I'm now 32. My first experience with Lhermittes symptoms happened at 25 after my first born. Went away after a few weeks. At the age of 27, 5 months after my second child was born, started with tingling in my left index finger by the end of the day it was the whole left side of my body. The next couple of days it progressed to complete weakness on my left side and numbing with tingles from the back of my head down except my face, but only on the left side of my body. Saw a neurologist he admitted me to the hospital, performed a spinal tap - unconclusive, and an MRI showing 4 lesions on the brain and one on the neck. Diagnosis - MS. Worsened and progress to paralasis. Saw an MS Specialist who suggested Cytoxan (Chemo). Was risky but sucessful in the progression of "MS". I regained my mobility and became fully functional again. Went on serveral medicines to allevates painful symptoms and annoying fatigue and Betaseron injections for the last 5 years. Just this past July I started with extreme pain in my joints, shoulders, feet (felt achy like the tops were broken),my knees. Started to feel quite aged. Sounded suspicious to my present MS doctor as not lining up quite with MS. So He tested me for LYME. Guess what after initially being told the Western Blot test was negative. He then contacted me and told me there one band "only one! certainly not enought for a diagnosis but lets retest." Sure enough it came back negative but the same band still showing. I then went to a Lyme specialist the following week who did alot of blood work which was sent out to 2 different labs, twice . Each test came back showing more bands for Lyme. Some bands the same on each test. Some even more on the other. Some bands reflected equivical. This doctor doesn't give up. He says I don't have MS. He is 100% sure it is Lyme, which imitates so many other disease. I've been on antibiotics (Ceftin) for 6 weeks. What an unbelievable difference in my quality of life lately. But in reading about Lyme, I've had it for so long it's reached a very late stage being untreated for so long. So I'm stuck experiencing alot of arthritis pain thats been pretty relentless since its onset 3 months ago. I'm glad for the new diagnosis. At least my body is being treated for the right problem. Hopefully we'll work on the remant problems. Lyme is extrememly difficult to detect. From all my new research I've come up with amazing information. Unfortunately my doctor says its epedemic and the public has no idea how bad. Not only dear tick but mosquitoe bourne and because it is a bacteria he compares it to syphillis, so it can also be sexually transmitted. This bacteria can also pass through to a fetus and through breast milk in the mother to a child. So you are seeing alot of cases were whole families are being diagnosed and treated. We are in the process. My 7 year old was just tested and one band tested positive on his IgG test. It's rather scary. The CDC looks at that test and says it's completely negative but my case itself proves differently. If you are questioning any of you diagnosis and not to sure what you are dealing with. Become your own advocate and voice what you know and have heard. Good Luck.
I WAS TOLD TAT I HAD CEREBELLAR DEGENERATIO,I Hve been to so many dr.now they are sending me to a movement disorder dr.i am having trouble with my vision,stomach,back painin the lower part,shaking is getting worse ,and more.two years ago i was told that i had multiple system astrophy.now they came up with this.one of my question is,is there any way that they can do something so they can figure outwhat is going on.i have problems with my heart plus they told me that i have a small spot on my lungs,does any of this have any thing to do with this disease.i want to ask the dr.instead of keep doing all of these test why not just put me in the hoiptal and do wat every ya have to do.i am just so tired of going to dr. after dr.plus i don,t even know what this is.i feel like that they just keeping everything from me.and i don,t know what to expect.when i start haing other problems they just put me on more medicine.i am on 20 pills a day.and if i take them all the way that i should then it causing other problems.and so i dnon,t know whatt to do.please if ya can get back with me i have try for so long to see what i should do.plus i have even try to see if there was anyone here where i line that has this so that i can at least talk to someone that is going threw what i am.i have even try to find a r.that does reasearch on things like this but my dr just keeps saying we will se.well of course i feel like since i am 49 that they just don,t want to waste there time,or money on someone like me.and then they wnder why i get depres all the time.i can,t talk to my family about this because i don,t want them to worry or anything..please if you can get back with me at least one way or the other....email is ***@**** or you can call me at 1-904-534-2882 thank you
Hi There:
Just a quick comment re: L'hermittes. I have L'hermittes sign and MS. It feels almost like a microwave when you put you head down with electric shock like sensations. Sometimes they run down your spine, sometimes down my arm. My MS was picked up on MRI's done with the contrast dye with demyelination in my brain area.
Hope this helps and good luck to you in your search for what's wrong.
Take care
Thank you for your answer and for this service!!!
Lhermitte's sign is an electric shock like sensation down the spine when a patient bends their neck down and forwards. Your symptoms don't sound typical of Lhermitte's. However, if you're having significant neck problems with new onset bladder changes and weakness in the arms, consider an MRI of the cervical spine and formal neurological exam. It could be degenerative disc disease. MS is also a possibility depending on the clinical exam and history. Good luck.