Aa
What it took for a diagnosis of MS
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 had a couple weeks of a weird sensation of warm water running down my right thigh.
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. Ya know, the vertigo had been quite enough....
I'm now two weeks into therapy with Avonex. I'm in a new relapse (my fourth in the 30 months) and just had another 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. 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 lesion that presses 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
Any comments? Later I'll try to list some of the things I've learned from all this. Quix
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 had a couple weeks of a weird sensation of warm water running down my right thigh.
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. Ya know, the vertigo had been quite enough....
I'm now two weeks into therapy with Avonex. I'm in a new relapse (my fourth in the 30 months) and just had another 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. 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 lesion that presses 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
Any comments? Later I'll try to list some of the things I've learned from all this. Quix
I was diagnosed with MS 12 years ago. It is not unheard of to actually have MS and have NO lesions appear on MRI. BUT...in time, if you indeed do have MS, the lesions will make themselves known. I know there are some people diagnosed with MS, that have never had lesions.
Of course, all of us hope that you do NOT have MS. MS can be a very difficult disease to dx, since it can mimic so many other diseases or even a combinatiion of diseases...Diabetes, Fibromyalgia, Chronic Fatigue Syndrome, Vitamin B-12 deficiencies, Peripheral Neuropathy and the list goes on.
I know what it's like to feel helpless while waiting for a diagnosis of "SOMETHING." You begin to doubt yourself, your family doubts you, you wonder if you are crazy, you worry that your doctor thinks you are a hypochondriac...I've been there. Despite 7 highlighted lesions in my brain and one in my spinal cord, I had a Neuro that would not diagnose MS because my evoked potentials came back normal. I was stuck in la-la land for many years. All I wanted was help. If I indeed had MS, I wanted to begin treatment to slow it's progression. It wasn't that I WANTED to have MS. I consequently told the Neuro good-bye (nicely, even though you can imagine what I really wanted to tell him) and went to a teaching hospital in Virginia.
I finally submitted to a spinal tap, which showed the typical banding seen in patients with inflammation of the Central Nervous System. Put all the information and symptoms together after many years of complaints and badda bing...I was finally diagnosed with MS and put on Avonex. Happy? Yes, in the sense that I finally had a diagnosis, which was a disease that could be treated; if only with expectations that I would be in that percentage of 30-40-% that the Interferon Beta 1-A 'might' help. It was worth the gamble. But happy to have MS...HECK NO!
It's so hard to be between the symptoms and the diagnosis. Sometimes it can be a long wait. Now I look at things differently than I did before...if I really didn't have MS, would it have been wise to treat me for a disease I only "thought" I had, even though I had detectable lesions, relapses and remissions and certainly all the symptoms? I was literally a "text book case" of someone with MS, as the diagnosing Neurologist finally said.
I truly believe in today's medical world, most Neurologists err on the side of caution. If it looks like a duck and acts like a duck, treat it as a duck. I think that most doctor's feel that it is better to start you on treatment for MS and it's flair-ups, than to not treat you at all. As is usually the case, the lesions from MS will eventually show up.... All the symptoms will finally fit. It's the waiting that can be the hardest thing about dealing with MS. It took 3 long years for me to finally receive my diagnosis. Believe me when I say....family members and friends were standing in line, waiting to offer their apology's for doubting me.
Just for information purposes- (the symptoms during pregnancy)...MS symptoms seem to abate and return about 6 months after delivery. It seems that hormones present during pregnancy and the female body's immune system changes; (that allows the foreign "being" to develop without the mother's body attacking the baby as a foreign invader or infection) prevents or stops MS symptoms in it's tracks. If only for a little while. This is 'one' area the researchers are very interested in. This offers us hope. We not only need a CURE but a way to REVERSE the damage already done by Multiple Sclerosis.
If you really feel that something is wrong, despite what some doctors may tell you; keep fighting...there ARE doctor's that will listen. NEVER give up, NEVER!
There is probably no better place to go for help than a center that actually specializes in treating Multiple Sclerosis. If it means you have to travel across the United States to find such a center, than it's worth every penny spent. It's your health and well-being, we are talking about here. You can't put a price tag on something that important.
Heather (And that's not Heather with MS, it's Heather that lives with a disease called MS.) MS does not define who I am. I'm too stubborn to let it.
Of course, all of us hope that you do NOT have MS. MS can be a very difficult disease to dx, since it can mimic so many other diseases or even a combinatiion of diseases...Diabetes, Fibromyalgia, Chronic Fatigue Syndrome, Vitamin B-12 deficiencies, Peripheral Neuropathy and the list goes on.
I know what it's like to feel helpless while waiting for a diagnosis of "SOMETHING." You begin to doubt yourself, your family doubts you, you wonder if you are crazy, you worry that your doctor thinks you are a hypochondriac...I've been there. Despite 7 highlighted lesions in my brain and one in my spinal cord, I had a Neuro that would not diagnose MS because my evoked potentials came back normal. I was stuck in la-la land for many years. All I wanted was help. If I indeed had MS, I wanted to begin treatment to slow it's progression. It wasn't that I WANTED to have MS. I consequently told the Neuro good-bye (nicely, even though you can imagine what I really wanted to tell him) and went to a teaching hospital in Virginia.
I finally submitted to a spinal tap, which showed the typical banding seen in patients with inflammation of the Central Nervous System. Put all the information and symptoms together after many years of complaints and badda bing...I was finally diagnosed with MS and put on Avonex. Happy? Yes, in the sense that I finally had a diagnosis, which was a disease that could be treated; if only with expectations that I would be in that percentage of 30-40-% that the Interferon Beta 1-A 'might' help. It was worth the gamble. But happy to have MS...HECK NO!
It's so hard to be between the symptoms and the diagnosis. Sometimes it can be a long wait. Now I look at things differently than I did before...if I really didn't have MS, would it have been wise to treat me for a disease I only "thought" I had, even though I had detectable lesions, relapses and remissions and certainly all the symptoms? I was literally a "text book case" of someone with MS, as the diagnosing Neurologist finally said.
I truly believe in today's medical world, most Neurologists err on the side of caution. If it looks like a duck and acts like a duck, treat it as a duck. I think that most doctor's feel that it is better to start you on treatment for MS and it's flair-ups, than to not treat you at all. As is usually the case, the lesions from MS will eventually show up.... All the symptoms will finally fit. It's the waiting that can be the hardest thing about dealing with MS. It took 3 long years for me to finally receive my diagnosis. Believe me when I say....family members and friends were standing in line, waiting to offer their apology's for doubting me.
Just for information purposes- (the symptoms during pregnancy)...MS symptoms seem to abate and return about 6 months after delivery. It seems that hormones present during pregnancy and the female body's immune system changes; (that allows the foreign "being" to develop without the mother's body attacking the baby as a foreign invader or infection) prevents or stops MS symptoms in it's tracks. If only for a little while. This is 'one' area the researchers are very interested in. This offers us hope. We not only need a CURE but a way to REVERSE the damage already done by Multiple Sclerosis.
If you really feel that something is wrong, despite what some doctors may tell you; keep fighting...there ARE doctor's that will listen. NEVER give up, NEVER!
There is probably no better place to go for help than a center that actually specializes in treating Multiple Sclerosis. If it means you have to travel across the United States to find such a center, than it's worth every penny spent. It's your health and well-being, we are talking about here. You can't put a price tag on something that important.
Heather (And that's not Heather with MS, it's Heather that lives with a disease called MS.) MS does not define who I am. I'm too stubborn to let it.
If there is anyone else that has posted their timeline story in a different place - can you add it to this thread so that everybody can read all the timelines of people that have been diagnosed with MS in one place?
These are Quix's words:
"........For anyone with an MS diagnosis, there's a bunch now that need to be added to this thread. If you already wrote one up and posted it, please copy and paste to here. Thanks"..................
SLlowe
Carol (Hey, Hotlegs, where's your story? Find it and get it here with the rest of us!....please)
Siddy - DONE
Burban-chick
Karina (karzme)
Angela
Kitten O
MedicGirl
JazzyFizzle
Savagek (Rob, if he will still have us)
Risnerrose (Sherry)
Karina2805
And Antone else who I missed, sorry, I was playing poker.... Quix
These are Quix's words:
"........For anyone with an MS diagnosis, there's a bunch now that need to be added to this thread. If you already wrote one up and posted it, please copy and paste to here. Thanks"..................
SLlowe
Carol (Hey, Hotlegs, where's your story? Find it and get it here with the rest of us!....please)
Siddy - DONE
Burban-chick
Karina (karzme)
Angela
Kitten O
MedicGirl
JazzyFizzle
Savagek (Rob, if he will still have us)
Risnerrose (Sherry)
Karina2805
And Antone else who I missed, sorry, I was playing poker.... Quix
The first diagnosing Neuro recommended Rebif which I declined because of side effects. After I declined Rebif the only thing he said to me on the phone was "well, good luck then". I tried to get copies from his office of the results from the 2 labs for my LP and Bloodwork from Quest which he ordered and met with a stone wall. His policy was because of HIPPA laws I would have to go to the hospital where he performed the LP and to Quest Diagnostic for blood tests results (even though he has them in his files). Quest would not release them to me without his written permission so it is a Catch-22 situation and I have yet to get to the hospital to try for the LP results. Bit late now, seeing it was almost 2 years ago. I haven't seen a doctor for MS in the nearly 2 years that I was dxed.
Other symptoms which I can deal with: are my feet and hands burn sometimes - usually late at night while in bed. By the end of the day my footdrop becomes a lot more evident and I can hardly lift my foot. Every night at 3 a.m. exactly my left hip itches and the more I scratch the more it itches. No rash, though. Most days I get overwhelming tiredness to the extent that my body literally droops over if I have overdone it..When I rest I can go again, for a while.
contd............
I took LDN for one year with no improvement in my left sided weakness but I did get an overall sense of well being. I have heard that it helps MS sufferers with other symptoms such as bladder etc. but I guess I am lucky in that respect so far but I shouldn't speak too soon. I can say for a fact that I will end up in a wheelchair unless there is a miracle. Doctor thinks so too.
Marcie
Other symptoms which I can deal with: are my feet and hands burn sometimes - usually late at night while in bed. By the end of the day my footdrop becomes a lot more evident and I can hardly lift my foot. Every night at 3 a.m. exactly my left hip itches and the more I scratch the more it itches. No rash, though. Most days I get overwhelming tiredness to the extent that my body literally droops over if I have overdone it..When I rest I can go again, for a while.
contd............
I took LDN for one year with no improvement in my left sided weakness but I did get an overall sense of well being. I have heard that it helps MS sufferers with other symptoms such as bladder etc. but I guess I am lucky in that respect so far but I shouldn't speak too soon. I can say for a fact that I will end up in a wheelchair unless there is a miracle. Doctor thinks so too.
Marcie
My timeline diagnosis brought forward
I have led a very active life, worked out, walked, never overweight , low blood pressure, no medical problems, etc. and as far back as I can remember I have been relatively healthy. Until………
Fast forward to 1998 at 58 years of age when I started to notice little things at first and not all at one time but spread out over the next 5 years. Back pain, neck pain, vertigo (BPPV), legs aching more than usual. If I looked up to the ceiling and back quickly I experienced a sensation of falling for maybe 20 seconds when the room spun around. I had excruciating stabs of pain up the side of my ear/face which could be a single one or occur every 5 minutes or so for a couple of days. I had a particularly painful bout when I traveled to New Zealand for the death of my mum (stress). The vertigo was mild and it improved and was nothing I couldn't handle by avoiding those movements. I still get it occasionally.
I had a couple of small mishaps which I did not put down to anything serious. I was climbing up a ladder and my leg just did not connect with the second step - it seemed like I was stepping on air and I fell backwards but I got up and carried on. Then I got out of bed one morning and my leg collapsed underneath me leaving me wondering what the heck was going on. Doctor(s) put it down to my lower back pain and a pinched nerve. I also had a very bad aching right hip. They reviewed X-Rays and MRI’s of my spine which showed narrowing at L4-L5. I had an MRI of my brain (2001) which showed one white spot (not explained to me at the time but later thought to be a TIA). My neck pain "resolved" itself by "spontaneous healing" as one Neuro said. That was a joke as I was supposed to wear a neck collar and never did - but it healed anyway.
I continued having hip/back pain until 2004. Had some floaters and light flashes and things going on in my right eye, leaving one permanent black spot out of my line of vision. The Ophthalmologist said there was nothing wrong with my eyes or eyesight.
In 1/2004 my left arm started to hurt when raising it above my head so I stopped trying to raise it. My Neurologist thought it might have been a touch of Bursitis. X-rays showed several lucencies in my bone and it was concluded that it was consistent with disuse of the arm or Multiple Myeloma (bone cancer). Cancer was ruled out after tests so it was put down to "disuse". Eventually that pain went away and I was left with a somewhat weaker arm/hand. I did some physical therapy to help strengthen the arm but it did not last too long before getting weak again.
In between all this I had a few emergencies and procedures, but they are not, I emphasize NOT, relevant to MS but probably speak to stress factors that did not help me. While these were going on I had little time to worry about the smaller things going on in my body.
2/2003 I had a DVT in my left leg and taken off HRT abruptly.
5/2004 Total Right Hip replacement surgery (back and hip pain disappeared) but my left side arm and leg became weaker after surgery.
2/2005 dieulafoy lesion which required a blood transfusion. It is a bleeding artery in the stomach and happens spontaneously, without warning. There is no known cause.
12/2006 fall in the shower requiring 26 stitches to buttocks - most likely due to dizziness
4/2007Just recently had another fall requiring foot surgery - my footdrop caused me to trip over the carpet.
Anyway, going back to July 2005 I decided that because my left arm was getting weaker and my left leg was going the same way, with pronounced footdrop I should go back to my primary care doctor to find out what was going on. This primary care doctor has a sister-in-law with MS but never even dreamed, thought or mentioned the possibility to my husband and I. He thought I had another TIA. He referred me to a new Neurologist as mine had left Florida for N.C. I was on Plavix which is an anti-platelet medication in view of the previous DVT so a bit of head scratching went on as to why it was not working to prevent TIA’s if this was indeed what was happening.
In August 2005 the new Neurologist saw me and after reviewing my medical history almost immediately diagnosed MS. He asked a lot of questions and did some physical tests for arm and leg weakness. I had an excessively strong left knee jerk reaction which is not indicative of me having had a stroke. He managed to pull out a long time forgotten memory of mine when I was 21 after the birth of my daughter. I could not physically get out of bed I was hurting all over and yhe doctor thought it was Polio. After a few weeks I was okay again. I can't remember being treated with any meds. Anyway, this episode was used by my present day Neurologist as probably being the first symptoms of my MS. I tend to disagree, but what do I know? I forgot all about it in the years that followed never thinking for one moment that it might be in any way significant after 30+ years.
My new Neurologist wanted a second opinion from an expert but before that he wanted to do some tests as follows:
Full bloodwork to rule out everything possible, i.e. Lupus, Lyme, RA, AIDs, Syphillis, etc. He said all blood tested normal.
VER -Virtual Evoked Response (eyes) - Nothing out of the normal
SPINAL TAP ( My spinal fluid samples were sent to two different laboratories. One result came back NEGATIVE for oligoclonal bands one came back POSITIVE for 2 oligoclonal bands.
MRI - brain - Two current white spots on the brain
EMG's inconclusive but not 100% normal
.
TREATMENT
Solumedrol for 5 days - not effective for me
Second Opinion from MS Specialist:
December 2005 - I was now using a walking stick and was sent to the other Neurologist who specializes in MS and runs an MS Clinic. I was armed with all the test results, MRI’s, reports, etc. He put all these results together and, based on his experience, he diagnosed me with Secondary Progressive MS. The Neurologists always prefer to have at least one prior incident to dx MS so the early one was deemed to be the “first”. It was also noted that a 2003 MRI showed variability and some resolution of previous lesions seen on MRI's in 2001 & 2002 which means my body was probably trying to repair itself but the demyelinating process could not catch up with it all. My MRI's (all were performed with and w/o contrast) in 2004, 2005 revealed atypical T2 signal changes more consistent with MS demyelinating and axonal processes than ischemia (TIA's or mini strokes).
Since my diagnosis I have had very slow progressive weakness in my left arm and leg and have to be careful of tripping. My Orthopedic doctor is making me an AFO brace after this last fall to help with the footdrop. The weakness varies in my left hand from weak to useless. I get severe night sweat. My left leg swells up in the evenings if it is not propped up and it sometimes feels numb and I have to poke it to see if anyone is home.
contd.........
For anyone with an MS diagnosis, there's a bunch now that need to be added to this thread. If you already wrote one up and posted it, please copy and paste to here. Thanks.
SLlowe
Carol (Hey, Hotlegs, where's your story? Find it and get it here with the rest of us!....please)
Siddy
Burban-chick
Karina (karzme)
Angela
Kitten O
MedicGirl
JazzyFizzle
Savagek (Rob, if he will still have us)
Risnerrose (Sherry)
Karina2805
And Antone else who I missed, sorry, I was playing poker.... Quix
SLlowe
Carol (Hey, Hotlegs, where's your story? Find it and get it here with the rest of us!....please)
Siddy
Burban-chick
Karina (karzme)
Angela
Kitten O
MedicGirl
JazzyFizzle
Savagek (Rob, if he will still have us)
Risnerrose (Sherry)
Karina2805
And Antone else who I missed, sorry, I was playing poker.... Quix
bumping it up, Q
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