monalisa95
01-15-2008, 04:51 PM
I am new to this board and just searching for answers. I have been on my quest for over 5 years now. My symptoms began after the birth of my 3rd child. I have gone from extreme fatigue to muscle aches, sleep terrors, balance problems, muscle twitches, vision problems (cataracts at age 37), memory problems and more. During the first round of tests 5 years ago, a neuro told me that I presented with MS, but the MRI and nerve conduction tests were neg. He referred me to a rheum who told me I was just a busy mother of 3. He gave me provigil to stay awake during the day. I went to a second rheum who spent a lot of time with me. She ran a full immune panel and found nothing except a high ANA level and one reactive Lyme band. She told me to come back when my symptoms got worse.
I went for a few years without medical intervention. I figured I was just crazy. When my sleep terrors got worse, I went to another neuro. He did not think I had MS, though he did not do another MRI. He did a sleep study and dx'd me with fibro. He put me on Cymbalta and Lyrica for pain and sleep. This was a year ago. The Lyrica has caused a 15 lb weight gain which has made me miserable and I would love to get off the meds. I'm trying to find a new doc now.
One symptom that I have had throughout is what I call my bacon sizzle. Its at the base of my skull. No one has been able to tell me what it is. When I describe it, they look at me like I'm nuts. It sounds like a pan of bacon cooking or like an electrical shock sound. I wish I knew what it was. I've also been having a lot of headaches and neck pain, but just chalk it up to meds.
Any insight? I don't know what to do next.
thanks.:confused:
I went for a few years without medical intervention. I figured I was just crazy. When my sleep terrors got worse, I went to another neuro. He did not think I had MS, though he did not do another MRI. He did a sleep study and dx'd me with fibro. He put me on Cymbalta and Lyrica for pain and sleep. This was a year ago. The Lyrica has caused a 15 lb weight gain which has made me miserable and I would love to get off the meds. I'm trying to find a new doc now.
One symptom that I have had throughout is what I call my bacon sizzle. Its at the base of my skull. No one has been able to tell me what it is. When I describe it, they look at me like I'm nuts. It sounds like a pan of bacon cooking or like an electrical shock sound. I wish I knew what it was. I've also been having a lot of headaches and neck pain, but just chalk it up to meds.
Any insight? I don't know what to do next.
thanks.:confused:
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Bearygood
01-15-2008, 05:15 PM
Hi, monalisa. MS aside, I know what you mean about the "bacon sizzle" -- or maybe I do. There is a thing in MS called "L'Hermitte's" that's kind of like an electrical shock and is generally associated with a lesion in the c-spine. When I was first dxed with MS, I explained the sensation to my specialist and we both thought I was talking about L'Hermitte's. However, that's really NOT what it feels like to me when it happens and my c-spine is clear. (I have lesions on my brain and one on my t-spine but not on the c-spine.) It's really not an electrical shock that I get and although I can kind of feel it, it's more like I'm hearing and experiencing the sound of it (bacon sizzle!). It happens behind my head at the base of my skull but it's not constant -- mine does not happen frequently. IF that's what you're experiencing, there's no name/explanation for it that I've found yet! Let me know if that's what you're talking about and in the meantime, look up L'Hermitte's and see if that's more like what you have. If it fits that description, you may have a lesion on your cervical spine (c-spine).
Above and beyond that, it sounds like it's time for a visit to the neuro and a new set of MRIs if the examination warrants it. Perhaps a new neuro might be better? The goal would be to have MRIs done of your brain and c-spine, with AND without contrast. As part of any diagnostic process, you should also have a complete blood work-up so that things can be excluded (B12 deficiency, Lyme's, etc.).
Let me know if what you're experiencing in your skull sounds like L'Hermittes or if we both have "sizzling head" disease! (For which there is so far for me, no explanation!) ;)
Above and beyond that, it sounds like it's time for a visit to the neuro and a new set of MRIs if the examination warrants it. Perhaps a new neuro might be better? The goal would be to have MRIs done of your brain and c-spine, with AND without contrast. As part of any diagnostic process, you should also have a complete blood work-up so that things can be excluded (B12 deficiency, Lyme's, etc.).
Let me know if what you're experiencing in your skull sounds like L'Hermittes or if we both have "sizzling head" disease! (For which there is so far for me, no explanation!) ;)
Bearygood
01-15-2008, 05:19 PM
Just wanted to add that L'Hermitte's is not unique to MS -- happens in other neurological conditions, or at least in Lyme's.
monalisa95
01-15-2008, 05:21 PM
thanks for the message. will look that up. forgot to add that i get these random jerks in my arms and legs. very weird. my neuro tested b12 and a thyroid. all neg.
Bearygood
01-15-2008, 05:23 PM
Yes, please do let me know if it's more like L'Hermitte's or we're just mysterious bacon sizzlers together. ;)
monalisa95
01-15-2008, 05:28 PM
i think mine is more like the bacon sizzle. i don't get it thru the rest of my body, just at the base of my skull. it's usually when i am laying down and move my head. my mom has had lyme for over 10 years. i fear that is me. symptoms just seem to be getting worse and neuro just keeps saying "fibro".
Bearygood
01-15-2008, 05:34 PM
And it doesn't feel like the "shock" described in L'Hermitte's?
Well, we may have to remain a mystery then, unless one day that "bacon sizzle" is coined as a sx of something! Well, nice to know I'm not alone. :) Honest, I've had this on and off for years and never thought anything much of it until I was dxed with MS but even now, nothing quite explains it! Weird, huh? (I used to actually be slightly amused by it, LOL!)
Okay, but as for your other sx, time to go to a neuro who will listen. Look at BlessedforLife's and Cindy's posts for inspiration. Sometimes you have to keep pushing to get someone to listen!!!
You need an exam and ideally, a new set of MRIs (brain and hopefully c-spine, with and without contrast). Get tested for Lyme's again and make sure they send the blood to IGeneX. If you suspect Lyme's at all, the people on the Lyme board know a lot about testing and bands, especially a woman who goes by the name ticker.
Good luck and please keep us posted! Do NOT give up!!!!! :)
Well, we may have to remain a mystery then, unless one day that "bacon sizzle" is coined as a sx of something! Well, nice to know I'm not alone. :) Honest, I've had this on and off for years and never thought anything much of it until I was dxed with MS but even now, nothing quite explains it! Weird, huh? (I used to actually be slightly amused by it, LOL!)
Okay, but as for your other sx, time to go to a neuro who will listen. Look at BlessedforLife's and Cindy's posts for inspiration. Sometimes you have to keep pushing to get someone to listen!!!
You need an exam and ideally, a new set of MRIs (brain and hopefully c-spine, with and without contrast). Get tested for Lyme's again and make sure they send the blood to IGeneX. If you suspect Lyme's at all, the people on the Lyme board know a lot about testing and bands, especially a woman who goes by the name ticker.
Good luck and please keep us posted! Do NOT give up!!!!! :)
monalisa95
01-15-2008, 05:39 PM
my neuro would not sign igenex forms. i'm going to go back and ask for new mri's, especially since i've had eye pain. he gives me shots in my head to take that pain away. that just can't be normal.....thanks for listening.