Aa
What I Went Through to Get a Diagnosis
Hi, I'm Quix. This is my story of finally getting a diagnosis of MS. If you have been worked up for MS and have a diagnosis - Whatever that dianosis is - Would you post below and add your story? Thank you.
I am a 55 year old, white female. Seven years ago I was hit by intractable vertigo and, despite being treated by one of the world's foremost experts in vertigo, was forced to retire from being a pediatrician. I had very complicated problems in the inner ear on the left. But, eventually the problems spread to my right ear also. I was diagnosed with Autoimmune Inner Ear Disease. I was almost bedridden for a good portion of the first 4 years suffering from daily dizziness, nausea, poor balance with a lot of falls, and the worst fatigue I had ever sufferd. Remember I had trained in a huge county hospital and regularly spent 36 hours straight on my feet. The fatigue with vertigo is worse!!
Two and a half years ago one morning I was putting on my shoes and socks and realized I couldn't lift my R leg onto the other to put on my socks. I could barely lift it off the ground. I saw my internist who noted pathologically hyperactive reflexes on both knees and ankles, weakness of the R hip flexors and referred me to the neurologist I had seen before for migraines.
The neurologist who I already knew thought I was a crock, examined me and found mild extensor spasticity in my right leg - mainly at the hip. He sent me for an MRI w and w/o contrast of my brain and spine. Next visit he said the MRI's were completely normal. There was an UBO (Unidentified Bright Object) in the brain, but that this was inconsequential. He said it definitely wasn't MS and that I was too old for it anyway. He sent me home. Dx Vertigo and Spasticity- mild. Later I discovered in his notes that he thought I was faking the weakness.
During the next year I was dieting and lost 50 pounds slowly, but developed intermittent urinary incontinence. (losing weight is supposed to help that!) I also became much more fatigued than I was before, but wrote that off to being so deconditioned by spending all day in my recliner. Also, after years of living in the desert, became severely sensitive to even mild heat in my apartment. It made me weak and irrationally irritable. I was trying to get in short daily walks. One day it was a little warmer than usual and I couldn't make it home due to sudden weakness in both legs. I was terrified, and a neighbor had to help me home. Some months later I had a couple weeks of a weird sensation of warm water running down my right thigh. It would happen off and on all during the day. Each time I was sure I was being incontinent, but nothing was there!
I went back to the neuro a year after he had seen me before. He repeated the MRI and did the complete battery of blood tests for the causes of myelopathy (disease of brain and spinal cord) Again the MRI was normal and so were all the blood tests. He appeared annoyed by my return to see him. He called me and asked "if I WANTED a spinal tap." This was implying that I was faking the problems and just wanted to get medical procedures. Yeah, right...
Last summer (2006) suddenly one day I could not lift my right arm even to touch my throat. It was completely useless for about 36 hours, got a little better over the next week, but still felt weak and so fatigued. When I tried to use my right hand it felt foreign as if I was trying to use someone else's hand. It slowly improved over the next couple months. Even so I was left with residual weakness at the shoulder. Meanwhile I'm dragging my right leg, because it never got better and lurching about like a drunk sailor. So tired that I stopped leaving the house. My sister came to live with me, because I could not handle the house and errands. I became seriously depressed.
It was several months before I could get my mental strength and courage to research my own problems. My self-esteem was non-existent. By the end of 2006 I knew the only neurological disease that fit my symptoms of weakness, spasticity, parathesias, bladder problems, fatigue, heat intolerance, and the now two attacks of problems that came, stayed and then slowly resolved was MULTIPLE SCLEROSIS. All the other possible entities had been ruled out (this is critical in the daignosis of MS if the findings aren't perfectly classic) The problem was that my MRI was normal and I was too old at 54. You can suspect MS, but you cannot diagnose it without at least 1 brain or spine lesion on MRI.
I went to the MS Society website and looked for MS specialists in my area. I found one, made an appointment and my GP was very agreeable to making a referral. The new neurologist was wonderful! Intense, smart and thorough. In retrospect he made the diagnosis of MS on that first visit. He stated that calling the spot on my MRI a UBO was laughable. It was classic for an MS plaque (well-circumscribed, oval, perpendicular to the ventricles ). He was also stunned that my other neuro had not pushed hard for a spinal tap. That is the next step when the MRI is not diagnostic. He prescribed Provigil for the fatigue (miracle drug for me) and repeated another MRI of brain and spine. He also ordered the spinal tap which I had under fluoroscopy guidance. It was absolutely painless and without complications. Those MRI's didn't show any definite new lesions, but he was very suspicious of two little areas on my cervical spine.
The tap was positive for an elevated IgG index and I had only one (of course) oligoclonal band. They like to see 2 or more. The cell count was lost!
Based on a physical exam which showed a huge amount of existing spinal cord disease, a single plaque on my brain, the normal blood work up for myelopathy, and suggestive findings on the spinal tap he made the diagnosis of MS. He said it wasn't a "slam-dunk" diagnosis, but he was at least 90% sure. He, and many opther experts in the field, feel that for many people the MRI machines are just not sensitive enough. They improve every year or two. His concern was than in just 2 years, I was already very disabled. I've had intensive physical therapy and still required a brace on my R leg and I need to use a cane. The disease was/is progressing fast. He put me in the category of Relapsing Remitting only because if I had a progressive type I should have many, many more brain lesions, but my disease is acting more like the rarest type called Progressive Relapsing.
In my reading late onset MS is often marked by faster progression of disability and more by motor dysfunction than by sensory problems. This fits with what I have had.
So this was my short course to diagnosis. Not nearly as horrific as it has been for many of you, but it has been devastating to me. The scary loss of function, the not knowing why, and the anger at being dismissed and discarded by my doctor. Ya know, the vertigo had been quite enough....
I'm now two months into therapy with Avonex. I'm through a new relapse (my fourth in the 30 months). A repeat MRI of my C-spine and T-spine with one of the newest generation of MRI machines which has a more powerful (3 Tesla) magnet showed half a dozen old spinal lesions which were missed by the previous older machines. I'm having constant electric shocks down my left leg when I flex my neck. Dozens of times a day. It's called L'Hermitte's Sign, and it is common in MS, but new to me. It is felt to indicate upper spine lesions that press on normal nerves when the neck is flexed.
So I, too, am a Stanger in a Strange Land. I hope that here on the forums I can learn from you and share some of my understanding of how things work from 23 years in medical practice.
Quix
I am a 55 year old, white female. Seven years ago I was hit by intractable vertigo and, despite being treated by one of the world's foremost experts in vertigo, was forced to retire from being a pediatrician. I had very complicated problems in the inner ear on the left. But, eventually the problems spread to my right ear also. I was diagnosed with Autoimmune Inner Ear Disease. I was almost bedridden for a good portion of the first 4 years suffering from daily dizziness, nausea, poor balance with a lot of falls, and the worst fatigue I had ever sufferd. Remember I had trained in a huge county hospital and regularly spent 36 hours straight on my feet. The fatigue with vertigo is worse!!
Two and a half years ago one morning I was putting on my shoes and socks and realized I couldn't lift my R leg onto the other to put on my socks. I could barely lift it off the ground. I saw my internist who noted pathologically hyperactive reflexes on both knees and ankles, weakness of the R hip flexors and referred me to the neurologist I had seen before for migraines.
The neurologist who I already knew thought I was a crock, examined me and found mild extensor spasticity in my right leg - mainly at the hip. He sent me for an MRI w and w/o contrast of my brain and spine. Next visit he said the MRI's were completely normal. There was an UBO (Unidentified Bright Object) in the brain, but that this was inconsequential. He said it definitely wasn't MS and that I was too old for it anyway. He sent me home. Dx Vertigo and Spasticity- mild. Later I discovered in his notes that he thought I was faking the weakness.
During the next year I was dieting and lost 50 pounds slowly, but developed intermittent urinary incontinence. (losing weight is supposed to help that!) I also became much more fatigued than I was before, but wrote that off to being so deconditioned by spending all day in my recliner. Also, after years of living in the desert, became severely sensitive to even mild heat in my apartment. It made me weak and irrationally irritable. I was trying to get in short daily walks. One day it was a little warmer than usual and I couldn't make it home due to sudden weakness in both legs. I was terrified, and a neighbor had to help me home. Some months later I had a couple weeks of a weird sensation of warm water running down my right thigh. It would happen off and on all during the day. Each time I was sure I was being incontinent, but nothing was there!
I went back to the neuro a year after he had seen me before. He repeated the MRI and did the complete battery of blood tests for the causes of myelopathy (disease of brain and spinal cord) Again the MRI was normal and so were all the blood tests. He appeared annoyed by my return to see him. He called me and asked "if I WANTED a spinal tap." This was implying that I was faking the problems and just wanted to get medical procedures. Yeah, right...
Last summer (2006) suddenly one day I could not lift my right arm even to touch my throat. It was completely useless for about 36 hours, got a little better over the next week, but still felt weak and so fatigued. When I tried to use my right hand it felt foreign as if I was trying to use someone else's hand. It slowly improved over the next couple months. Even so I was left with residual weakness at the shoulder. Meanwhile I'm dragging my right leg, because it never got better and lurching about like a drunk sailor. So tired that I stopped leaving the house. My sister came to live with me, because I could not handle the house and errands. I became seriously depressed.
It was several months before I could get my mental strength and courage to research my own problems. My self-esteem was non-existent. By the end of 2006 I knew the only neurological disease that fit my symptoms of weakness, spasticity, parathesias, bladder problems, fatigue, heat intolerance, and the now two attacks of problems that came, stayed and then slowly resolved was MULTIPLE SCLEROSIS. All the other possible entities had been ruled out (this is critical in the daignosis of MS if the findings aren't perfectly classic) The problem was that my MRI was normal and I was too old at 54. You can suspect MS, but you cannot diagnose it without at least 1 brain or spine lesion on MRI.
I went to the MS Society website and looked for MS specialists in my area. I found one, made an appointment and my GP was very agreeable to making a referral. The new neurologist was wonderful! Intense, smart and thorough. In retrospect he made the diagnosis of MS on that first visit. He stated that calling the spot on my MRI a UBO was laughable. It was classic for an MS plaque (well-circumscribed, oval, perpendicular to the ventricles ). He was also stunned that my other neuro had not pushed hard for a spinal tap. That is the next step when the MRI is not diagnostic. He prescribed Provigil for the fatigue (miracle drug for me) and repeated another MRI of brain and spine. He also ordered the spinal tap which I had under fluoroscopy guidance. It was absolutely painless and without complications. Those MRI's didn't show any definite new lesions, but he was very suspicious of two little areas on my cervical spine.
The tap was positive for an elevated IgG index and I had only one (of course) oligoclonal band. They like to see 2 or more. The cell count was lost!
Based on a physical exam which showed a huge amount of existing spinal cord disease, a single plaque on my brain, the normal blood work up for myelopathy, and suggestive findings on the spinal tap he made the diagnosis of MS. He said it wasn't a "slam-dunk" diagnosis, but he was at least 90% sure. He, and many opther experts in the field, feel that for many people the MRI machines are just not sensitive enough. They improve every year or two. His concern was than in just 2 years, I was already very disabled. I've had intensive physical therapy and still required a brace on my R leg and I need to use a cane. The disease was/is progressing fast. He put me in the category of Relapsing Remitting only because if I had a progressive type I should have many, many more brain lesions, but my disease is acting more like the rarest type called Progressive Relapsing.
In my reading late onset MS is often marked by faster progression of disability and more by motor dysfunction than by sensory problems. This fits with what I have had.
So this was my short course to diagnosis. Not nearly as horrific as it has been for many of you, but it has been devastating to me. The scary loss of function, the not knowing why, and the anger at being dismissed and discarded by my doctor. Ya know, the vertigo had been quite enough....
I'm now two months into therapy with Avonex. I'm through a new relapse (my fourth in the 30 months). A repeat MRI of my C-spine and T-spine with one of the newest generation of MRI machines which has a more powerful (3 Tesla) magnet showed half a dozen old spinal lesions which were missed by the previous older machines. I'm having constant electric shocks down my left leg when I flex my neck. Dozens of times a day. It's called L'Hermitte's Sign, and it is common in MS, but new to me. It is felt to indicate upper spine lesions that press on normal nerves when the neck is flexed.
So I, too, am a Stanger in a Strange Land. I hope that here on the forums I can learn from you and share some of my understanding of how things work from 23 years in medical practice.
Quix
Hi my name is Soli and im 19 years old, around 2013 i was having a lot of health problems diagnosed with sinus tachycardia having seizures blacking out. And then one day i woke up and the left side of my face was numb and i ignored it thought it would go away and it didnt for about a week so i went to the local ER and the said it almost sounds like a stroke but your only 16 so it cant be.. so i got an mri done and it showed little spots on my brain. They said im sorry but it looks like you have ms.. i was terrified we went to a neurologist and they did many tests and said it was just migraines. So now at the begining of December 2015 i noticed that my right hand fingers were a little numb i ignored it thinking it was a pinched nerve and over 4 days it spread to my whole hand. Then i woke up the next day and my whole right side of my body was numb. I immediately got out of bed and went to the ER they did an MRI and it showed that since 2013 i have 6 new brain lesions and theyve grown. They said im sorry but it looks like you have MS. So i went and made an appointment with my old neurologist and he ran a bunch of test and i recently got a spinal tap done they said there were no obvious signs of MS but we forgot to draw blood when we did the spinal tap so they just got the blood results back yesterday and they told me i do have MS. And my numbness has left my right leg and progressed in my right hand and is mak8ing my coordination bad in my right hand to where its hard to use it.
My dad had MS - transverse myelitis, to be exact. I'm guilty of not knowing much about it beyond it was chronic, and he had relapsed multiple times in my childhood. Fairly aggressive the last time - intense pain in his hip, no feeling in one leg but able to move it, while the other he could feel but could not move, and oftentimes it was quite swollen. Incontinence. Brain fog. Fatigue. Limited to a wheelchair. Pins and needles all over. I can remember him being a part of clinical trials and whatnot to discover more about ME as he had a "rare, 1 in a million two times over" form. He had been diagnosed when I was 2 - so that'd be 1995 - and passed away in 2009 when I was 15, and in that time I had very little memory of him walking or being well - by the time he died all of his organs were beginning to fail, and was coping with alcohol - and I'm fairly certain the experience gave me an irrational fear of having it myself some day. And because of that I've never really researched it, kind of like "out of sight out of mind"
(Is it irrational though?? MS is something I wouldn't wish upon anyone! And I always remember hearing my dad say it isnt hereditary, but that it's also a disorder that scientists aren't 100% on cause and etc.)
So enter today. I'm 24, trying to find an illusive hyperactive thyroid problem, diagnosed with fibromyalgia (although I don't believe that's really it.) as well as Schueurmann's, potentially scoliosis.
Schueurmann's is lordosis in a c shape that occurs during puberty, where the vertebrae fuse into little wedges on the sides, causing limited mobility and humpback. Thankfully mine's not 'surgery necessary' but it is painful and noticeable, and at 17-18 I had fractured the area. But what scares me is nobody seems to take certain symptoms seriously when I tell them, because I'm 24 and visibly I look healthy. I had to fight and see 3 doctors just to get this far. That irrational thought bubble of 'it's MS' constantly pops up and I fight it because it's uncommon, and I know it's irrational, because many MS symptoms are present for other conditions. And the odds would just be crazy.
But they overlap. I get brainfog, I've complained of numbness and tingling/stinging ever since this 'thyroid' problem presented 6 yrs ago, after I had my first child. My legs get weak. I can feel the 'hug' my dad described (and grandma looooves to remind me that my spine curves like his). I swell. My joints and bones ache, deep like it's the marrow. I get occasional small spasms that are generally painless. Some days i feel wonderful - borderline jittery but without pain - where as others i literally call them my "Grandma days" because I walk around like an old lady and i'm incredibly tired. And just recently it's like my tastebuds are off. My vision has gone down but I worked 3rd shift on a computer so I'm not surprised. I've been showing signs of Afib.
I've had a slew of tests - bloodwork is nearly normal. t4 is low, slightly high WBC, but otherwise normal. Normal bone density. No signs of an autoimmune. I just did an uptake and my thyroid looks totally normal. So I'm on my way to an endocrine in December but I've got two kids and I just need that little 'MS' voice to SHUT UP, because stress makes everything seem worse, and I feel a bit like i have a tinfoil hat about allof it ;p But after reading this post and others in here I just felt like I'd get a good answer without judgement that I'd feel solid about.
So, if anyone could alleviate my fears, or point me in a direction, i'd be beyond grateful. :3
(Is it irrational though?? MS is something I wouldn't wish upon anyone! And I always remember hearing my dad say it isnt hereditary, but that it's also a disorder that scientists aren't 100% on cause and etc.)
So enter today. I'm 24, trying to find an illusive hyperactive thyroid problem, diagnosed with fibromyalgia (although I don't believe that's really it.) as well as Schueurmann's, potentially scoliosis.
Schueurmann's is lordosis in a c shape that occurs during puberty, where the vertebrae fuse into little wedges on the sides, causing limited mobility and humpback. Thankfully mine's not 'surgery necessary' but it is painful and noticeable, and at 17-18 I had fractured the area. But what scares me is nobody seems to take certain symptoms seriously when I tell them, because I'm 24 and visibly I look healthy. I had to fight and see 3 doctors just to get this far. That irrational thought bubble of 'it's MS' constantly pops up and I fight it because it's uncommon, and I know it's irrational, because many MS symptoms are present for other conditions. And the odds would just be crazy.
But they overlap. I get brainfog, I've complained of numbness and tingling/stinging ever since this 'thyroid' problem presented 6 yrs ago, after I had my first child. My legs get weak. I can feel the 'hug' my dad described (and grandma looooves to remind me that my spine curves like his). I swell. My joints and bones ache, deep like it's the marrow. I get occasional small spasms that are generally painless. Some days i feel wonderful - borderline jittery but without pain - where as others i literally call them my "Grandma days" because I walk around like an old lady and i'm incredibly tired. And just recently it's like my tastebuds are off. My vision has gone down but I worked 3rd shift on a computer so I'm not surprised. I've been showing signs of Afib.
I've had a slew of tests - bloodwork is nearly normal. t4 is low, slightly high WBC, but otherwise normal. Normal bone density. No signs of an autoimmune. I just did an uptake and my thyroid looks totally normal. So I'm on my way to an endocrine in December but I've got two kids and I just need that little 'MS' voice to SHUT UP, because stress makes everything seem worse, and I feel a bit like i have a tinfoil hat about allof it ;p But after reading this post and others in here I just felt like I'd get a good answer without judgement that I'd feel solid about.
So, if anyone could alleviate my fears, or point me in a direction, i'd be beyond grateful. :3
WOW, I have been through all of this for the past 15 years. HUGS. I am an RN Case Manager out of work since 6/9 because I just can't do it any more. The fatigue, the spasms, the vertigo, the nausea, the brain fog.
I am also the parent of two total care disabled children. I assisted my son to transfer from a wc, felt a horrible pop in my back, found 2 old pars fractures, L5, subluxations, herniation and Spondylosis and Spondylolethesis and told that is not causing this, just makes me more uncomfortable. I have had what they tell me is a Syrinx T7-10 found in 2001 when only by left big toe was numb, which may or may not be a gigantic MS lesion. And now have a lesion Corona Radiata that wasn't there in 2006.
But still am told, none of this is causing my symptoms. And I have CLASSIC Coronia Radiata lesion sx, right sided lesions, left sided weakness, numbness etc.Now starting to have some on the right and wonder what small left sided frontal lesion has not yet been found. I was dx with "Probable MS" in 2006 but declined treatment with Avonex because they did not have a definitive diagnosis and I was told it was a "shot in the dark" to see if I would get better. As a third year nursing student and mother of a newly diagnosed toddler with a Fragile X Syndrome (I also have to worry about Fragile X Tremor Ataxia Syndrome..and am told too young, too female for that) but I know it happens since its such a rare disorder we all know each other and whose parents have been effected and some are women under 60....just not statistically relevant enough to be believed women.
I feel for all you have been through. The frusrtation, the worry, the total lack of ability to plan for your future, but mostly for not being believed as both a patient and medical professional yourself. ((Unlimited hugs))
I am also the parent of two total care disabled children. I assisted my son to transfer from a wc, felt a horrible pop in my back, found 2 old pars fractures, L5, subluxations, herniation and Spondylosis and Spondylolethesis and told that is not causing this, just makes me more uncomfortable. I have had what they tell me is a Syrinx T7-10 found in 2001 when only by left big toe was numb, which may or may not be a gigantic MS lesion. And now have a lesion Corona Radiata that wasn't there in 2006.
But still am told, none of this is causing my symptoms. And I have CLASSIC Coronia Radiata lesion sx, right sided lesions, left sided weakness, numbness etc.Now starting to have some on the right and wonder what small left sided frontal lesion has not yet been found. I was dx with "Probable MS" in 2006 but declined treatment with Avonex because they did not have a definitive diagnosis and I was told it was a "shot in the dark" to see if I would get better. As a third year nursing student and mother of a newly diagnosed toddler with a Fragile X Syndrome (I also have to worry about Fragile X Tremor Ataxia Syndrome..and am told too young, too female for that) but I know it happens since its such a rare disorder we all know each other and whose parents have been effected and some are women under 60....just not statistically relevant enough to be believed women.
I feel for all you have been through. The frusrtation, the worry, the total lack of ability to plan for your future, but mostly for not being believed as both a patient and medical professional yourself. ((Unlimited hugs))
Hi Quix,
I hope you are still out there waiting for responses and doing well. I am 54 and also got the same "you are too old" speech. I have many white spots on my brain MRI but none active with contrast and was told that could be from a history of smoking. I had 2 bands on the spinal tap for MS but I'm told they need 5 for a diagnosis, but you said they like to see 2, which I have. My symptoms started noticeably about a year and a half ago although looking back it could have been longer with some chalking up some to old age, urinary incontinence, fatigue, insomnia, depression, memory loss, etc. The noticeable symptom I now have is an uncontrollable tremor in my left leg. It starts around the ankle which gets tensed up and starts the tremor. My test with the electrodes was off the chart. My MRI of the spine was normal but I did not have the cervical area done, only the thoracic. I'm now being sent to a MS specialists hours from home. You mentioned ear problems as well. I have tinnitus now that never goes away. It drives me insane. When I first noticed it I went all around my house and made sure everything was turned off and it has never gone away. I'm not even sure when it started, if I just never noticed because I was used to it or what.
Anyway, some of the things you mentioned hit home with me and I hope you are doing well.
Shari
I hope you are still out there waiting for responses and doing well. I am 54 and also got the same "you are too old" speech. I have many white spots on my brain MRI but none active with contrast and was told that could be from a history of smoking. I had 2 bands on the spinal tap for MS but I'm told they need 5 for a diagnosis, but you said they like to see 2, which I have. My symptoms started noticeably about a year and a half ago although looking back it could have been longer with some chalking up some to old age, urinary incontinence, fatigue, insomnia, depression, memory loss, etc. The noticeable symptom I now have is an uncontrollable tremor in my left leg. It starts around the ankle which gets tensed up and starts the tremor. My test with the electrodes was off the chart. My MRI of the spine was normal but I did not have the cervical area done, only the thoracic. I'm now being sent to a MS specialists hours from home. You mentioned ear problems as well. I have tinnitus now that never goes away. It drives me insane. When I first noticed it I went all around my house and made sure everything was turned off and it has never gone away. I'm not even sure when it started, if I just never noticed because I was used to it or what.
Anyway, some of the things you mentioned hit home with me and I hope you are doing well.
Shari
I am so sorry you were diagnosed with MS. This is really hard. The good news is you can go on one of the medications to slow the progression. Each case of MS is different. No one can tell you what will happen. Many people with MS these days do not progress to a wheelchair because of the medications. I have had MS since I was 2 years old. I am 52 now. I still walk and swim and ride horses. I walk more slowly than I used to. Most of my attacks happened when I was a small child. Now I just have some slow progression.
When do you see the neurologist. Is the neurologist a MS Specialist if not you might want a MS Specialist. Your symptoms might come and go. There is inflammation in MS. When you have inflammation you have symptoms. When the inflammation goes away so do the symptoms.
You might want to contact the National MS Society. They have a lot of information which is free about MS and living with MS.
Alex
When do you see the neurologist. Is the neurologist a MS Specialist if not you might want a MS Specialist. Your symptoms might come and go. There is inflammation in MS. When you have inflammation you have symptoms. When the inflammation goes away so do the symptoms.
You might want to contact the National MS Society. They have a lot of information which is free about MS and living with MS.
Alex
I feel like your story is mine several years ago I started having pain in my feet and arms weird shocking going up and down my legs finally went to a Neruo and he said early stages of Fibromagy so I went in my life thinking so for 7 years when fatigue set in I would drag my self to work and was always dizzy pain got worse went to my Dr she sent me to another Nero were I had a EMG done and showed abnormal my sensory and motor nerves were being stripped as he also said some could be do to diebetes I'm a type 2 for 12 years although I have not had a bad a1c in 11 years I was only taking 1 metformin a day now not on any meds My Dr disagreed so he said something else was going on like 2 things well he left the country and so off to another Nero test and test he put me on Lyrica has done nothing but make me fat and tired I have resently started falling and my shoulders and legs are getting so week I tremor I keep asking what is wrong with me he says I'm working on it I have been off work for 2 years sit in my chair got braces for my legs which hurt me so bad I can't even dress my self some days I'm about to go to Mayo I want a mri of my brain so frustrated
Hi 12
Welcome to the group. This is a pretty old thread, but Quix is a great source of timeless information. SHe doesn't visit much anymore and I didn't want you to think she was ignoring you :-)
Do you have any MRI in LP reulsts in your mix?
Kyle
Welcome to the group. This is a pretty old thread, but Quix is a great source of timeless information. SHe doesn't visit much anymore and I didn't want you to think she was ignoring you :-)
Do you have any MRI in LP reulsts in your mix?
Kyle
Quix,
Thank you so much for sharing your elaborate story. It was very interesting and helpful. I am at my 26th month of NO DIAGNOSIS! IM confident you identify with my long term frustration. I usually start each day positively, although some days are daunting just to get up and not feel trapped!
It started out 2 months after a right shoulder partial replacement (Arm not socket) when suddenly one evening left foot drop and paralysis in sensation just developed BOOM! The embarrassing limp in public, symptoms which reflected sciatica at first....but doesn't fit all the criteria. As it quickly developed into varying degrees of paralysis throughout left lower back, hips, and down to my toes. Left foot drop, and the pain greatly concerned me. Ive had 5 EMG's, multiple lab work, NO diabetes, NO cholesterol probs, NO results pointing to a DIAGNOSIS!! SO now, 26 months later Ive been seeing a new neurologist at the University of Washington Medicine department for fresh eyes, perspective, and ideas on what to do and where to go from here?? Once again, thank you Quix.
Thank you so much for sharing your elaborate story. It was very interesting and helpful. I am at my 26th month of NO DIAGNOSIS! IM confident you identify with my long term frustration. I usually start each day positively, although some days are daunting just to get up and not feel trapped!
It started out 2 months after a right shoulder partial replacement (Arm not socket) when suddenly one evening left foot drop and paralysis in sensation just developed BOOM! The embarrassing limp in public, symptoms which reflected sciatica at first....but doesn't fit all the criteria. As it quickly developed into varying degrees of paralysis throughout left lower back, hips, and down to my toes. Left foot drop, and the pain greatly concerned me. Ive had 5 EMG's, multiple lab work, NO diabetes, NO cholesterol probs, NO results pointing to a DIAGNOSIS!! SO now, 26 months later Ive been seeing a new neurologist at the University of Washington Medicine department for fresh eyes, perspective, and ideas on what to do and where to go from here?? Once again, thank you Quix.
Are you by any chance an ex-pat or affiliated with the British military? I ask because it may be that you have more expertise to avail of if you arrange an appointment back in the UK through the NHS. (Just taking a punt based on your perfect English and the fact that all the people I know who've lived in Cyprus were British). Just throwing that out there.
I also know little about Cypriot health care Which partition are you in? Does that effect what's available to you?
I also know little about Cypriot health care Which partition are you in? Does that effect what's available to you?
COMMUNITY LEADER
Hi and welcome,
You've actually posted on the end of a really old post (2007), many of the original posters are no longer active in the community.....
I know nothing about the health system in Cyprus but I would recommend you seriously consider getting a new GP........it's totally unreasonable for someone your age, to not be given symptoms relief and simply told your going to have to live with it! MS isn't the only condition that these symptoms are connected with, but i do think you probably need to see some one that specialises in vestibular dysfunctions for help...
cheers.........JJ
You've actually posted on the end of a really old post (2007), many of the original posters are no longer active in the community.....
I know nothing about the health system in Cyprus but I would recommend you seriously consider getting a new GP........it's totally unreasonable for someone your age, to not be given symptoms relief and simply told your going to have to live with it! MS isn't the only condition that these symptoms are connected with, but i do think you probably need to see some one that specialises in vestibular dysfunctions for help...
cheers.........JJ
Four years ago I woke up to a spinning sensation, fatigue, nausea
Then as time went on pins and needles in right shoulder blade followed by tingling. Pain pulling sensation in neck, stabbing pain in ears, tremor in hands, water infections, joint pain especially in knees and pain radiating up back.
Fatigue and vertigo are by far the worst symptom. The vertigo is there 95 % of the time and has completely taken over my life.
Ear problems have been ruled out by ENT.
2 brain scans without contrast by 2 different neurologists both normal. My gp is now saying it's something I am going to have to live with as a lot of tests have not showed anything up.
Where do I go from here? X
Then as time went on pins and needles in right shoulder blade followed by tingling. Pain pulling sensation in neck, stabbing pain in ears, tremor in hands, water infections, joint pain especially in knees and pain radiating up back.
Fatigue and vertigo are by far the worst symptom. The vertigo is there 95 % of the time and has completely taken over my life.
Ear problems have been ruled out by ENT.
2 brain scans without contrast by 2 different neurologists both normal. My gp is now saying it's something I am going to have to live with as a lot of tests have not showed anything up.
Where do I go from here? X
I am so glad to have come across your post.
My father is 67 years old. He and my mother are missionaries in Mexico, and have been there for the past 3 years. They came and visited with us over this past summer. What I saw in my father, I was not prepared for. He would have "episodes" of shaking hands and knees, slight double vision, slurred speech, awkward gait, drop foot, numbness and tingling in his hands and feet, and total loss of balance. Almost over night, he has become frail and has turned to using a cane. My father said, this has been going on "for some time" and " it's probably Agent Orange" He served 4 years in Vietnam 65-69, and has worked off and on during my teen-aged years, in nuclear plants.. My mother says " he's just dehydrated" ( God I love her ). I did some research and came up with either Parkinson's or MS. Dad seemed to think that after hearing the symptoms of MS, he had a diagnosis.They left to head back to Colorado after making them promise me they would see a doctor before heading back to Mexico. He went to the VA hospital, where they ruled out Agent Orange. They ran an MRI an CT Scans, both came back neg for MS and Parkinson's. Blood work was run for everything under the sun, and the only thing they found, was that he had Wilson's disease. No spinal tap was done to my knowledge Still, in no way does this explain his symptoms. They gave him a 'script for the Wilson's, but left everything open ended. He just recently came back tot he states, stopped the medication so the VA doc's and neurologist could see the full set of symptoms. ( meds they gave him for Wilson's didn't help, and messed up his thought process ). They still have no answers, and the doctors told him, that it was basically all in his head. He caught wind of a " new age" doctor. This man packed his body with ice packs which seems to be helping somewhat. But again, still no real answers.
I was wondering of you may have a little insight to this, or if you could pass this information on to someone who might have a clue in which way to point me.
If you have the time, would you please send any helpful info
Thank you so much for any light you can shed,
SJ
My father is 67 years old. He and my mother are missionaries in Mexico, and have been there for the past 3 years. They came and visited with us over this past summer. What I saw in my father, I was not prepared for. He would have "episodes" of shaking hands and knees, slight double vision, slurred speech, awkward gait, drop foot, numbness and tingling in his hands and feet, and total loss of balance. Almost over night, he has become frail and has turned to using a cane. My father said, this has been going on "for some time" and " it's probably Agent Orange" He served 4 years in Vietnam 65-69, and has worked off and on during my teen-aged years, in nuclear plants.. My mother says " he's just dehydrated" ( God I love her ). I did some research and came up with either Parkinson's or MS. Dad seemed to think that after hearing the symptoms of MS, he had a diagnosis.They left to head back to Colorado after making them promise me they would see a doctor before heading back to Mexico. He went to the VA hospital, where they ruled out Agent Orange. They ran an MRI an CT Scans, both came back neg for MS and Parkinson's. Blood work was run for everything under the sun, and the only thing they found, was that he had Wilson's disease. No spinal tap was done to my knowledge Still, in no way does this explain his symptoms. They gave him a 'script for the Wilson's, but left everything open ended. He just recently came back tot he states, stopped the medication so the VA doc's and neurologist could see the full set of symptoms. ( meds they gave him for Wilson's didn't help, and messed up his thought process ). They still have no answers, and the doctors told him, that it was basically all in his head. He caught wind of a " new age" doctor. This man packed his body with ice packs which seems to be helping somewhat. But again, still no real answers.
I was wondering of you may have a little insight to this, or if you could pass this information on to someone who might have a clue in which way to point me.
If you have the time, would you please send any helpful info
Thank you so much for any light you can shed,
SJ
I'm 44 and about 5 years ago my left shoulder locked up and my arm started to loose strength , around the same time I had an extreme ear ache the arm sort of got better but returned around the same time the next year and the next meanwhile my ear infection got so bad last year I finally was diagnosed with a cholesteatoma and had surgery to remove it, I was also tested for lupus as my arm lost strength again my shoulder has locked up my heart seems to play up and I feel so tired I have realised this seems to happen every year at the same time in the warmer months my GP has orderd more ANA ,ANCA and a whole range of other test , I'm tired of the same thing every year and I get worse with every relapse that what I call it cause it's the same symptoms over and over every year. All I want is an answer wheat her it is good or bad cause I'm tired of no one believing me with how I feel
Hello..I hope you are feeling well and your 3D life :) is good. I am posting today because I had another 'episode' yesterday and I think maybe I'm losing my mind :) It all started for me back in 2001 and I just turned 52 this month. I started out with extreme dizziness for lack of a better term...I felt like I was falling off of a cliff. Back in 2001, they did ear test..all normal. They did MRI, normal. As time went on the episodes would stop for long periods then they would come back with a vengeance. In 2011 I was putting groceries away when I felt like I was being 'pulled' sideways across the room. I was 'dizzy' and stumbling uncontrollably around the room until I stopped dead in front of the sink where my vision went grey, like looking through a grey colored sheer curtain. I heard the words in my head, "I going down" and I did just that. I don't know how long I was out but when I woke up one of my dogs was laying by my head and the other was racing around me whining and barking. I went to the hospital and the MRI wasn't clear. They did a second one and said, "normal". I had tingling like a 'cap' on the back/top of my head, in the tip of my nose, inside my mouth and up the left side of my face that went on for days after the 'episode'.
It was a long time but it happened again one time walking out of my moms apartment. Then a hallucination at the grocery store that scared the daylights out of me. Another time I was washing my old truck. I can't tolerate heat at all so maybe that had something to do with it..I don't know. It's severe dizziness/vertigo..not sure what to call it. The last time it happened before yesterdays 'episode' was about six months ago. I was messing with my albums when the dizziness started and I kept saying (or thinking) "no" repeatedly. The next thing I know, I was stumbling across the house like a drunk. It was the same feeling you had when we were kids and we'd lock arms and swing each other around only, I couldn't stop it and no one was here. I fell over two stereo speakers I had sitting in the middle of the floor because I was in the process of rearranging things. I landed hard, cut my leg, just laid there and burst into tears.
Yesterday I was sitting at my desk going over bills. My eyes would feel like they were zooming around and I had to force them back into focus. Then the dizziness/vertigo feeling came over me and I knew there was no stopping it. The strange thing is, I always feel like I have to stand up if I'm not already and I can't stop that either. I stumbled about 6 feet into the loveseat, bounced off of it and around the front into the center of the room where I stopped. It felt as if I was still being pulled to the left but also like my left side wasn't connected to me somehow. I can't explain it right...
I have had the feeling of a sock on when there was none. I have felt that feeling of liquid running down my leg and looked to see nothing there..thankfully :) I have been standing up while holding a coffee cup and not realize I dropped it until I saw it just before it hit the floor..on my moms brand new carpet...I felt horrible!
I have, over the last year, lost muscle in my left thigh. There is a huge 'dent' and it's now about half the size of my right. I have been diagnosed with SCLE, Fibromyalgia, Raynauds, and Ocular Migraines.
I have not told my doctor about the 'episode' yesterday due to it being a holiday weekend. I think he's starting to think I'm crazy like other doctors in my past. It makes me feel very sad because I am pretty sure (lol) I'm not nuts...but even I am starting to wonder at this point. They have ruled out seizures and lesions or bleeds on and/or in my brain. I did tell my doctor (PA) about the muscle atrophy in my left thigh but he has never looked at it..it's really got me concerned because it's not getting better and my left leg is now a lot smaller than my right.
I don't have much..any lol..money and I live on SSDI so, I have medicare and medicaid. I don't know if all of this is just in my head or not but, every time I start doing a search to try and figure it all out, MS comes up. I know MS can mimic a multitude of other things so I'm not saying I have MS. I'm just wondering if what I have described sounds vaguely familiar to you or anyone. Could I just be dehydrated? I have been told that too... Seeing a Nero, let alone a good one is probably wishful thinking. I just feel lost and don't know who or where to turn anymore and I don't know what's wrong with me.... I just know the 'episodes' are very scary and 98% of the time I am alone so no one is there to see it or to just tell me it's all gonna be okay...
I better stop now.. I hope with all of my heart that you and everyone else on here who has shared their story are doing well. My heart goes out to each and every one of you. Take care..
It was a long time but it happened again one time walking out of my moms apartment. Then a hallucination at the grocery store that scared the daylights out of me. Another time I was washing my old truck. I can't tolerate heat at all so maybe that had something to do with it..I don't know. It's severe dizziness/vertigo..not sure what to call it. The last time it happened before yesterdays 'episode' was about six months ago. I was messing with my albums when the dizziness started and I kept saying (or thinking) "no" repeatedly. The next thing I know, I was stumbling across the house like a drunk. It was the same feeling you had when we were kids and we'd lock arms and swing each other around only, I couldn't stop it and no one was here. I fell over two stereo speakers I had sitting in the middle of the floor because I was in the process of rearranging things. I landed hard, cut my leg, just laid there and burst into tears.
Yesterday I was sitting at my desk going over bills. My eyes would feel like they were zooming around and I had to force them back into focus. Then the dizziness/vertigo feeling came over me and I knew there was no stopping it. The strange thing is, I always feel like I have to stand up if I'm not already and I can't stop that either. I stumbled about 6 feet into the loveseat, bounced off of it and around the front into the center of the room where I stopped. It felt as if I was still being pulled to the left but also like my left side wasn't connected to me somehow. I can't explain it right...
I have had the feeling of a sock on when there was none. I have felt that feeling of liquid running down my leg and looked to see nothing there..thankfully :) I have been standing up while holding a coffee cup and not realize I dropped it until I saw it just before it hit the floor..on my moms brand new carpet...I felt horrible!
I have, over the last year, lost muscle in my left thigh. There is a huge 'dent' and it's now about half the size of my right. I have been diagnosed with SCLE, Fibromyalgia, Raynauds, and Ocular Migraines.
I have not told my doctor about the 'episode' yesterday due to it being a holiday weekend. I think he's starting to think I'm crazy like other doctors in my past. It makes me feel very sad because I am pretty sure (lol) I'm not nuts...but even I am starting to wonder at this point. They have ruled out seizures and lesions or bleeds on and/or in my brain. I did tell my doctor (PA) about the muscle atrophy in my left thigh but he has never looked at it..it's really got me concerned because it's not getting better and my left leg is now a lot smaller than my right.
I don't have much..any lol..money and I live on SSDI so, I have medicare and medicaid. I don't know if all of this is just in my head or not but, every time I start doing a search to try and figure it all out, MS comes up. I know MS can mimic a multitude of other things so I'm not saying I have MS. I'm just wondering if what I have described sounds vaguely familiar to you or anyone. Could I just be dehydrated? I have been told that too... Seeing a Nero, let alone a good one is probably wishful thinking. I just feel lost and don't know who or where to turn anymore and I don't know what's wrong with me.... I just know the 'episodes' are very scary and 98% of the time I am alone so no one is there to see it or to just tell me it's all gonna be okay...
I better stop now.. I hope with all of my heart that you and everyone else on here who has shared their story are doing well. My heart goes out to each and every one of you. Take care..
Hello my name is James and I am a 28 yo male.
I ve recently spent 5 days in the hospital, in Edmonton and have had an MRI, and spinal tap. All to which have come back negative. But I still continue to have numbness, weakness in arms, and especially in my left leg. I get dizzy, light headed, and have blacked out once for about 10 seconds. I get these horrible pains that feel like I stuck my finger in a light socket or wall outlet. They at times bring me to my knees and last for 30-45 seconds.
I need some guidance as I m starting to become a bit depressed not knowing what is wrong.
I also have experienced some incontinence
I ve recently spent 5 days in the hospital, in Edmonton and have had an MRI, and spinal tap. All to which have come back negative. But I still continue to have numbness, weakness in arms, and especially in my left leg. I get dizzy, light headed, and have blacked out once for about 10 seconds. I get these horrible pains that feel like I stuck my finger in a light socket or wall outlet. They at times bring me to my knees and last for 30-45 seconds.
I need some guidance as I m starting to become a bit depressed not knowing what is wrong.
I also have experienced some incontinence
You and Quix have it and so do I. I was originally diagnosed in 1993 and couldn't seem to get any help to get on Medicare back then and still had to work full time in secretarial jobs after I had graduated late from college with a BA in Psychology and Art. I wanted to become a doctor but couldn't handle the exhaustion spot of working on a Masters Degree and then a Doctorate! Anyway, later on my husband who was my boyfriend when we were teenagers, an I got back together he asked me to marry him and I warned him that I had MS and I wanted a horse again and he said it was okay and we got married in 1998. Then he suggested that I get another MRI, in 2000, because I sure still needed to know (myself)and make sure that I had MS and wasn't just lazy or crazy! Yep, I sure had (and still have) that crud on my brain and it was worse than it was in 1993! I did Copaxone back in 2000 until I had a negative reaction to a shot in my abdomen and passed out and he lost his job in 2002 which was after 911 happened. Financially we were up and down for some time and then I got back on Copaxone in 2010 when he was working for his big company he use to work for before and I had 15 months free medication and quit when I felt that I had a bad reaction to it! But, yesterday I saw my Neurologist I've seen off and on for the last 14 years and the reaction I've been thinking I'm having is just the paranoia that diabetics and others have towards needles!! Because I've had some crazy relapses of all kinds and now, since 2010, progressive relapsing ( hopefully always) remitting MS I'm working on getting back on Copaxone where I only have to take 3 shots a week. My doctor said I need to take 6000 IU Vitamin D3 not just the 400 IU vitamin D I thought was enough! I guess Vitamin D needs to be D3 in order for our bodies to Absorb it! I understand it's good for energy! So is the sun in a modest Vitamin D way according to him! You know, the sun sends Vitamin D down to us! I feel like an anomalies! Good luck to you both!
we miss you but understand and hope you are doing well and enjoying what you can do!
Hi RR-
Quix, our resident MD, is here on an occasional basis. She pops in from time to time when she can. She has taken a step back from the group so that she could focus on her 3D life :-)It's possible that she will read your thoughts, I just dodin't want you to think you were being ignored :-)
In any event, welcome to the group! You and I were diagnosed in the same year :-)
Kyle
Quix, our resident MD, is here on an occasional basis. She pops in from time to time when she can. She has taken a step back from the group so that she could focus on her 3D life :-)It's possible that she will read your thoughts, I just dodin't want you to think you were being ignored :-)
In any event, welcome to the group! You and I were diagnosed in the same year :-)
Kyle
Quix- I see this is an old post, 2007, but I actually signed up for this particular community on this particular site to tell you: I've seen your name in various forums, while "just passing through" (looking for ANY MS information I could get my hands on after my dx in 2011, as I was SO scared, shocked, + all the other lovely feelings we get @ initial diagnosis!). Anyway, it wasn't until stumbling on the post here that I've read your actual "MS story". It was obvious in the few things I'd read elsewhere that you have a medical background, I just didn't know how/where-- and am not one to go all "stalker" trying to find out ; ) . I don't know that you'll even see this response, as you may have long-since abandoned this forum (?), but I feel the need to tell you: I hope you understand the impact you've had on others with MS through your helpful & kind words within the great big 'ol world-wide-web. And I hope you always know that you've not "lost" whatever it was in your heart that pushed you through your medical education, through the years spent treating children & others-- but that you've simply 'switched gears', and have had a very big impact on an audience I'm not sure you even know you have! So, with that, I for one Thank You, ma'am! ; )
My neurologist said I don't have MS and I had a false/poitive acetcholyn antibodiectest for Myasthenia Gravis. Ive waited six months but my symptoms are getting worse noticeably the stiff legs and blurry vision. I can't go out incase my legs stop working. I had three MRI scans one had a lesion but again the neurologist said i must have moved in the scanner !!! Yeah right !!! Im being treated like a hyperchondriac and its getting me down. So fed up
Hi DA - Welcome to the group.
This thread is a little old, it was tarted nearly 7 years ago and many of the participants may no longer visit. Why not "Post A Question" via the link at the top of the page. You can introduce yourself and tell us a little about what's going on. We're a pretty friendly bunch :-)
Kyle
This thread is a little old, it was tarted nearly 7 years ago and many of the participants may no longer visit. Why not "Post A Question" via the link at the top of the page. You can introduce yourself and tell us a little about what's going on. We're a pretty friendly bunch :-)
Kyle
I hope your neuro is not going down the road of attributing your symptoms to conversion disorder--where the mind "converts" some psychological problem into physical symptoms. It's pretty controversial except to many doctors who would rather refer people to a psychiatrist than get to the bottom of their patient's symptoms.
In any case, conversion disorder is supposed to be a diagnosis of exclusion--all reasonable attempts to rule out an organic cause are supposed to be done first. And true conversion disorder is probably much rarer than MS or its mimics. Am a bit suspicious as you had white spots that she seems to have been dismissive of.
In any case, conversion disorder is supposed to be a diagnosis of exclusion--all reasonable attempts to rule out an organic cause are supposed to be done first. And true conversion disorder is probably much rarer than MS or its mimics. Am a bit suspicious as you had white spots that she seems to have been dismissive of.
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