to thyroid eye disease, 5 eye surgeries, I began to have a lot of neurological things happen.
First was the optic neuropathy. I was told that it was from the eye disease.
Second was the slurred speech, that lasted for two weeks. I was told that I had a TIA, at 36yrs old at the time. Went for a second opinion and had an EEG done , came back abnormal and was told I have simple partial seizures.
Then the nystagmus diagnosis along with sinking ground when walking, extreme dizziness and bulge discs in my c5 6 and 7, pain and numbness in left arm down to the fingers. Double vision really bad, I wear a prism in my glasses.
I didn't start to put all of my pieces to the puzzle together until recently. I think back to when i had cat scratch fever and then the "lazy tongue" , my stiff neck, knee joint and hip jjoint pain.
It makes alot of sense since my MRI's have not shown anything. At one point, I would have bet my life on it that I had MS. Anytime I looked up slurred speech for two weeks, it popped up, MS, TIA, TBI, Alsheimers, and something else?? I forgot, but I did the process of elimination and said, it's got to be MS, What else could it be.
Getting a lyme literate doc. is my last bit of hope to get better. If this isn't it, then I have absolutely no clue what the hejees is going on with me.
I just had to go for an MRI this morning on my orbits due to the abnormal VEP, so we'll see. My 8 yr. old son had to get one also because he has been getting these horrifying headaches that make him scream and cry in pain.
I worry more about me having lyme, I think because of my kids. I could have passed it on to them in utero, and that scares me.
Please keep us updated, and I hope you find the answers you need. Oh yeah, and as far as you being so close to different animals and ticks and so forth, I am shocked your doc's didnt look at that first for you.
Hang in there, and stick around, alot of great people here that really know there stuff. :)
Pam
Thank you for your comment, it was helpful:) I am kind of in the same boat as you. When I was diagnosed years ago, I never even knew that they should also test for Lymes. My primary care doctor did bloodwork, but it was routine for a physical exam.
My neurologist didn't do any bloodwork, but diagnosed me from an MRI and previous symptoms. The one that got them considering MS in the first place was the optic neuritis.
I thought this was normal and how they were supposed to diagnose MS. I thought that once they saw lesions on your brain, it was a sure thing. Now that I have been reading and hearing things about Lymes, my wheels are spinning also:)
Adding to that information, I used to be a veterinary technician and have been scratched and bitten by cats and definitely around ticks, it really does make me think.
So as of now, I am considering looking for a Lymes doctor to get the blood test.
Keep up the good work, hope that you find a diagnosis soon.
Nicoal
My neurologist didn't do any bloodwork, but diagnosed me from an MRI and previous symptoms. The one that got them considering MS in the first place was the optic neuritis.
I thought this was normal and how they were supposed to diagnose MS. I thought that once they saw lesions on your brain, it was a sure thing. Now that I have been reading and hearing things about Lymes, my wheels are spinning also:)
Adding to that information, I used to be a veterinary technician and have been scratched and bitten by cats and definitely around ticks, it really does make me think.
So as of now, I am considering looking for a Lymes doctor to get the blood test.
Keep up the good work, hope that you find a diagnosis soon.
Nicoal
My Lymes test was negative. I have read of false negatives whereby patients had been successfully treated for Lymes after years of thinking they had MS
Hi and welcome. Can you back up and tell us how your diagnosis for MS was made? NEurologists usually need some pretty solid proof before they will give this name to problems.
Perhaps you are like so many of us here, and wondering all the time if the doctor(s) got it wrong or right? I know I am also wondering about my dx.
Yes, people are sometimes misdiagnosed and havetheir dx changed. Have you asked your doctor about Lyme disease? They normally run the blood work to check for Lyme when they are working through a dx.
best.
Lulu
Perhaps you are like so many of us here, and wondering all the time if the doctor(s) got it wrong or right? I know I am also wondering about my dx.
Yes, people are sometimes misdiagnosed and havetheir dx changed. Have you asked your doctor about Lyme disease? They normally run the blood work to check for Lyme when they are working through a dx.
best.
Lulu
Yep, I was tested as most of us were since it's an MS mimic. Mine was negative.
Julie
Julie
Lyme's usually causes joint involvement and other osteoarthritis symptoms not seen in MS. Lyme's is a known MS mimic that needs to be ruled out to meet that "Diagnosis of exclusion" for MS.
Bob
Bob
When I was being considered for MS, they ran a Lyme test on me, as well as testing me for heavy metal poisoning and syphillis. I think they also did a anti-phospho-lipase syndrome test. The lesions are a little different, and you would exhibit flu-like symptoms.
Here's a website with pictures of different kinds of lesions - it's great when you don't know what you're looking at.
http://www.radiologyassistant.nl/en/4556dea65db62
Here's a website with pictures of different kinds of lesions - it's great when you don't know what you're looking at.
http://www.radiologyassistant.nl/en/4556dea65db62
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I have so far experienced alot of the ms symptoms that are also very comparable to lyme. I have read on the lyme forum and have asked some questions there regarding some of the things I have had over the years.
slurred speech, "dead legs" left hand tremor, optic neuropathy, nystagmus, dizziness, noise intoloerance, ear clicking, muscle spasms, twitching, and vibrating, numbness. I have been dx'd with seizure disorder around 3 yrs. ago, never had them before.
My MRI's have been clear, my VEP is abnormal consistent with demyelination, EEG's abnormal, I was tested more than once through the Elisa test and it came back negative. However, when I was 17 yrs. old, I had Cat Scratch Disease (Bartonella) which is a coinfection of Lyme disease. Since I have been asking alot of questions on the lyme forum, my wheels in my brain started to spin. Could it be possible that I actually still have bartonella along with lyme disease and it is not being picked up by certain tests?
I am now going to seek out a Lyme Literate DR. (LLMD) and hope to be tested by IGeneX Lab and to look for other coinfections that are possibly lurking around. I have been told that the Elisa test is not always accurate, especially if the little critters are hiding. (I know sounds gross)
Are you thinking that you might have lyme and Not ms?
I have read and found that alot of people are sometimes misdiagnosed, but in other cases they have both. I am also on the Lyme forum and they are very helpful over there.
This is a great place to be. Take Care.
Pam :)