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
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
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 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
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
Ramballa,
You've gotten some great advice here, and I just wanted to wish you well, and welcome you to the forum too, and I'm glad you found us.
Johnny-
Soldier boys! Always looking to give someone a beat down (only kidding)! Your in the right place Johnny! We all need some of your straight talk! Looks like we've got the perfect mix now, nurturing, educational, humorous, and now. . . . some Utah. BTW - Just wanted to send you a thank you for joining the forum, without some of your words, we might become melingerers (sp?). You know what I'm saying here, otherwise, we might go TU! I think you'll know you will know what that means.
SL
You've gotten some great advice here, and I just wanted to wish you well, and welcome you to the forum too, and I'm glad you found us.
Johnny-
Soldier boys! Always looking to give someone a beat down (only kidding)! Your in the right place Johnny! We all need some of your straight talk! Looks like we've got the perfect mix now, nurturing, educational, humorous, and now. . . . some Utah. BTW - Just wanted to send you a thank you for joining the forum, without some of your words, we might become melingerers (sp?). You know what I'm saying here, otherwise, we might go TU! I think you'll know you will know what that means.
SL
SL, Fishyfish, JlJo and one hilarious Johnny Utah,
Firstly, many thanks for the 40th birthday well-wishes. Unfortunately, I was admitted to the local hospital on that Friday, the day before the BIG CELEBRATION. I began with pain behind my left eye which was severe, to say the least and facial swelling, on the left only. That progressed to complete lack of coordination on the left side of my body only. I had no strange sensations on the right side whatsoever. I bent on the floor and laid my head on the floor to beg God for mercy and I was not able to stand after that. My entire left side lost feeling. My son saw me taken away in an ambulance, with the paramedics thinking I was having a stroke. I was admitted to the hospital and have been there until very late last night. 11 days.
I got a spinal tap for my 40th birthday. Not so bad. I must have had a good radiologist. MS is still a strong concern. Going to Duke for a MS consult next month. I have the best Neuro in town. Aside from the hospitalist trying to kill me while I sat in a hospital bed with no PT, alone, in the corner without any family within 700 miles, my Neuro has proven to be very intelligent and resourceful. With increased TN, my dose of Lyrica was increased. I had a very toxic reaction. I was literally paralized on the left side. I was diagnosed by the Neuro with a hemiplegic migraine, drug toxicity and related stress. Nothing to do with MS so far. Complete coincidence? I was still given a 5 day IV solumedrol drip. Lots of narcotics and associated problems.
The problem compounded when I began getting classic migraines in the hospital. I was given Imitrix. CONTRAINDICATED IN HEMIPLEGIC MIGRAINE PATIENTS. Problems compounded again. The idiot hospitalist couldn't figure out what was wrong, so said there was nothing wrong and told me I was psychotic. In the hallway. In addition to telling me that my HIV test came back negative. THANKS for telling everyone on the hospital floor I had been tested for HIV,. Thought there were laws about that. HIPPPA??????? I am on neurontin, baclofin, valium. I get the MS consult in about 5 weeks at DUKE. In the meantime, I am home with a wheelchair. A walker. A 3-in-1 bedside commode. Thank God for my Neuro. He's extremely distressed at my hospital treatment and I believe the hospitalist may be in fear of a lawsuit because since I convinced her I was not psychotic, she has turned around completely. I, on the other hand, have turned for the worse. Cannot function. Using much assistance. In home-health care and a daughter who has dropped everything to fly here for a week to help with her brother and her mother.
Frustrated. Sad. Angry. But, glad to have you all....... not the best birthday I have ever had. But I won't give in. All hospital records say MS exaserbation. Referral to Duke for further treatment. Sounds like the beginning of a mess, but spinal tap came out clear. For everything. Oligoclonoal bands, proteins, HIV, Lyme Disease, Lupus...... They say it may be early stage but that this hospitalization has nothing to do with MS. Thoughts????
Pamela
Firstly, many thanks for the 40th birthday well-wishes. Unfortunately, I was admitted to the local hospital on that Friday, the day before the BIG CELEBRATION. I began with pain behind my left eye which was severe, to say the least and facial swelling, on the left only. That progressed to complete lack of coordination on the left side of my body only. I had no strange sensations on the right side whatsoever. I bent on the floor and laid my head on the floor to beg God for mercy and I was not able to stand after that. My entire left side lost feeling. My son saw me taken away in an ambulance, with the paramedics thinking I was having a stroke. I was admitted to the hospital and have been there until very late last night. 11 days.
I got a spinal tap for my 40th birthday. Not so bad. I must have had a good radiologist. MS is still a strong concern. Going to Duke for a MS consult next month. I have the best Neuro in town. Aside from the hospitalist trying to kill me while I sat in a hospital bed with no PT, alone, in the corner without any family within 700 miles, my Neuro has proven to be very intelligent and resourceful. With increased TN, my dose of Lyrica was increased. I had a very toxic reaction. I was literally paralized on the left side. I was diagnosed by the Neuro with a hemiplegic migraine, drug toxicity and related stress. Nothing to do with MS so far. Complete coincidence? I was still given a 5 day IV solumedrol drip. Lots of narcotics and associated problems.
The problem compounded when I began getting classic migraines in the hospital. I was given Imitrix. CONTRAINDICATED IN HEMIPLEGIC MIGRAINE PATIENTS. Problems compounded again. The idiot hospitalist couldn't figure out what was wrong, so said there was nothing wrong and told me I was psychotic. In the hallway. In addition to telling me that my HIV test came back negative. THANKS for telling everyone on the hospital floor I had been tested for HIV,. Thought there were laws about that. HIPPPA??????? I am on neurontin, baclofin, valium. I get the MS consult in about 5 weeks at DUKE. In the meantime, I am home with a wheelchair. A walker. A 3-in-1 bedside commode. Thank God for my Neuro. He's extremely distressed at my hospital treatment and I believe the hospitalist may be in fear of a lawsuit because since I convinced her I was not psychotic, she has turned around completely. I, on the other hand, have turned for the worse. Cannot function. Using much assistance. In home-health care and a daughter who has dropped everything to fly here for a week to help with her brother and her mother.
Frustrated. Sad. Angry. But, glad to have you all....... not the best birthday I have ever had. But I won't give in. All hospital records say MS exaserbation. Referral to Duke for further treatment. Sounds like the beginning of a mess, but spinal tap came out clear. For everything. Oligoclonoal bands, proteins, HIV, Lyme Disease, Lupus...... They say it may be early stage but that this hospitalization has nothing to do with MS. Thoughts????
Pamela
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