Aa
New to forum
I just wanted to introduce myself and give you all a thank you...your posts and information have been informative. I have been "lurking" here for a couple of weeks, trying to find some answers.
A little background:
About 4 months ago, my daughter and co-worker started laughing at me after dropping my keys several times, one right after the other. I laughed it off, blew it off and didn't think nothing of it, until it started happening with more frequency. I kept walking into walls too or I would pivot and just about fall over, frequently losing my balance. There has been some brief spells of vertigo. Added to that was this weird cognitive symptom that I had never experienced before. I couldn't remember things, both short-term and long-term. I struggled with finding words, the nominal aphasia was severe and my mouth kept getting tangled up around rather simple words. It was difficult to even do my job which made me really worried. Then my left eye began to twitch. Again, it was easy to write off, we have all experienced an eye twitch at some point or another. Well, this eye twitch kept getting worse and worse and has been happening for close to 3-4 months now. And how about those muscle spasms, charley horses and generalized pain in my calves, thighs, shoulders, arms, hips. My fingers were stiff and painful but were not swollen. Then my neck hurt so bad, I couldn't move it. It felt weak and if it wasn't for my shoulders, I swear my head would have fallen off. It's been that way for 3 weeks now. Exertion makes me so tired, it takes days to recover. Walking for trick-or-treating had me exhausted and sore for days. I made rolls for Thanksgiving and I am exhausted. I also have a history of migraines which are occurring with more frequency. Then the really embarassing symptoms of IBS-type symptoms, urinary incontinence, those just haunt me daily with no improvements.
We are just beginning this journey. Thus far, all the labs came back negative including RA, B12, TSH, anemia, CBC, CMP, blood sugar, sleep apnea, and various others. The MRI report was negative as well.
The current MD was leaning towards MS, tumor, TIAs or something neurological since my symptoms go from top to bottom. Fibromyalgia wasn't even on his radar or mine either until another co-worker mentioned it. Now that everything has come back negative, he's pretty much written things off as psychosomatic, aka "in my head." I've been waiting for him to call me back to see where we go next, but, thus far, he hasn't called, and quite frankly, it's ticking me off.
In 2000, I had a MRI that showed 2 compressed disks. The current MD didn't believe the disks could account for most of the symptoms. 2006, I had a spinal tap that came back positive for WBC/Protein so the MD treated the migraine/fever as viral meningitis but I never did receive a confirmation, only a "probably."
Anyway, I live 2 hours outside of Denver and Colorado Springs and if anyone could recommend open-minded MDs or DOs that can help cut through the runaround, I would appreciate it. My insurance does not require a referral but I have to be careful...the idea of a whole bunch of medical debt scares the daylights out of me but I do need answers before I start to think I am crazy.
A little background:
About 4 months ago, my daughter and co-worker started laughing at me after dropping my keys several times, one right after the other. I laughed it off, blew it off and didn't think nothing of it, until it started happening with more frequency. I kept walking into walls too or I would pivot and just about fall over, frequently losing my balance. There has been some brief spells of vertigo. Added to that was this weird cognitive symptom that I had never experienced before. I couldn't remember things, both short-term and long-term. I struggled with finding words, the nominal aphasia was severe and my mouth kept getting tangled up around rather simple words. It was difficult to even do my job which made me really worried. Then my left eye began to twitch. Again, it was easy to write off, we have all experienced an eye twitch at some point or another. Well, this eye twitch kept getting worse and worse and has been happening for close to 3-4 months now. And how about those muscle spasms, charley horses and generalized pain in my calves, thighs, shoulders, arms, hips. My fingers were stiff and painful but were not swollen. Then my neck hurt so bad, I couldn't move it. It felt weak and if it wasn't for my shoulders, I swear my head would have fallen off. It's been that way for 3 weeks now. Exertion makes me so tired, it takes days to recover. Walking for trick-or-treating had me exhausted and sore for days. I made rolls for Thanksgiving and I am exhausted. I also have a history of migraines which are occurring with more frequency. Then the really embarassing symptoms of IBS-type symptoms, urinary incontinence, those just haunt me daily with no improvements.
We are just beginning this journey. Thus far, all the labs came back negative including RA, B12, TSH, anemia, CBC, CMP, blood sugar, sleep apnea, and various others. The MRI report was negative as well.
The current MD was leaning towards MS, tumor, TIAs or something neurological since my symptoms go from top to bottom. Fibromyalgia wasn't even on his radar or mine either until another co-worker mentioned it. Now that everything has come back negative, he's pretty much written things off as psychosomatic, aka "in my head." I've been waiting for him to call me back to see where we go next, but, thus far, he hasn't called, and quite frankly, it's ticking me off.
In 2000, I had a MRI that showed 2 compressed disks. The current MD didn't believe the disks could account for most of the symptoms. 2006, I had a spinal tap that came back positive for WBC/Protein so the MD treated the migraine/fever as viral meningitis but I never did receive a confirmation, only a "probably."
Anyway, I live 2 hours outside of Denver and Colorado Springs and if anyone could recommend open-minded MDs or DOs that can help cut through the runaround, I would appreciate it. My insurance does not require a referral but I have to be careful...the idea of a whole bunch of medical debt scares the daylights out of me but I do need answers before I start to think I am crazy.
Hi there...I just saw your response. I sense a great deal of frustration in your post and I can relate. I wish I could add some information or help in some way but I am a newbie to this whole thing myself. I have a lot of confounding symptoms and absolutely no clear answers and am in search of a new MD because mine's useless and narrow-minded.
I really hope that your diagnostic picture becomes clear and you get some answers soon. This living in limboland is frustrating.
Does anyone know about Meningitis and Fibro or MS?
I really hope that your diagnostic picture becomes clear and you get some answers soon. This living in limboland is frustrating.
Does anyone know about Meningitis and Fibro or MS?
I'm sorry to hear you are having these issues. The good new is that every test has come back negative, outside of the EBV being elevated. You have taken every step possible to insure it isn't MS.
EBV is more common than some may realize. Studies suggest that most everyone will be exposed to this at some time in their lives, but not everyone will develop mono symptoms. The research done regarding EBV's relation to MS lean more towards those who have had chronic relapses. Even then, there is nothing concrete to say that if one were to have EBV it automatically means they will progress to MS. They don't know what causes MS, but there are lots of theories.
EBV itself has no neurological symptoms like you describe, but many who now have CFS/ME did have the virus beforehand, leading many to feel the virus may have set this off. The symptoms you describe really sound more like those of fibro (the numbness, pins and needles sensations). Numbness, TMJ, dizziness...those are fibro type symptoms.
I'm not aware of any further testing that could be done outside of those you have already had. It's a true blessing that nothing showed up to indicate MS. Sometimes the internet can really be helpful when trying to gain answers; other times it can overwhelm one with all of the possibilities. For today, you know you do not have MS. There are medications that can help with the pain and paresthesias you are having.
I wish you the best and hope you can find something that will help you to feel better soon.
EBV is more common than some may realize. Studies suggest that most everyone will be exposed to this at some time in their lives, but not everyone will develop mono symptoms. The research done regarding EBV's relation to MS lean more towards those who have had chronic relapses. Even then, there is nothing concrete to say that if one were to have EBV it automatically means they will progress to MS. They don't know what causes MS, but there are lots of theories.
EBV itself has no neurological symptoms like you describe, but many who now have CFS/ME did have the virus beforehand, leading many to feel the virus may have set this off. The symptoms you describe really sound more like those of fibro (the numbness, pins and needles sensations). Numbness, TMJ, dizziness...those are fibro type symptoms.
I'm not aware of any further testing that could be done outside of those you have already had. It's a true blessing that nothing showed up to indicate MS. Sometimes the internet can really be helpful when trying to gain answers; other times it can overwhelm one with all of the possibilities. For today, you know you do not have MS. There are medications that can help with the pain and paresthesias you are having.
I wish you the best and hope you can find something that will help you to feel better soon.
Hello Terik,
I started having some strange neurological symptoms after getting a viral infection in July of this year. It started off as being just fatigue and what I thought to be a rapid heartbeat. I was worked up by cardiology and the workup was negative. I then went to the ER the weekend of Labor Day with migratory aches and pains in my ankles and wrists. I was referred to an ENT, who ordered an MRI. The MRI was negative. I then went to a neurologist, who ordered another brain MRI w/contrast along with MRI of the cervical spine, which was also negative. I had a VNG for the dizziness and it came up insignificant. I went to neurologist #2 after starting to have parasthesia on the left side on 09-19-08. The neurologist ordered evoked potentials and spinal tap. Spinal tap showed elevated myelin basic protein but no oligoclonal bands(significant for MS). I have also had a bone scan, which was negative. Since then, I have had migratory pins and needles throughout my body, pain in calves and just generally all over, numbness in hands when I wake up in the morning, tinnitus, jaw pain, and ear pain. I was told that all 3 Epstein Barr titers came back elevated. The physician has not chosen to treat this with anything other than an herb. I continue to have symptoms and scared of this EBV turning into MS, given the reports on the internet about the connection between EBV and MS. I hav no flu like symptoms, only neurological symptoms. Any insight would be great!
I started having some strange neurological symptoms after getting a viral infection in July of this year. It started off as being just fatigue and what I thought to be a rapid heartbeat. I was worked up by cardiology and the workup was negative. I then went to the ER the weekend of Labor Day with migratory aches and pains in my ankles and wrists. I was referred to an ENT, who ordered an MRI. The MRI was negative. I then went to a neurologist, who ordered another brain MRI w/contrast along with MRI of the cervical spine, which was also negative. I had a VNG for the dizziness and it came up insignificant. I went to neurologist #2 after starting to have parasthesia on the left side on 09-19-08. The neurologist ordered evoked potentials and spinal tap. Spinal tap showed elevated myelin basic protein but no oligoclonal bands(significant for MS). I have also had a bone scan, which was negative. Since then, I have had migratory pins and needles throughout my body, pain in calves and just generally all over, numbness in hands when I wake up in the morning, tinnitus, jaw pain, and ear pain. I was told that all 3 Epstein Barr titers came back elevated. The physician has not chosen to treat this with anything other than an herb. I continue to have symptoms and scared of this EBV turning into MS, given the reports on the internet about the connection between EBV and MS. I hav no flu like symptoms, only neurological symptoms. Any insight would be great!
You are quite welcome. Glad I could be of some help to you. It's frustrating, to say the least, when one is dealing with an illness and they don't really know what it is. You want some answers and I pray you get them. I'm glad you are getting that second opinion. Wonderful idea. Please keep in touch and let us know how you are doing.
Have a nice Thanksgiving.
Have a nice Thanksgiving.
Thanks for the info. I REALLY appreciate the link. There's so many cruddy MDs out there and it would be my luck that I would find the worst...as evidenced by my luck picking thus far. I also scheduled an appointment for a second opinion with a traveling neurologist that our hospital contracts with. That appointment is right after the appointment with the opthamologist. Got some goofy eye things happening. Managed to acquire all the labs/MRI results and will see what happens...December 8th sure seems far away.
I would move on from the doctor you are currently seeing. He doesn't sound as if he is concerned about your symptoms, now that the tests have come back negative. Be thankful that nothing show up on them and you can being to get treatment for what is going with your body. It is NOT all in your head. Well it is (CNS wise), but not because it's psychosomatic.
http://www.healthgrades.com/local-doctors-directory/by-specialty/rheumatology/colorado-co/denver-rheumatologists
Here is an address of rheumatologists in the Denver area. You can visit their website and also see their ratings from those who have used them. If after seeing a rehumatologist, it is not felt that your symptoms are due to fibro, they will be able to direct you to a neurologist to investigate it further. I can say, from my experience, that all of the symptoms you have listed are those that come from having fibromyalgia or chronic fatigue syndrome.
Hope this will help you find some answers and I wish you the best of luck (and pain free days).
Take care and keep in touch.
http://www.healthgrades.com/local-doctors-directory/by-specialty/rheumatology/colorado-co/denver-rheumatologists
Here is an address of rheumatologists in the Denver area. You can visit their website and also see their ratings from those who have used them. If after seeing a rehumatologist, it is not felt that your symptoms are due to fibro, they will be able to direct you to a neurologist to investigate it further. I can say, from my experience, that all of the symptoms you have listed are those that come from having fibromyalgia or chronic fatigue syndrome.
Hope this will help you find some answers and I wish you the best of luck (and pain free days).
Take care and keep in touch.
Funny you should mention the cognitive struggles and the dropping/bumping into things. I've been having issues with those myself. In fact, the "fly away hips" (as I so lovingly refer to them as I bump into the walls, doorways, and my kids - nearly knocking them over) have been an issue for over a year and it wasn't until reading your post that I even thought to bunch it into the rest of my symptom's list.
I don't live in Colorado so I can't help you with finding a doctor but I do agree with Lucky that a referral to a Rheumatologist AND a Neurologist may help you find some more answers. So sorry you're suffering from all this, I feel your pain - literally. **hugs**
I don't live in Colorado so I can't help you with finding a doctor but I do agree with Lucky that a referral to a Rheumatologist AND a Neurologist may help you find some more answers. So sorry you're suffering from all this, I feel your pain - literally. **hugs**
I can't help you with the doc part, but I think you should ask your doc to be sent to a Rheumatologist or Nerologist. I went to see my doc did all the tests & he said well nothing is showing up so it must be a thing called Fibromyalgia. Then he asked if I wanted to see a specialist, I said yes if he can help me get rid of this pain. Well this was last Dec., I went to the rheumy & he said I have 18 of the 18 trigger points & then I had to start getting trigger point injections. They never helped so I started getting nerve block injections which haven't helped either. So I don't know what is next. This flare started in Oct. 07 & hasn't let up, the doc put me off of work in Feb.08 as I just couldn't keep on going the way I was.
Anyway I suggest you tell your doc that you want to see a specialist that will help diagnose what is wrong with you.
Hope all goes well.
Anyway I suggest you tell your doc that you want to see a specialist that will help diagnose what is wrong with you.
Hope all goes well.
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