Aa
90% chance of MS at age 40 - spinal tap next step
I am joining this forum at the suggestion of Quixotic and after communicating with c-spine patients and related problems, however, it appears that my c-spine disk herniation (3) is secondary to a very probable diagnosis of MS. Even typing is tiring for me. That's depressing.
I have had vertigo for about one year, on and off. Most recently, my vertigo has returned times 8 weeks. I thought my eardrum was going to explode and my ENT assured me that my ear was completely fine, but that I was having facial parastesias, later confirmed to be trigeminal neuralgia. TGN is the worst pain I have ever experienced. The vertigo continues, and my MRI shows "well over 12 white matter lesions", one being on the lower right of my brain stem and causing left-sided numbness. I get double vision in my left eye and most recently, blackouts.
My Neuro examined me for the first time yesterday, after being referred to him from my NeuroSurgeon who follows a stable internal carotid periopthalmic brain aneurysm. He stated that he wanted to perform and exam prior to reviewing any images or radiology reports to have an unbiased opinion with regard to any diagnosis. My vertigo was very apparent in the exam. When closing my eyes and holding my hands out straight in front of me, he said that my left arm dropped about 6-8 inches below the left. When standing and closing my eyes, he had to catch me. When walking a straight line, heel to toe, I could not balance, and was caught once again. Various other tests were performed for reflexes, etc.... He left the room and reviewed my films, knowing only so-far that I had an abnormal MRI reading. When he returned he explained that I had well over a dozen lesions in the brain, mostly at the joining of the white and grey matter areas, with a very large and oblong lesion in the middle of the white matter. The concern was that my MRI of one year prior did not show lesions. Whatever this is, it is rapidly progressing. I asked what he thought it was and he told me that after the exam and prior to reading my MRI he suspected MS. After reading the MRI, he further suspected MS. He is fairly certain (about 90%) that we are dealing with MS (there is also a genetic factor with a cousin recently diagnosed at 25 years old), we however, need to rule out: Lupus, Lyme Disease, HIV (scary), syphillis (even more scary) and I can't even remember what else. Negative results for these, which are the only diseases he is aware of that would cause scattered white matter lesions, will result in a positive dx for MS.
I have my spinal tap scheduled on Tuesday. He said he could do it in the office, but he would have to use a larger needle than they use in the hospital, so I opted for the hospital...... My muscle weakness continues, fatigue is terrible although it is counter-acted by the anxiety and heart palpitations I am having.
I am a single mother of a 7 year old boy. Day to day functioning is a challenge. TGN is debilitating along with the vertigo. I do not drive unless absolutely necessary and each trip is a nightmare. My child wants to know why I am sick all the time and don't make time to play outside like we used to. Depression is beginning to get the best of me. I have crying fits on the floor, bed, wherever. Usually in private. I have no family within 600 miles. Nightime is lately being spent answering questions on the phone from friends and family, and essentially ignoring my 7 year old who desperately needs my attention. I am short-tempered and tired. I don't sit down to eat and have lost 25 pounds in 6 weeks. The left side of my face is swelling and my left eye shows increased pressure, apparently caused by the TGN.
I am scared to death and angry at the same time. I refuse to let this get the best of me, whatever it is, but feel based on past health experiences that fighting this MS, or whatever it ends up being, will be difficult to say the least. Where do you see the light? When do you see the light? I am alone and scared. I am sure this is MS, but need to wait for the answer. I don't know how long the tests take, but since they are drawing the CSF at the hospital, as well as blood tests, I would imagine they will run them there which should be faster that sending them out to a lab. I will continue to read and completely sympathize with all involved in this forum.... but together we can join and reinforce eachother, pray for eachother and encourage and inform eachother.
Thanks for having me.
Pamela
I have had vertigo for about one year, on and off. Most recently, my vertigo has returned times 8 weeks. I thought my eardrum was going to explode and my ENT assured me that my ear was completely fine, but that I was having facial parastesias, later confirmed to be trigeminal neuralgia. TGN is the worst pain I have ever experienced. The vertigo continues, and my MRI shows "well over 12 white matter lesions", one being on the lower right of my brain stem and causing left-sided numbness. I get double vision in my left eye and most recently, blackouts.
My Neuro examined me for the first time yesterday, after being referred to him from my NeuroSurgeon who follows a stable internal carotid periopthalmic brain aneurysm. He stated that he wanted to perform and exam prior to reviewing any images or radiology reports to have an unbiased opinion with regard to any diagnosis. My vertigo was very apparent in the exam. When closing my eyes and holding my hands out straight in front of me, he said that my left arm dropped about 6-8 inches below the left. When standing and closing my eyes, he had to catch me. When walking a straight line, heel to toe, I could not balance, and was caught once again. Various other tests were performed for reflexes, etc.... He left the room and reviewed my films, knowing only so-far that I had an abnormal MRI reading. When he returned he explained that I had well over a dozen lesions in the brain, mostly at the joining of the white and grey matter areas, with a very large and oblong lesion in the middle of the white matter. The concern was that my MRI of one year prior did not show lesions. Whatever this is, it is rapidly progressing. I asked what he thought it was and he told me that after the exam and prior to reading my MRI he suspected MS. After reading the MRI, he further suspected MS. He is fairly certain (about 90%) that we are dealing with MS (there is also a genetic factor with a cousin recently diagnosed at 25 years old), we however, need to rule out: Lupus, Lyme Disease, HIV (scary), syphillis (even more scary) and I can't even remember what else. Negative results for these, which are the only diseases he is aware of that would cause scattered white matter lesions, will result in a positive dx for MS.
I have my spinal tap scheduled on Tuesday. He said he could do it in the office, but he would have to use a larger needle than they use in the hospital, so I opted for the hospital...... My muscle weakness continues, fatigue is terrible although it is counter-acted by the anxiety and heart palpitations I am having.
I am a single mother of a 7 year old boy. Day to day functioning is a challenge. TGN is debilitating along with the vertigo. I do not drive unless absolutely necessary and each trip is a nightmare. My child wants to know why I am sick all the time and don't make time to play outside like we used to. Depression is beginning to get the best of me. I have crying fits on the floor, bed, wherever. Usually in private. I have no family within 600 miles. Nightime is lately being spent answering questions on the phone from friends and family, and essentially ignoring my 7 year old who desperately needs my attention. I am short-tempered and tired. I don't sit down to eat and have lost 25 pounds in 6 weeks. The left side of my face is swelling and my left eye shows increased pressure, apparently caused by the TGN.
I am scared to death and angry at the same time. I refuse to let this get the best of me, whatever it is, but feel based on past health experiences that fighting this MS, or whatever it ends up being, will be difficult to say the least. Where do you see the light? When do you see the light? I am alone and scared. I am sure this is MS, but need to wait for the answer. I don't know how long the tests take, but since they are drawing the CSF at the hospital, as well as blood tests, I would imagine they will run them there which should be faster that sending them out to a lab. I will continue to read and completely sympathize with all involved in this forum.... but together we can join and reinforce eachother, pray for eachother and encourage and inform eachother.
Thanks for having me.
Pamela
Howdy and welcome! Never worry about pouring your heart out here, we're all very willing listeners and love to give a friendly hug or encouraging words. We all need them at some point or other. It must be very difficult right now, you'll be angry and grieving for the things you lost, but keep your chin up and focus on the things you are still able to enjoy. Your life will change, but it is not over. It sounds like your diagnosis will be a quick one. That is a true blessing. I'm hopeful that you'll be getting on some meds right quick that will help you through this period.
Please keep us all informed. We're all rooting for ya.
Fishyfish
Please keep us all informed. We're all rooting for ya.
Fishyfish
Welcome!
Trigeminal Neuralgia, fun stuff that is. Sorry to hear your having such a rough time of it. I had TN about 3 years ago and have had only one episode since thank god. I thought the left side of my head was going to explode. Sometimes its referred to as the Suicide Disease. If you've ever had it you'd know.
Whats weird is I get this odd feeling on the side of my head several hours before, just has an odd sensation. I understand that there are treatments but I haven't sought any of them out. Just hoping it doesn't come back!
OK, so your going in for an LP. Let me give some good advice.
I hate invasive procedures more than most. I recently had an LP both with and without sedation. I didn't feel a thing differently in either procedure. So if your nervous about it you can ask to be sedated, you still will be awake, but maybe more relaxed.
Most importantly, if you experience any headache after the procedure, and it can take sometimes up to 36-48 hours but normally shows prior to that get scheduled for a blood patch. Don't fool around and think its just a little headache, it will get much worse.
When they do an LP they remove fluid and it leaves a void. We all create new CSF daily but sometimes it doesn't flow quickly enough back into that void. It creates an imbalance of pressure and that will cause a headache like you've never had. The blood patch is the same procedure as the LP but instead of taking fluid out they put some of your blood in to fill the void. The headaches stop almost instantly. By the way, you can tell if the headache you have is from the LP. If you lay down and 15-20 minutes later it is gone and then reappears when you stand-up, call your doctor.
Hang tough, your not in this alone. I'm sure you have friends around you for support and you always have us. This is a support group first and foremost. We share experiences and try to offer what help and support we can.
MS is not a death sentence, I for one think its going to be a pretty great day every time I wake up (of course falling asleep is the real issue). I was having my LP done back in Sept and thinking to myself how life sucks sometimes. I only had to look at the guy next to me that was 10 times worse off than me to realize it could be worse, a lot worse. So try to keep a smile on your face, sometimes its not easy, but I bet your 7 year old knows when your smiling and when your not. Give him or her a big hug and think of all the things you have to look forward too, together.
Please stick around and keep us up to date, and feel free to grab a cup of coffee, sit back, and have a slow chat with some friends. I get the feeling your younger than some of us here, so be warned this is not instant messaging. Its a little slower but gets the job done nicely.
Johnny
Trigeminal Neuralgia, fun stuff that is. Sorry to hear your having such a rough time of it. I had TN about 3 years ago and have had only one episode since thank god. I thought the left side of my head was going to explode. Sometimes its referred to as the Suicide Disease. If you've ever had it you'd know.
Whats weird is I get this odd feeling on the side of my head several hours before, just has an odd sensation. I understand that there are treatments but I haven't sought any of them out. Just hoping it doesn't come back!
OK, so your going in for an LP. Let me give some good advice.
I hate invasive procedures more than most. I recently had an LP both with and without sedation. I didn't feel a thing differently in either procedure. So if your nervous about it you can ask to be sedated, you still will be awake, but maybe more relaxed.
Most importantly, if you experience any headache after the procedure, and it can take sometimes up to 36-48 hours but normally shows prior to that get scheduled for a blood patch. Don't fool around and think its just a little headache, it will get much worse.
When they do an LP they remove fluid and it leaves a void. We all create new CSF daily but sometimes it doesn't flow quickly enough back into that void. It creates an imbalance of pressure and that will cause a headache like you've never had. The blood patch is the same procedure as the LP but instead of taking fluid out they put some of your blood in to fill the void. The headaches stop almost instantly. By the way, you can tell if the headache you have is from the LP. If you lay down and 15-20 minutes later it is gone and then reappears when you stand-up, call your doctor.
Hang tough, your not in this alone. I'm sure you have friends around you for support and you always have us. This is a support group first and foremost. We share experiences and try to offer what help and support we can.
MS is not a death sentence, I for one think its going to be a pretty great day every time I wake up (of course falling asleep is the real issue). I was having my LP done back in Sept and thinking to myself how life sucks sometimes. I only had to look at the guy next to me that was 10 times worse off than me to realize it could be worse, a lot worse. So try to keep a smile on your face, sometimes its not easy, but I bet your 7 year old knows when your smiling and when your not. Give him or her a big hug and think of all the things you have to look forward too, together.
Please stick around and keep us up to date, and feel free to grab a cup of coffee, sit back, and have a slow chat with some friends. I get the feeling your younger than some of us here, so be warned this is not instant messaging. Its a little slower but gets the job done nicely.
Johnny
Welcome to our cyber family,your never alone here.
You have a lot of fight in you,you will over come this.
The waiting game is the hardest and in the stages of a DX depression is common many of us have been where your at.
Its okay to be angry,I was mad at the world as I first seen what this disease was taking from me,that has passed and I am back to my old self and fight this disease with a fighting positive attitude now.
I'm also a single mother of children ,when I was originally DX'd they were 3,5,6 and 10.now my youngest is 12.Its been a battle,but this disease has made me a stronger person,with limitations on most days.
You will get over this first hump,I promise
What your feeling is normal.
Theres meds that help with the symptoms and theres the disease modifying meds that slow down the progression.
Remember we are here for you.
T
You have a lot of fight in you,you will over come this.
The waiting game is the hardest and in the stages of a DX depression is common many of us have been where your at.
Its okay to be angry,I was mad at the world as I first seen what this disease was taking from me,that has passed and I am back to my old self and fight this disease with a fighting positive attitude now.
I'm also a single mother of children ,when I was originally DX'd they were 3,5,6 and 10.now my youngest is 12.Its been a battle,but this disease has made me a stronger person,with limitations on most days.
You will get over this first hump,I promise
What your feeling is normal.
Theres meds that help with the symptoms and theres the disease modifying meds that slow down the progression.
Remember we are here for you.
T
Oh girl I am so sorry that you are having such a hard time. I understand the anger and fear you are feeling. The not knowing is the worst I find. It leaves the imagination to go wild. You are in hard place being a single mom and fighting depression at the same time. But you also show a lot of spunk. Hang on to that. Maybe you could find a church group or counselling group to help you get through this. It must be hard with family so far away. This forum is great, with some really incredible people. Quix is aces!! I wish I could say something really profound right now that would make you feel better, but my mind is not functioning too well at the moment. (or most days for that matterlol) I'm just praying for you to get a diagnosis soon and that they can get you on some treatment that will alleviate some of your symptoms and maybe you can get a little normalacy (is that a word?) in your life again.
My prayers will be you
Moki
My prayers will be you
Moki
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