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
40th! Well heres 40 virtual slaps on the bum. I knew you were younger! 40 is easy, 45 OK, 50 and you know your starting to get old. I was retiring from the Air Force and I had kids working for me that weren't even born when I joined.. that makes you feel old.
Kids love board games, card games, movie time.. anytime spent with a parent is usually good. Don't worry about the ex and what he might or might not try to do. Just don't burn the house down trying to get forty candles on the same cake!
Age is so meaningless. You are as young as you feel. Maybe I got that wrong, isn't it your as young as the one your feeling.. lol anyway, try to do something special today, take a walk, read a book, maybe treat yourself special.. Relax later with a nice bubble bath and glass of wine.
Life is a journey, an adventure. What your going through is just part of the journey. There are going to be lots more good times ahead, and maybe some more bad, but everyone here is praying for you, to give you strength and help you through this difficult time.
OK, over my knee, I called it first!
Johnny
Kids love board games, card games, movie time.. anytime spent with a parent is usually good. Don't worry about the ex and what he might or might not try to do. Just don't burn the house down trying to get forty candles on the same cake!
Age is so meaningless. You are as young as you feel. Maybe I got that wrong, isn't it your as young as the one your feeling.. lol anyway, try to do something special today, take a walk, read a book, maybe treat yourself special.. Relax later with a nice bubble bath and glass of wine.
Life is a journey, an adventure. What your going through is just part of the journey. There are going to be lots more good times ahead, and maybe some more bad, but everyone here is praying for you, to give you strength and help you through this difficult time.
OK, over my knee, I called it first!
Johnny
Happy 40th birthday to you! It only comes along once, so try to enjoy it, if only with a Twinkie and a smile. :)
Don't worry too much about the CSF test. Some can be bad, but most are okay. Mine was pretty easy. You've already had something similar if you had a c-section. Instead of putting stuff into your back, they just take it out. Just drink lots of fluids and lots of caffeine that day, and take it easy.
Your son will be fine without outside play every day. Love is what matters the most, not how many balls get kicked around. You will just have to adapt...try indoor board games or watching shows together if you're too tired for active play. Root him on while he plays video games. You could also invite some of his school buddies to come and play to keep him company outside. You might be able to sign him up for things like the Boys and Girls club after school or something similar to keep him active.
Everything is in transition now, but pretty soon things will calm down and your life will get used to the new normal. Enjoy your birthday, and keep that sense of humor!
Fishyfish
Don't worry too much about the CSF test. Some can be bad, but most are okay. Mine was pretty easy. You've already had something similar if you had a c-section. Instead of putting stuff into your back, they just take it out. Just drink lots of fluids and lots of caffeine that day, and take it easy.
Your son will be fine without outside play every day. Love is what matters the most, not how many balls get kicked around. You will just have to adapt...try indoor board games or watching shows together if you're too tired for active play. Root him on while he plays video games. You could also invite some of his school buddies to come and play to keep him company outside. You might be able to sign him up for things like the Boys and Girls club after school or something similar to keep him active.
Everything is in transition now, but pretty soon things will calm down and your life will get used to the new normal. Enjoy your birthday, and keep that sense of humor!
Fishyfish
Morning Pamela,
First thing, yes, we're all here and we're all listening. Though most of us do not know each other in person, we can relate to each others pain, both physically and emotionally.
So welcome to our group and if nothing else, know that you will always have suport here and open ears and virtual ((((HUGS))))
I have an exceedingly low white blood cell count and (maybe Quix can help me with the right term here) the rate at which my blood cells renew themselves is way too low as well. As a result, somone around me sneezes and I have to go to the ER two days later with a bronchial infection, pneumonia, or some other **** they don't bother to figure out, just dose me up. I'm usually out of commission for a few weeks at the least and it is never pleasant.
My body does not heal well from anything; the birth of my son went from perfectly normal to emergency c-section to suspected sepsis to an overstay in the hospital and IV anti-biotics for a week and a half for us both...my son is almost two and my scar has not fully healed.
We all understand your exhaustion and of course, your fear. There is no easy solution, but here, there is love and support and understanding.
I hope you find your diagnosis soon and can begin a treatment path that will help ease some of your physical pain and lessen your symptoms. Until then focus on building your inner strength (for you and your son) and persevere...it's not the end of the road, but the beginning of a new way of life!
We're all praying for you and you are in our thoughts,
Jo
First thing, yes, we're all here and we're all listening. Though most of us do not know each other in person, we can relate to each others pain, both physically and emotionally.
So welcome to our group and if nothing else, know that you will always have suport here and open ears and virtual ((((HUGS))))
I have an exceedingly low white blood cell count and (maybe Quix can help me with the right term here) the rate at which my blood cells renew themselves is way too low as well. As a result, somone around me sneezes and I have to go to the ER two days later with a bronchial infection, pneumonia, or some other **** they don't bother to figure out, just dose me up. I'm usually out of commission for a few weeks at the least and it is never pleasant.
My body does not heal well from anything; the birth of my son went from perfectly normal to emergency c-section to suspected sepsis to an overstay in the hospital and IV anti-biotics for a week and a half for us both...my son is almost two and my scar has not fully healed.
We all understand your exhaustion and of course, your fear. There is no easy solution, but here, there is love and support and understanding.
I hope you find your diagnosis soon and can begin a treatment path that will help ease some of your physical pain and lessen your symptoms. Until then focus on building your inner strength (for you and your son) and persevere...it's not the end of the road, but the beginning of a new way of life!
We're all praying for you and you are in our thoughts,
Jo
HAPPY 40TH BIRTHDAY for tomorrow :-) Despite everything that is going on, I hope that you can take some time out from all this to celebrate. I'll be thinking of you!
Mel
Mel
Johnny Utah and fishyfish, your names were included in message above, but the space is too small and it cut them off. Thanks for listening.
What a wonderful way to begin the morning with all of your responses. I appreciate the warm welcome and it makes me see a bit of light knowing that you all are here and in the same type of circumstance. I am so scared. My TN is constant. Unrelenting. Every day. It woke me up this morning at 5:14am, so I am short on sleep, emotional, in pain, on meds (I took my 150mg of Lyrica this morning with about 30% relief). I cannot take the pain.
Johnny Utah, sounds like you understand the TN, but could you imaging having it every day, all day, at this point today, going on 9 weeks. I am fortunate to be out of work on workman's comp for a leg injury and the company is being difficult with regard to letting me return. I guess God works in mysterious ways. I need this time to get things in order and get a proper dx, so I refuse to fight with them to return to work. The combination of left sided weakness in addition to a severe ankle sprain with torn ligaments and tendons, and resulting neuropathy and RSD (complex regional sympathetic dystrophy?) on the left side, is confusing and hard to deal with. I walk with a limp like my leg is dragging. I don't know if this is from the spinal blocks they did for the injury or a consequence of the MS.
At this point, I have no doubts about my diagnosis, however, will hope for the best. What is THAT by the way??? HIV, Lyme Disease, something else??????? I have been tested already in the past year for all of the other possibilities due to general overall illness and inability to heal. When someone around me has a cold, I get and upper respiratory infection, fluid behind the ears, pharyngitis (someone telling me to be quiet? lol), sometimes pneumonia and usually I then develop the flu. What one person heals from in a few days to a week takes me literally weeks at a time.
I am exhausted, yet I cannot sleep, which is very unusual for me. I am waiting for the Neuro's office to open and am going to ask him to call in something to help me sleep. I used to use clonazapam. Maybe that will work. In the meantime, thank you all for LETTING ME VENT. I need rest. But I cannot get it. I am trying to laugh as much as possible and yesterday after my son told me that he told his Dad that Mommy is sick all the time and laying down and I don't take him outside to play, I TOOK HIM OUTSIDE AND KICKED A HUGE BALL AROUND. Last thing I need is a custody battle with the accusation that I cannot properly care for my son. But, isn't that providing security, shelter, food, clothing and love????? Isn't that OK for now? Why does it have to be this hard?????????????????
I am fearful of the test. The pain. The possible headaches. I think I will ask to be sedated. I am fearful that my ex will take this and use it against me. My life feels like it is falling apart at the seams. But, I am still trying to smile. For my son and for my soul. Don't forget to try and laugh, guys. It's the ONLY thing getting me through right now. Maybe it's part of the acceptance process.... maybe denial.
I am about 99% sure this is MS. Anything else will most likely be just as devastating. I cannot live with this TN pain every day. I cannot be so medicated that I cannot take care of my son each day. Sorry. I am venting. I am ANGRY. I am sad. I am worried and confused. I am alone. I have church family that sat with me through the neuro visit the other day right after the ER visit that showed increased pressure in my left eye and the ER doc, probably an intern, told my pastor that if I did not go immediately to the Opthamologist, I would GO BLIND within a few hours. The opthamologist said he was over-reacting. They gave me IV benadryl, compazine and dilaudid (sp?) in the ER and even though I still had increased pressure in the Opthamologist's office, it was not acute glaucoma as suspected, but I wonder if the benadryl helped decrease the eye pressure prior to her exam. I am afraid I may go blind in my left eye. There's so much pressure. It's terrible pain.
I'll be quiet now. Maybe I'll stop and meditate. Tomorrow's my 40th birthday, and I can't seem to be happy about it. Seems like life's falling apart. Thanks for listening. Thanks for just being here. I know it's just a computer screen - but I can feel you with me. Thank you all so much........
Pamela
Johnny Utah, sounds like you understand the TN, but could you imaging having it every day, all day, at this point today, going on 9 weeks. I am fortunate to be out of work on workman's comp for a leg injury and the company is being difficult with regard to letting me return. I guess God works in mysterious ways. I need this time to get things in order and get a proper dx, so I refuse to fight with them to return to work. The combination of left sided weakness in addition to a severe ankle sprain with torn ligaments and tendons, and resulting neuropathy and RSD (complex regional sympathetic dystrophy?) on the left side, is confusing and hard to deal with. I walk with a limp like my leg is dragging. I don't know if this is from the spinal blocks they did for the injury or a consequence of the MS.
At this point, I have no doubts about my diagnosis, however, will hope for the best. What is THAT by the way??? HIV, Lyme Disease, something else??????? I have been tested already in the past year for all of the other possibilities due to general overall illness and inability to heal. When someone around me has a cold, I get and upper respiratory infection, fluid behind the ears, pharyngitis (someone telling me to be quiet? lol), sometimes pneumonia and usually I then develop the flu. What one person heals from in a few days to a week takes me literally weeks at a time.
I am exhausted, yet I cannot sleep, which is very unusual for me. I am waiting for the Neuro's office to open and am going to ask him to call in something to help me sleep. I used to use clonazapam. Maybe that will work. In the meantime, thank you all for LETTING ME VENT. I need rest. But I cannot get it. I am trying to laugh as much as possible and yesterday after my son told me that he told his Dad that Mommy is sick all the time and laying down and I don't take him outside to play, I TOOK HIM OUTSIDE AND KICKED A HUGE BALL AROUND. Last thing I need is a custody battle with the accusation that I cannot properly care for my son. But, isn't that providing security, shelter, food, clothing and love????? Isn't that OK for now? Why does it have to be this hard?????????????????
I am fearful of the test. The pain. The possible headaches. I think I will ask to be sedated. I am fearful that my ex will take this and use it against me. My life feels like it is falling apart at the seams. But, I am still trying to smile. For my son and for my soul. Don't forget to try and laugh, guys. It's the ONLY thing getting me through right now. Maybe it's part of the acceptance process.... maybe denial.
I am about 99% sure this is MS. Anything else will most likely be just as devastating. I cannot live with this TN pain every day. I cannot be so medicated that I cannot take care of my son each day. Sorry. I am venting. I am ANGRY. I am sad. I am worried and confused. I am alone. I have church family that sat with me through the neuro visit the other day right after the ER visit that showed increased pressure in my left eye and the ER doc, probably an intern, told my pastor that if I did not go immediately to the Opthamologist, I would GO BLIND within a few hours. The opthamologist said he was over-reacting. They gave me IV benadryl, compazine and dilaudid (sp?) in the ER and even though I still had increased pressure in the Opthamologist's office, it was not acute glaucoma as suspected, but I wonder if the benadryl helped decrease the eye pressure prior to her exam. I am afraid I may go blind in my left eye. There's so much pressure. It's terrible pain.
I'll be quiet now. Maybe I'll stop and meditate. Tomorrow's my 40th birthday, and I can't seem to be happy about it. Seems like life's falling apart. Thanks for listening. Thanks for just being here. I know it's just a computer screen - but I can feel you with me. Thank you all so much........
Pamela
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