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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
Thanks for the uplifting thoughts. I had an "episode" last night and was too scared to go back to the hospital given my last 11 day stay that was just under a week ago. I was standing with my walker in the kitchen and my ears began ringing. I became dizzy and told my daughter I needed to sit down. When I sat down, the entire room began spinning and I began feeling very "funny" - that's the best I can explain it. Srange. Funny. I began getting dry heaves and ended up curled up on the bathroom floor spinning and spinning. Vertigo like I have never had it before. Heaves. Spinning.... nothing would stop it. My daughter and her friend had to carry me to my bed because I could not balance at all. When I got in my bed, I began projectile vomiting. I was seeing double. Then - I simply passed out and asked my daughter to check on me every hour. She wanted to call 911, but I am too scared to go near that hospital again. When I woke up today, I felt better. But, scared. I don't know what that was, but it was very similar to what happened the day I was admitted to the hospital.
Now, my daughter is gone back to Massachusetts. They had to have an emergency landing for the smell of smoke on the plane. Their landing was greeted by fire trucks and ambulances. Bad day. I am here with my 7 year old. Alone. Feeling lightheaded. Weak and scared. I don't know what's wrong. I plan to call my Neurologist tomorrow. Anyone have any idea what this sounds like?
Bad day. Sad. Overwhelmed. On another note, my boss, and friend, committed suicide last night by swallowing 100 klonipin. He was my friend. We talked on Friday and he was FINE. I hurt. Physically and emotionally. The stress may be contributing to my condition, whatever it is..... but I can say for sure that my eyesight is being effected. My eyeballs hurt. Not a full headed migraine, but eye pressure. Nausea. Weakness. Some is expected, but I have had no improvement in one week and something very wrong last night.
Advice? Prayers appreciated. Especially for the family and friends of Rob Lattimer. By name if possible. There are many suffering due to his decision. I know this is probably not the place to bring this up, but it just goes along with my situation. It's adding severe emotion and I am alone (adult-wise, anyway)
Tired. Need rest. Head hurts. Muscles are cramping. Prayers to all......
Pamela
Now, my daughter is gone back to Massachusetts. They had to have an emergency landing for the smell of smoke on the plane. Their landing was greeted by fire trucks and ambulances. Bad day. I am here with my 7 year old. Alone. Feeling lightheaded. Weak and scared. I don't know what's wrong. I plan to call my Neurologist tomorrow. Anyone have any idea what this sounds like?
Bad day. Sad. Overwhelmed. On another note, my boss, and friend, committed suicide last night by swallowing 100 klonipin. He was my friend. We talked on Friday and he was FINE. I hurt. Physically and emotionally. The stress may be contributing to my condition, whatever it is..... but I can say for sure that my eyesight is being effected. My eyeballs hurt. Not a full headed migraine, but eye pressure. Nausea. Weakness. Some is expected, but I have had no improvement in one week and something very wrong last night.
Advice? Prayers appreciated. Especially for the family and friends of Rob Lattimer. By name if possible. There are many suffering due to his decision. I know this is probably not the place to bring this up, but it just goes along with my situation. It's adding severe emotion and I am alone (adult-wise, anyway)
Tired. Need rest. Head hurts. Muscles are cramping. Prayers to all......
Pamela
I know you are worried by your daughter leaving, but have faith that everything will work out. I won't be able to be on until the evening but if I get a chance, I will try to come on through the day. I know that others will be on too throughout the day so hang in there. It might help to place a new post with a heading I need to talk or for what ever you are feeling. You are not alone. We will be here for you. I'm sending you a gentle cyber hug right now. Please take care of yourself, rest when you need to.
My prayers are with you
Moki
My prayers are with you
Moki
I feel for you its great you have had so many replies and these people really know how you feel hun.
Im a mother of three and the hardest thing about all of this is my kids if i was on my own i could curl up and cry and cry which i have done on there school days its the over welming grief almost of a life your never have back of the times your miss, the questions why cant you play mummy or why cant you drive me to school today or come to my play, its the ups and downs of my cruel illness whatever it is that holds you in that ever hopefull place.
Iv just been through more test and one more MRI in Nov and till i get my results iv dedcided to except what i have that i have friends (no family mine died and my husbands are too old to help) my faith id be lost without that my church and my new firends on here. I find it hard to let go of things sometimes and push myself to hard my pride has kept mea prisoner in my own home so iv started to put things in place to help wheelchair, and other practical things so i and my kids dont miss out too much, it still sadens me for the life i used to have but i have to make new plans with this life.
I feel for your ongoing pain and i pray some relief for you and that you will get the help you need and for your fear to be taken away and peace to be in your heart.
Iv been amazes at the help i have gotten from my friends (some not) and the school have gotten involved in getting them there free school meals and just been very understanding, im trying to get a disabled badge and disability allowance to make my life easier while i wait to hear whats wrong.
It was agood chice not to do it in the doctors office, even though i went to the great teaching hospital in london and was on a ward i taken down to a little medical room/office type place then given my LP by the juinor which took him three attempts before he decided to use a smaller needle!! so lets hope they do use a smaller needle for your LP they drew 4 tubes of fluid off and a blood one too and told me i might have a six week wait for some of the test to come back.
My thoughts and prayers are with you Hun, we all care so much. keep us informed.
Samantha x
Im a mother of three and the hardest thing about all of this is my kids if i was on my own i could curl up and cry and cry which i have done on there school days its the over welming grief almost of a life your never have back of the times your miss, the questions why cant you play mummy or why cant you drive me to school today or come to my play, its the ups and downs of my cruel illness whatever it is that holds you in that ever hopefull place.
Iv just been through more test and one more MRI in Nov and till i get my results iv dedcided to except what i have that i have friends (no family mine died and my husbands are too old to help) my faith id be lost without that my church and my new firends on here. I find it hard to let go of things sometimes and push myself to hard my pride has kept mea prisoner in my own home so iv started to put things in place to help wheelchair, and other practical things so i and my kids dont miss out too much, it still sadens me for the life i used to have but i have to make new plans with this life.
I feel for your ongoing pain and i pray some relief for you and that you will get the help you need and for your fear to be taken away and peace to be in your heart.
Iv been amazes at the help i have gotten from my friends (some not) and the school have gotten involved in getting them there free school meals and just been very understanding, im trying to get a disabled badge and disability allowance to make my life easier while i wait to hear whats wrong.
It was agood chice not to do it in the doctors office, even though i went to the great teaching hospital in london and was on a ward i taken down to a little medical room/office type place then given my LP by the juinor which took him three attempts before he decided to use a smaller needle!! so lets hope they do use a smaller needle for your LP they drew 4 tubes of fluid off and a blood one too and told me i might have a six week wait for some of the test to come back.
My thoughts and prayers are with you Hun, we all care so much. keep us informed.
Samantha x
meanit - your poem struck a definite cord with me and brought tears to my eyes. THANK YOU.
To everyone else in this conversation, thanks to you all as well. Each story, each bit of encouragement, each prayer and each bit of love and understanding bring hope to me. I feel like I have found new and genuine friends in you all and I want you to know how much I appreciate it. Even when I am home alone and unable to walk or function, I can sit here and read. Type when my left hand allows. Cry and laugh. Thanks so much.
I am working on several leads for help within my community. Church, social services and some people who I think are friends, but never came through when I was in the hospital for 11 days, so I am about ready to write them off. I really needed their support and they were not there.....
My daughter leaves tomorrow, which will be difficult, so I may need to talk then. Actually, I am sure I will need to talk then. My PT came yesterday and says I am using the walker too much and need to get back in the wheelchair and give myself a break. I have been known to be stubborn which may be a downfall right now, but I also know that pushing yourself is part of the recovery process. Maybe if I had not been so mistreated in the hospital I would be able to just lay down and relax, but I am so fired up that I cannot sit still. It's painful. Yesterday I felt like I had been run over by a bus. I fell asleep on the couch and was unable to get up to get to my bedroom. 5 mg of valium every 8 hours on schedule does nothing for me (well, I say that, but it's possible I would be a complete and total mess without it). The baclofen and neurontin are working OK, but not great and I am becoming anti-medicine after being essentially poisoned in the hospital.
Feeling a little better at moments, terrible at others. Can someone please be available tomorrow to chat after Amanda leaves. I am AFRAID.
Tired and sore. But trying to remain positive and in control. (That's the control freak part of me). Life cannot and will not fall apart now. I will get through this, with all of you I hope. My prayers are with each and every one of you. I would address you all individually, but I have received so much support from you all that I need to address everyone together. Sorry. The less typing the better.
Fran and Terri - any news on your MRI yet?????
Thinking of you all
Pamela
To everyone else in this conversation, thanks to you all as well. Each story, each bit of encouragement, each prayer and each bit of love and understanding bring hope to me. I feel like I have found new and genuine friends in you all and I want you to know how much I appreciate it. Even when I am home alone and unable to walk or function, I can sit here and read. Type when my left hand allows. Cry and laugh. Thanks so much.
I am working on several leads for help within my community. Church, social services and some people who I think are friends, but never came through when I was in the hospital for 11 days, so I am about ready to write them off. I really needed their support and they were not there.....
My daughter leaves tomorrow, which will be difficult, so I may need to talk then. Actually, I am sure I will need to talk then. My PT came yesterday and says I am using the walker too much and need to get back in the wheelchair and give myself a break. I have been known to be stubborn which may be a downfall right now, but I also know that pushing yourself is part of the recovery process. Maybe if I had not been so mistreated in the hospital I would be able to just lay down and relax, but I am so fired up that I cannot sit still. It's painful. Yesterday I felt like I had been run over by a bus. I fell asleep on the couch and was unable to get up to get to my bedroom. 5 mg of valium every 8 hours on schedule does nothing for me (well, I say that, but it's possible I would be a complete and total mess without it). The baclofen and neurontin are working OK, but not great and I am becoming anti-medicine after being essentially poisoned in the hospital.
Feeling a little better at moments, terrible at others. Can someone please be available tomorrow to chat after Amanda leaves. I am AFRAID.
Tired and sore. But trying to remain positive and in control. (That's the control freak part of me). Life cannot and will not fall apart now. I will get through this, with all of you I hope. My prayers are with each and every one of you. I would address you all individually, but I have received so much support from you all that I need to address everyone together. Sorry. The less typing the better.
Fran and Terri - any news on your MRI yet?????
Thinking of you all
Pamela
Hang in there!!! -I just got into this forum and noticed your first note and all of the responses. I am not doctor and I don't play one on TV bust everything you told medicallly---say MS. Been thru it all with my husband and your story is oh so painfully familiar. Do not let them do a spinal tap in the doctor's office. It should be done in a hopital at the very least but I recoomend it be done in radiology with a guided needle---you are in eneough pain already, why add it to it. Be strong and demand what you want from these doctors--it is okay to firmly get your point across, without being rude, it is okay to push them for the ansers and it is defintely okay to cry. Attaching a a poem I wrote-some buds out there have already read it----but this is for you today!
A DAY WITHOUT PAIN
A DAY WITHOUT PAIN IS WHAT I WISH FOR YOU,
A DAY WHEN YOUR SMILE IS GENUINE AND TRUE.
A DAY WHEN YOUR LEGS ARE WORKING JUST FINE,
A DAY WHEN YOU HAVE NO MORE MOUNTAINS TO CLIMB.
A DAY WHEN YOU BREATHE THE FRESH AIR WITH EASE,
A DAY WITHOUT WORRY THAT BRINGS YOU TO YOUR KNEES.
A DAY WHEN YOUR LAUGH IS SO LOUD AND CLEAR,
A DAY WHEN A TOUCH WON’T BRING YOU TO TEARS.
A DAY WHEN YOUR MIND IS SHARP AS A TACK,
A DAY WHEN YOU HAVE NO TROUBLE LOOKING BACK.
A DAY WHEN YOU RUN ACROSS THE WARM SAND,
A DAY WHEN YOU DON’T NEED TO HOLD ANYONES HAND.
A DAY WHEN YOUR TROUBLES HAVE ALL MOVED AWAY,
A DAY FULL OF ANSWERS AND HELP HERE TO STAY.
A DAY WHEN YOU STOP SHAKING INSIDE AND OUT,
A DAY YOU LOOK AHEAD WITHOUT FEAR AND DOUBT.
A DAY WHEN YOUR HEAD IS FREE FROM PAIN,
A DAY FULL OF SUNSHINE AND NO MORE RAIN.
A DAY WITHOUT PAIN IS WHAT I WISH FOR YOU,
A DAY FULL OF SKIES THAT ARE NOTHING BUT BLUE.
To no more pain, to no more worry, to no more fear. To answers, to help and to the future! I love you Tim-ALWAYS……Amy 5/07 feel free to copy it and hang it up-anyone who needs to give themselves or their loved ones HOPE-take my poem as a gift. Stay strong Pamela--Love, Meanit
A DAY WITHOUT PAIN
A DAY WITHOUT PAIN IS WHAT I WISH FOR YOU,
A DAY WHEN YOUR SMILE IS GENUINE AND TRUE.
A DAY WHEN YOUR LEGS ARE WORKING JUST FINE,
A DAY WHEN YOU HAVE NO MORE MOUNTAINS TO CLIMB.
A DAY WHEN YOU BREATHE THE FRESH AIR WITH EASE,
A DAY WITHOUT WORRY THAT BRINGS YOU TO YOUR KNEES.
A DAY WHEN YOUR LAUGH IS SO LOUD AND CLEAR,
A DAY WHEN A TOUCH WON’T BRING YOU TO TEARS.
A DAY WHEN YOUR MIND IS SHARP AS A TACK,
A DAY WHEN YOU HAVE NO TROUBLE LOOKING BACK.
A DAY WHEN YOU RUN ACROSS THE WARM SAND,
A DAY WHEN YOU DON’T NEED TO HOLD ANYONES HAND.
A DAY WHEN YOUR TROUBLES HAVE ALL MOVED AWAY,
A DAY FULL OF ANSWERS AND HELP HERE TO STAY.
A DAY WHEN YOU STOP SHAKING INSIDE AND OUT,
A DAY YOU LOOK AHEAD WITHOUT FEAR AND DOUBT.
A DAY WHEN YOUR HEAD IS FREE FROM PAIN,
A DAY FULL OF SUNSHINE AND NO MORE RAIN.
A DAY WITHOUT PAIN IS WHAT I WISH FOR YOU,
A DAY FULL OF SKIES THAT ARE NOTHING BUT BLUE.
To no more pain, to no more worry, to no more fear. To answers, to help and to the future! I love you Tim-ALWAYS……Amy 5/07 feel free to copy it and hang it up-anyone who needs to give themselves or their loved ones HOPE-take my poem as a gift. Stay strong Pamela--Love, Meanit
HI: So very sorry. Its horrible not knowing what things are, I took ill in July of 06 in the summer, went intot rh bathroom to clean, and had the worst head pressure and rt arm weakness and jaw come on all of a sudden, i thought i was havinga stroke. This was a biog deal for me. i have no family history of MS and only thing i had wa sMitral Valve prolpase not bad. I drank smoke and enjoyed life. I went rt to the ER where the couldn;t figure it out, finally went to a neurologist and said my hea dis going to explode i could n;t focus ride ther ein the car was unbearable i couldn;t be hospitalized as i had olya reflex sand could walk..but event hat wa s compromised a few weeks into it , wors eand worse symptoms arose, the neuro was surpirsed to find i ahd two 1.2 and 1.4 cm lesions on both side of brain..w mass affect on the one side the rt. It was horrible, I told my mothe rwhos wayy older than me ..i am 42 this june i was dying and too remember where i put my will.. my husband left his job ina nother state and w e let our condo go and had to move back to my home town and my moms.. thanfully she lives else where.. he wa sfurious he had to lose job.. He is still out of work a yr later, and is older than me. Neuro told me to do the lumbar but then changed his mind and said it was too dangerous as i had to do another MRI that showed spots less prominent and no brain tumor which they couldn;t rule out at first,, and i then lost my husbands health insurance. and had to wait 5 months for a new one to kick in .. it doesn;t cover dr. appts,, its beena nightmare.. I finally after waiting 5 months to see an MS guy saw one, he looked a treports and said it may not be MS , but they sayi am atypical to be sure they have to do another MRI of brain w gadilenium , i had chest pain w that weezing so i ahve n;t gone. I know how bad the head pain and everything else can be, i was an active person, and the one day when i took my two little neices out to store after finding this and ll the symptoms thought i wa shaving a stroke iw a ssoo weak.. I was scared to death and went home, i also had rt eye pain and no vision changes,, but could hardly walk, almost passe dout, now i am having trouble swallowing, i know some ERs can be very hard on you,, don;t let it get to you. be persistent and i know how you feel, Let us know and be brave.. i feel so scared too, and this all all new to me. MY husband left me 6 times after they found this, and it broke me down, he claimed he couldnlt handle it. I was so alone, but thank g for this place and friends.. Peace, love Kit
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