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In early 2001 I began hearing my pulse so strongly that it would wake me from my sleep, and my muscles and joints hurt constantly (age 39). I saw a dr. who suspected arthritis and ran an ANA test. I had a positive titer of 1:160, but even saw a rheumatologist who found nothing definite. I had occasional numbness and tingling in hands, and in one instance woke to find my left hand and forearm covered in little petechial spots. They were gone in a couple of days. Over the next couple of years I took Vioxx, Celebrex, and Neurontin for pain. I had several sinus infections a year, and frequent headache. By 2004 I often had a burning sensation in my head, face, and/or nose. Before my menstrual cycle I began experiencing sciatica, which continues to this day.
What brings me to your forum is this:
I woke on 2/1/07 to find that my middle finger, lt hand, was numb, which lasted all day. The following morning I found that the same hand was covered in petechial spots (again). I saw my physician who could not determine a cause, I thought it might be related to severe pain and numbness in my right foot, but that turned out to be a Morton's Neuroma. He gave me a steroid injection for the foot. I also complained of severe neck and shoulder pain, I saw a Chiropractor 2 weeks later and that helped the neck & shoulders. In April I began to think that my right contact lens was dirty and began changing it frequently. I finally saw my Opthalmologist in June for what now feels like a spot in my vision, but she saw no nerve problem or anything else. Mid-April I was hit by vertigo while sitting at a traffic light. Had to pull into a parking lot for 10-15 minutes to feel better. It came and went for weeks, until I had eventually learned to move my head differently for fear of it happening again. I still have occasional dizziness (which had never been a problem before). In May I kept getting a feeling in my ears as if they were "wet", and they occasionally felt like they were full of fluid. On 5/11/07 I saw my dr again for a 2nd steroid injection because my foot was hurting again, and mentioned the vertigo to him. He said that women my age (now 45) sometimes develop Menierre's ?) disease, and it could be that. A couple of weeks later my right calf began to throb, then the left. Now they do so constantly, and often feel like someone has a hand around them gently. By June I realized that something wasn't right, because all I could think of was sleep. I often took naps after work, and began needing 10+ hours of sleep as opposed to the 7 I normally need. I didn't want to clean the house, do errands, or even bathe. It all seemed too hard to even think about, much less do. I saw a FNP on 6/5 for the problem, who prescribed Cymbalta. It seems to have helped, although I still have lingering feelings of exhaustion. On 6/29 I saw the FNP again, this time for a headache that had awakened me at 4:00 a.m., and had stayed with me all day. My face and ears also hurt. She said that my ears looked clear, but gave me an antibiotic just in case. All week I continued to feel pain and a burning sensation in my head, with constant eye/ear pain (rt ear).
Went back a week later, because "earache/sinusitis" hadn't gone away. She gave me a second antibiotic (Z-pack).
The following Saturday morning (7/14), vertigo woke me up.
I thought the antibiotic still didn't knock my infection out because I felt rotten, and I was planning to see the FNP again almost two weeks later, when I experienced a stabbing pain in the back of my tongue and throat on my right side. The next morning (7/20) when I woke with another bad headache and stabbing ear/eye pain on my right side, I thought it might have something to do with the throat & tongue experience, so I went to my GP. He diagnosed Glossopharyngeal Neuralgia and put me on Lyrica, 50 mg, 3xdaily. I told him a week later that it seems to help, and I told him at that time that it had even made my eye quit hurting and twitching (had been twitching constantly for over 2 weeks). He said to continue medicine for one month, see how I'm doing, and ween me off it asap. I asked for a neuro consult, as my dad and maternal grandmother both died of anurysms, and there have been a number of brain tumors in the family (more distant relatives). I will see a neurologist this coming Wednesday. Do you have any ideas or suggestions?
Thank you in advance for any light you can shed on my weird experiences.
Smcneel
In early 2001 I began hearing my pulse so strongly that it would wake me from my sleep, and my muscles and joints hurt constantly (age 39). I saw a dr. who suspected arthritis and ran an ANA test. I had a positive titer of 1:160, but even saw a rheumatologist who found nothing definite. I had occasional numbness and tingling in hands, and in one instance woke to find my left hand and forearm covered in little petechial spots. They were gone in a couple of days. Over the next couple of years I took Vioxx, Celebrex, and Neurontin for pain. I had several sinus infections a year, and frequent headache. By 2004 I often had a burning sensation in my head, face, and/or nose. Before my menstrual cycle I began experiencing sciatica, which continues to this day.
What brings me to your forum is this:
I woke on 2/1/07 to find that my middle finger, lt hand, was numb, which lasted all day. The following morning I found that the same hand was covered in petechial spots (again). I saw my physician who could not determine a cause, I thought it might be related to severe pain and numbness in my right foot, but that turned out to be a Morton's Neuroma. He gave me a steroid injection for the foot. I also complained of severe neck and shoulder pain, I saw a Chiropractor 2 weeks later and that helped the neck & shoulders. In April I began to think that my right contact lens was dirty and began changing it frequently. I finally saw my Opthalmologist in June for what now feels like a spot in my vision, but she saw no nerve problem or anything else. Mid-April I was hit by vertigo while sitting at a traffic light. Had to pull into a parking lot for 10-15 minutes to feel better. It came and went for weeks, until I had eventually learned to move my head differently for fear of it happening again. I still have occasional dizziness (which had never been a problem before). In May I kept getting a feeling in my ears as if they were "wet", and they occasionally felt like they were full of fluid. On 5/11/07 I saw my dr again for a 2nd steroid injection because my foot was hurting again, and mentioned the vertigo to him. He said that women my age (now 45) sometimes develop Menierre's ?) disease, and it could be that. A couple of weeks later my right calf began to throb, then the left. Now they do so constantly, and often feel like someone has a hand around them gently. By June I realized that something wasn't right, because all I could think of was sleep. I often took naps after work, and began needing 10+ hours of sleep as opposed to the 7 I normally need. I didn't want to clean the house, do errands, or even bathe. It all seemed too hard to even think about, much less do. I saw a FNP on 6/5 for the problem, who prescribed Cymbalta. It seems to have helped, although I still have lingering feelings of exhaustion. On 6/29 I saw the FNP again, this time for a headache that had awakened me at 4:00 a.m., and had stayed with me all day. My face and ears also hurt. She said that my ears looked clear, but gave me an antibiotic just in case. All week I continued to feel pain and a burning sensation in my head, with constant eye/ear pain (rt ear).
Went back a week later, because "earache/sinusitis" hadn't gone away. She gave me a second antibiotic (Z-pack).
The following Saturday morning (7/14), vertigo woke me up.
I thought the antibiotic still didn't knock my infection out because I felt rotten, and I was planning to see the FNP again almost two weeks later, when I experienced a stabbing pain in the back of my tongue and throat on my right side. The next morning (7/20) when I woke with another bad headache and stabbing ear/eye pain on my right side, I thought it might have something to do with the throat & tongue experience, so I went to my GP. He diagnosed Glossopharyngeal Neuralgia and put me on Lyrica, 50 mg, 3xdaily. I told him a week later that it seems to help, and I told him at that time that it had even made my eye quit hurting and twitching (had been twitching constantly for over 2 weeks). He said to continue medicine for one month, see how I'm doing, and ween me off it asap. I asked for a neuro consult, as my dad and maternal grandmother both died of anurysms, and there have been a number of brain tumors in the family (more distant relatives). I will see a neurologist this coming Wednesday. Do you have any ideas or suggestions?
Thank you in advance for any light you can shed on my weird experiences.
Smcneel
My right ear felt full for awhile too, but the Lyrica even helped that. I knew nothing (didn't know they existed) about the 8th & 9th cranial nerves either, until mine struck out at me! My doctor thought the tinnitus was common also, and said that sometimes, "women of a certain age" develop Menierre's Disease, and it could be that. Well, I hope you learn something from your CT. Being "normal" when you know something is off gets frustrating...my mom has the theory that the doctor's that study those of us that are bewildering cases should pay US for the privilege of the additional education. I'm with her! Take care. :)
I haven't been Dx'd yet. Still looking for answers.
Actually, I don't know anything about the 8th and 9th nerves, so I've learned something new today ~ thanks!
My NCS/EMG was "normal", thus didn't indicate any peripheral neuropathy. However, my neuro did say that in spite of the normal results, I do have ulnar nerve entrapment.
My right ear feels "full". I haven't had a stabbing pain. I've had an abnormal Caloric test (VNG) for my right ear. My neuro, 2 PCPs and a ENT Physician's Assistant didn't do anything about the pulsatile tinnitus (the PA said it was "common").
Hopefully, I'll get some answers from the TB CT, but if it's like most of my tests, it'll be "normal" as well and no answers!
Actually, I don't know anything about the 8th and 9th nerves, so I've learned something new today ~ thanks!
My NCS/EMG was "normal", thus didn't indicate any peripheral neuropathy. However, my neuro did say that in spite of the normal results, I do have ulnar nerve entrapment.
My right ear feels "full". I haven't had a stabbing pain. I've had an abnormal Caloric test (VNG) for my right ear. My neuro, 2 PCPs and a ENT Physician's Assistant didn't do anything about the pulsatile tinnitus (the PA said it was "common").
Hopefully, I'll get some answers from the TB CT, but if it's like most of my tests, it'll be "normal" as well and no answers!
The 8th cranial nerve, I'm sure you know, causes the problems you mentioned. The 9th cranial nerve affects your tongue (posterier 1/3 only), back of the throat, ear, and tonsils, and can cause a stabbing pain in any/all if it is compressed. The pain is called Glossopharyngeal Neuralgia. Like I said earlier, I just kept thinking I had an ear infection, but once they gave me something for the nerve pain, the earache went away (just in time, because I was losing my mind from the constant pain!) You're lucky that your ENT is sending you for further tests, my GP just told me my vertigo is annoying (no s###! - he should be on my end of the vertigo), but says it is nothing to worry about. Have you been dx'd with MS? Either way, what did your NCS/EMG tell you? I hope your CT helps, tinnitus will drive you nuts.
A NCS/EMG tests to see if there are any abnormalities with the peripheral nervous system (outside the CNS). If those are abnormal, it suggests non-CNS causes for your numbness and tingling.
My neuro did NCS/EMG right after my c-spine and brain MRIs.
That's interesting about the 8th and 9th cranial nerves. I have pulsatile tinnitus and dizziness (not vertigo). I'll have to research that a bit. My ENT is sending me for a Temporal Bone CT to determine a cause for the tinnitus.
Please keep us updated on how your NCS testing goes!
Take care! Pat :)
My neuro did NCS/EMG right after my c-spine and brain MRIs.
That's interesting about the 8th and 9th cranial nerves. I have pulsatile tinnitus and dizziness (not vertigo). I'll have to research that a bit. My ENT is sending me for a Temporal Bone CT to determine a cause for the tinnitus.
Please keep us updated on how your NCS testing goes!
Take care! Pat :)
I had the MRI and xray to see if my hyoidal bone is too long, and perhaps pressing on the 8th or 9th cranial nerves, causing the tinnitus and vertigo. He said (by phone) that both are negative, and had his assistant ask me if my feet are still numb and tingling (they are). Because they are, he wants to do a nerve conduction study in two weeks. Does anybody know why? I have asked for copies of my medical records, just in case I ever need them, but haven't picked them up yet today.
Good idea to try and make an apointment as soon as can. They can make you wait a long time in between. Good to get the jump on it , if you can. I'm glad you aren't claustraphobic. I wish I wasn't. Would make lying still for an hour easier. Oh well, we all have to have something wrong huh. That's the way life goes. Karina
Lyrica is a drug that has been out about a year (according to my dr) for diabetic neuropathy or pain from shingles (I don't have either disorder, just pain). It works pretty well with most nerve pain, again according to my dr. Last week, in spite of the Lyrica, I experienced a strange sensation like ants stinging me in the tops of my feet and up my legs. Then, over the weekend I experienced numbness in my cheek, just below my right eye, which is also new for me, so I'm hoping to find something out soon.
I have had an MRI before, but thank you for the info, which I'm sure will help others. I can't remember whether it was with contrast or not (memory) so I'm thinking it wasn't. I spoke to my neuro's office, and it is being done both ways tomorrow morning. Luckily I'm not claustrophobic!
My neuro had told me to come back in about 3 weeks (from last Wednesday), but I think I'll go ahead and start trying to make an appointment, so I can get answers as soon as possible. If he doesn't have any, maybe he can refer me to a good Shrink!
I have had an MRI before, but thank you for the info, which I'm sure will help others. I can't remember whether it was with contrast or not (memory) so I'm thinking it wasn't. I spoke to my neuro's office, and it is being done both ways tomorrow morning. Luckily I'm not claustrophobic!
My neuro had told me to come back in about 3 weeks (from last Wednesday), but I think I'll go ahead and start trying to make an appointment, so I can get answers as soon as possible. If he doesn't have any, maybe he can refer me to a good Shrink!
When you have an MRI they generally order it with contrast. Shouldn't cost more. It's given toward end of it. Like last 5 mins or so. It highlights lesions. I only had it done on second MRI. My first one was to see why I was having double vision and why my eyes didn't track right. You can always ask them for a contrast just to be safe. They normally tell you about it, before they inject you with it.
Have you had an MRI done before? So many things to read on here, hard to get it straight sometimes. If you haven't it takes about an hour. You have to lie still on a table. They put you in a tube. Top is very close to your face, so if claustrophobic let them know. I am, was hard. I sang to myself during 2nd one. You can also get a pill to take before test, just ask your dr. Tell him you are claustrophobic. They'll understand. Sorry if you already knew this. But if not it will give you info. If so, maybe it will let others know who's reading this, and who hasn't had one done yet. Karina PS what is lyrica???
Have you had an MRI done before? So many things to read on here, hard to get it straight sometimes. If you haven't it takes about an hour. You have to lie still on a table. They put you in a tube. Top is very close to your face, so if claustrophobic let them know. I am, was hard. I sang to myself during 2nd one. You can also get a pill to take before test, just ask your dr. Tell him you are claustrophobic. They'll understand. Sorry if you already knew this. But if not it will give you info. If so, maybe it will let others know who's reading this, and who hasn't had one done yet. Karina PS what is lyrica???
Not taking the lyrica would not of made a difference as this med builds up in the system,I am glad that he is doing an MRI.If its without contrast at least it is a start medically.
The Dr needs to specify with or without contrast.
The Dr needs to specify with or without contrast.
I didn't take the Lyrica the night before my neuro appt, or the morning of, because I didn't want to go in saying "I feel great!" when he asked how I was doing. When I told him that my legs and feet felt as if ants were stinging me ( a sensation I have even had on the Lyrica), he just said that it couldn't have anything to do with the compressed cranial nerves, which could be due to a larger than normal hyoid bone in my neck, so he upped my RX and told me to have an x-ray. He didn't seem to suspect a brain tumor, which was a relief. He offered to let me have an MRI if it would make me feel better, and I told him it would. I'm waiting on his office to schedule it. Does the dr have to request an MRI with contrast, or can you request it yourself? I hate to just take the Lyrica to mask symptoms, rather than find out what is causing them.
Well with me it seemed to take 100 years. Time always seems like it's in slow motion, when you are waiting for answers. I think it mainly depends on your dr and how soon they get back to you. If you are stressing over result, keep asking them for answers. Karina
I know what you mean. I had been really worried about MS, then realized it could be a brain tumor. Suddenly MS sounded GREAT! How long does it take to get results from the MRI? Shelly
Congrats on being able to do sodoku. My extent goes to word searches. Really enjoy them and always have. Yes you should be able to order or suggest ordering an MRI. It's your health and you need answers. Waiting for them is harder, then finding out.
I had to wait 2 months of stressful time, before I found out I DIDN'T have a brain tumor along with MS. So do what you can, to make yourself feel more at ease. Karina
I had to wait 2 months of stressful time, before I found out I DIDN'T have a brain tumor along with MS. So do what you can, to make yourself feel more at ease. Karina
Also, it turns out that the "pulse" I am hearing is pulsatile tinnitus, which is why combined with vertigo, my dr thinks the 8th cranial nerve is compressed.
Yes, I have memory problems. I finally started doing Sudoku puzzles to try and improve it. I seem to forget simple words, or names of things. I am seeing the neuro Wednesday, and hope that he does an MRI. Can I request one? Yes, I am asking if it could be MS. Thank you for your response.
Shelly
Shelly
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