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New and undiagnosed - My story
I have come back to this forum several times in the last 6 weeks or so. Many aspects of your story have sounded very familiar to mine and it has helped to know that I am not completely alone in my experience. Although I don't know that I have MS, or even if that is a reasonable suspicion at this point, I hope it is OK if I hang out here with you for awhile.
Until 2.5 months ago, I was a healthy, active 31-year-old mother of 2 young kids. I work full-time as an RN, with most of my work experience in psychiatry. I was feeling a little run down physically and mentally by the beginning of September and was having increased number of migraine-like headaches (I have a history of infrequent headaches that meet criteria for migraines. My family physician was aware but I was never formally worked up or treated for them as I only had 2 or 3 a year and they were moderate in severity). I assumed I just needed a break and took some vacation time. By the end of September I started feeling very dizzy everytime I stood up. It was a very significant dizziness that would last for several minutes. At times I felt I was going to pass out. I would grab onto furniture or crouch to the floor, fearing I would fall. I dismissed this as low blood pressure (which I've had previously) and made a point of increasing my fluids. Oct 2 is the day that everything changed. I had a "migraine" all day and the dizziness was constant. I was in a complete mental fog. I walked to the corner store and was so grateful to run into my mom because the dizziness was to the point I was afraid I couldn't make the short walk home alone. I went to work Oct 3. I had a horrible headache that wasn't responding to the usual ibuprofin I take for migraine. I had to concentrate as I walked, willing myself not to stagger. I went to my family doctor who felt I had an inner ear disorder. She made a referral to ENT, told me not to drive and to take a couple days off work. The next few days continued the same way. I was relieved it was just a relatively benign inner ear disorder. Three days later I had an experience that forced me to question that diagnosis. I was alone with my 3 year old and got up from sitting. I felt so dizzy, I lowered myself to the floor to wait it out. Rather than improve, I got worse. I could not tolerate sitting up and laid down. My body felt unbelievably heavy. As I lay on the ground, I had the feeling I was going to fall, even though there was no way I could. Several days after that, my proximal leg muscles (bilaterally) started buckling at times. My upper back muscles would tighten- initially I thought it was because of the tremendous head pain that was constant. At times, my neck muscles would spasm and I developed a slight "bob" of my head. It was uncomfortable, but not truly painful. I could not put chin to chest and my ability to turn my head to the side was very limited. I also had constant pins and needles, particularly in my right foot. It would fall asleep while I was walking. At times, it got so cold it was painful. Throughout all of this, my right eye would fully dilate and stay like like, with the left eye remaining normal. My right eye would fully constrict and then dilate very rapidly. My vision would blur and I would try to stop the discomfort by closing that eye.
I went to the ER. The doctor there, without any tests or assessment beyond what the triage nurse had done, told me I had West Nile Encephalitis, although it could be a brain tumour or MS. He then sent me home, with a CT booked for a couple days. He also referred me to an internist, saying the neurologists were too busy. (I should add that I have since learned this ER doc is infamous for ridiculous assessments and differentials and just all around shoddy work. I have to admit, as a nurse, if someone told me that an ER doc made that diagnosis without any testing and the patient wasn't hospitalized, I would be very suspicious of that story. But it actually happened). For the next 2 days I had the upsetting thought that I knew I had been afebrile through all of this, which I thought ruled out encephalitis. I became terrified I had a brain tumour. They did pull some blood at the ER and the only abnormality was that my platelets were very mildly decreased at 120. The neurologist also muttered something about my white blood cells being low, but even after asking questions about that, I don't really have a clear understanding of how low or even if in fact that's what he meant. Communication is not his forte.
The CT came back clean. The internist queried vasculitis. At this point I still hadn't seen a neurologist or even had a thorough neurological assessment. Over the course of 2 days, the headaches, dizziness, and mental fog improved. I was left with bilaterally weak legs and discomfort in my right eye. It was at this point that I saw a neurologist. He admitted me for 2 days. Someone finally did a neurological assessment. I had no plantar reflexes bilaterally although sensation was intact. My ankle reflexes were sluggish. I had clonus with other reflexes (I can't remember which reflexes that was present in). I do know that my upper body would twitch uncontrollably when he tested my knee reflexes. He found weakness in my proximal leg muscles. He found no other abnormalities. While admitted, I had an LP completed (normal), Evoked potentials (normal) EMG (normal) and MRI without contrast (normal). The neurologist accused me of faking. I asked him about the reflexes and he shrugged and said "I guess you're just stressed". I said that as a psychiatric nurse, "conversion disorder" could not be definitively ruled in, and couldn't be definitively ruled out until another diagnosis was confirmed. I suggested if that was on the table, he needed to send me urgently to a psychiatrist while we looked at other differentials. He refused to refer me and instead said he would see me in 2 weeks.
I had been having pins and needles in my right foot and right side of my face throughout this. Shortly after I saw the neurologist the pins and needles became sharp pains around my right eye and temple. My right eye continued to dilate and feel very tired.
At my next appointment, the neurologist completely changed his tune, and said I had some kind of migraine disorder and he was going to refer me to a neurologist who specializes in headaches. I told him that although this had started with migraine like headaches, the current head pain was very different. He said "headaches change". I asked why I was having constant pain, rather than a migraine which comes and goes, with pain free periods. He told me I had taken too much ibuprofin and had a medication overuse headache "you did this to yourself" he told me. I had been taking some ibuprofin with minimal effect on the pain. It was well within the permitted amount, but I agreed to stop taking it. It wasn't having much, if any effect, anyway.
The sharp pains to my eye continued. I saw my family doctor who, not knowing what else to do, prescribed 10 mg Elavil. It actually had some effect in reducing the frequency of the pain. That lasted for about 5 days and then the pain started to get worse again. At one point, it felt like a match was lit above my eyebrow and then the fire spread across the right side of my forehead to just below my eye. The pain was unbelievable. That pain, combined with the fact that Elavil was having some effect, made me wonder if it was nerve pain. I went to my family doctor again, who agreed it seemed like a neuropathy and followed a nerve path. She increased the Elavil to 20 mg and has been trying to contact my neurologist, who is currently not responding to either of us.
So that's where I am right now. I apologize for my wordiness.
I hope everyone is well.
Until 2.5 months ago, I was a healthy, active 31-year-old mother of 2 young kids. I work full-time as an RN, with most of my work experience in psychiatry. I was feeling a little run down physically and mentally by the beginning of September and was having increased number of migraine-like headaches (I have a history of infrequent headaches that meet criteria for migraines. My family physician was aware but I was never formally worked up or treated for them as I only had 2 or 3 a year and they were moderate in severity). I assumed I just needed a break and took some vacation time. By the end of September I started feeling very dizzy everytime I stood up. It was a very significant dizziness that would last for several minutes. At times I felt I was going to pass out. I would grab onto furniture or crouch to the floor, fearing I would fall. I dismissed this as low blood pressure (which I've had previously) and made a point of increasing my fluids. Oct 2 is the day that everything changed. I had a "migraine" all day and the dizziness was constant. I was in a complete mental fog. I walked to the corner store and was so grateful to run into my mom because the dizziness was to the point I was afraid I couldn't make the short walk home alone. I went to work Oct 3. I had a horrible headache that wasn't responding to the usual ibuprofin I take for migraine. I had to concentrate as I walked, willing myself not to stagger. I went to my family doctor who felt I had an inner ear disorder. She made a referral to ENT, told me not to drive and to take a couple days off work. The next few days continued the same way. I was relieved it was just a relatively benign inner ear disorder. Three days later I had an experience that forced me to question that diagnosis. I was alone with my 3 year old and got up from sitting. I felt so dizzy, I lowered myself to the floor to wait it out. Rather than improve, I got worse. I could not tolerate sitting up and laid down. My body felt unbelievably heavy. As I lay on the ground, I had the feeling I was going to fall, even though there was no way I could. Several days after that, my proximal leg muscles (bilaterally) started buckling at times. My upper back muscles would tighten- initially I thought it was because of the tremendous head pain that was constant. At times, my neck muscles would spasm and I developed a slight "bob" of my head. It was uncomfortable, but not truly painful. I could not put chin to chest and my ability to turn my head to the side was very limited. I also had constant pins and needles, particularly in my right foot. It would fall asleep while I was walking. At times, it got so cold it was painful. Throughout all of this, my right eye would fully dilate and stay like like, with the left eye remaining normal. My right eye would fully constrict and then dilate very rapidly. My vision would blur and I would try to stop the discomfort by closing that eye.
I went to the ER. The doctor there, without any tests or assessment beyond what the triage nurse had done, told me I had West Nile Encephalitis, although it could be a brain tumour or MS. He then sent me home, with a CT booked for a couple days. He also referred me to an internist, saying the neurologists were too busy. (I should add that I have since learned this ER doc is infamous for ridiculous assessments and differentials and just all around shoddy work. I have to admit, as a nurse, if someone told me that an ER doc made that diagnosis without any testing and the patient wasn't hospitalized, I would be very suspicious of that story. But it actually happened). For the next 2 days I had the upsetting thought that I knew I had been afebrile through all of this, which I thought ruled out encephalitis. I became terrified I had a brain tumour. They did pull some blood at the ER and the only abnormality was that my platelets were very mildly decreased at 120. The neurologist also muttered something about my white blood cells being low, but even after asking questions about that, I don't really have a clear understanding of how low or even if in fact that's what he meant. Communication is not his forte.
The CT came back clean. The internist queried vasculitis. At this point I still hadn't seen a neurologist or even had a thorough neurological assessment. Over the course of 2 days, the headaches, dizziness, and mental fog improved. I was left with bilaterally weak legs and discomfort in my right eye. It was at this point that I saw a neurologist. He admitted me for 2 days. Someone finally did a neurological assessment. I had no plantar reflexes bilaterally although sensation was intact. My ankle reflexes were sluggish. I had clonus with other reflexes (I can't remember which reflexes that was present in). I do know that my upper body would twitch uncontrollably when he tested my knee reflexes. He found weakness in my proximal leg muscles. He found no other abnormalities. While admitted, I had an LP completed (normal), Evoked potentials (normal) EMG (normal) and MRI without contrast (normal). The neurologist accused me of faking. I asked him about the reflexes and he shrugged and said "I guess you're just stressed". I said that as a psychiatric nurse, "conversion disorder" could not be definitively ruled in, and couldn't be definitively ruled out until another diagnosis was confirmed. I suggested if that was on the table, he needed to send me urgently to a psychiatrist while we looked at other differentials. He refused to refer me and instead said he would see me in 2 weeks.
I had been having pins and needles in my right foot and right side of my face throughout this. Shortly after I saw the neurologist the pins and needles became sharp pains around my right eye and temple. My right eye continued to dilate and feel very tired.
At my next appointment, the neurologist completely changed his tune, and said I had some kind of migraine disorder and he was going to refer me to a neurologist who specializes in headaches. I told him that although this had started with migraine like headaches, the current head pain was very different. He said "headaches change". I asked why I was having constant pain, rather than a migraine which comes and goes, with pain free periods. He told me I had taken too much ibuprofin and had a medication overuse headache "you did this to yourself" he told me. I had been taking some ibuprofin with minimal effect on the pain. It was well within the permitted amount, but I agreed to stop taking it. It wasn't having much, if any effect, anyway.
The sharp pains to my eye continued. I saw my family doctor who, not knowing what else to do, prescribed 10 mg Elavil. It actually had some effect in reducing the frequency of the pain. That lasted for about 5 days and then the pain started to get worse again. At one point, it felt like a match was lit above my eyebrow and then the fire spread across the right side of my forehead to just below my eye. The pain was unbelievable. That pain, combined with the fact that Elavil was having some effect, made me wonder if it was nerve pain. I went to my family doctor again, who agreed it seemed like a neuropathy and followed a nerve path. She increased the Elavil to 20 mg and has been trying to contact my neurologist, who is currently not responding to either of us.
So that's where I am right now. I apologize for my wordiness.
I hope everyone is well.
Thank you for your comments, everyone. I really appreciate it.
Doublevision1: I could ask for a second opinion and be referred to a different neurologist. I live in Canada and the waitlist to see neurologists is extremely lengthy. I know the MS specialist here (who I understand is a very kind man and excellent diagnostician) is over a year.
I'm hoping the headache neurologist will help. I figure she will know early on if what I have could reasonably be a migraine disorder, or if something has been missed. I guess it's always that debate of whether you stick it out with the doctor you have and see how far they get, or do you jump ship and hope to get someone better.
JoJoGranny; I was very naive about migraines before. Because my previous headaches were so mild, I never gave them much thought. I was crabby with them, but for the most part my functioning wasn't affected. And I assumed that if you had headaches, they would be fairly consistent in presentation throughout your life. I guess that's wrong. Nobody else in my family has migraines, which I understand is unusual. A friend told me that she recently read there is some thought migraines may have an autoimmune component, which is interesting because my family does have a very strong autoimmune disease history.
Doublevision1: I could ask for a second opinion and be referred to a different neurologist. I live in Canada and the waitlist to see neurologists is extremely lengthy. I know the MS specialist here (who I understand is a very kind man and excellent diagnostician) is over a year.
I'm hoping the headache neurologist will help. I figure she will know early on if what I have could reasonably be a migraine disorder, or if something has been missed. I guess it's always that debate of whether you stick it out with the doctor you have and see how far they get, or do you jump ship and hope to get someone better.
JoJoGranny; I was very naive about migraines before. Because my previous headaches were so mild, I never gave them much thought. I was crabby with them, but for the most part my functioning wasn't affected. And I assumed that if you had headaches, they would be fairly consistent in presentation throughout your life. I guess that's wrong. Nobody else in my family has migraines, which I understand is unusual. A friend told me that she recently read there is some thought migraines may have an autoimmune component, which is interesting because my family does have a very strong autoimmune disease history.
Meegze, I am undiagnosed as well, but right now, being that my MRIs are all normal, we are pursuing the Atypical Complex Migraine diagnosis. In my research, the symptoms can mimic a variety of other neuro diseases, even MS. I have seizures with mine (if that's what it is). I've been down the conversion disorder road too. Not fun, and nothing else was ruled out first. After a lot of terrible drugs and months of unnecessary therapy (which I did get some value from -- I guess we all could use a little), the therapist told me she really didn't think I had a conversion disorder, called the referring neuro and recommended a follow-up. I switched to an MS specialist, and I love her. She is pursuing MS, but while we are waiting for something to hold on to for a diagnosis (or not happen, as it were), the medicine she prescribed, Topomax has my seizures under control, and all the other symptoms have almost completely disappeared. I too had the numbness and tingling, the dizziness, and a variety of other symptoms that can come with migraine auras. And they can come days before and last for days after. In my case, I didn't even have an actual headache but a seizure instead. That happens with atypicals sometimes. Good luck to you, and keep us posted. Maybe your doc will try you on the Topomax.
what abuot the headache dr? Did you see him yet? I have migraine never knew there was a specific diagnosis requirement. I had them since I was a teen, and one day figured out they were migraines when a doctor asked me to describe the headache and said "that's a migraine". (I have the classic kind with visual aura, as well as I get the ice pick type)
I do get vertigo / dizzyness before the pain hits.
Migraine can be a symptom of something (my case my blood disorder increased my migraines from ocasionally to frequent), or it can be the disorder itself. You need someone who can figure that out!
I do get vertigo / dizzyness before the pain hits.
Migraine can be a symptom of something (my case my blood disorder increased my migraines from ocasionally to frequent), or it can be the disorder itself. You need someone who can figure that out!
Sorry for the wordiness.
I will try to keep things short and more concise. Once I get going, I have a tendency to talk. And I haven't actually gone through the whole thing, start to finish with anyone so it felt very therapeutic to just get it out.
I can definitely understand the difficulty in reading through a page of words without a break and I will try to keep that in check.
Thanks!
I will try to keep things short and more concise. Once I get going, I have a tendency to talk. And I haven't actually gone through the whole thing, start to finish with anyone so it felt very therapeutic to just get it out.
I can definitely understand the difficulty in reading through a page of words without a break and I will try to keep that in check.
Thanks!
I hope you are here to stay...that was a bit wordy and without a break. A lot of us cannot read long paragraphs so its easier to break them down into shorter sentences.
I don't see much on your profile but if you live close or in a larger city try to find an MS specialist, it is well worth it. I was sent straight to an MS specialist at UCSF and I had a diagnosis in 4 months. Which is pretty fast actually.
There are a lot of diseases that mimic MS and they to rule out
everything else before they have a proper diagnosis of MS. And it could be one of the other ones too. I just know MS.
I am sure you will get more better, i know that's improper, but its what I said in my mind and I liked it. It made me laugh...
stick around,
meg
I don't see much on your profile but if you live close or in a larger city try to find an MS specialist, it is well worth it. I was sent straight to an MS specialist at UCSF and I had a diagnosis in 4 months. Which is pretty fast actually.
There are a lot of diseases that mimic MS and they to rule out
everything else before they have a proper diagnosis of MS. And it could be one of the other ones too. I just know MS.
I am sure you will get more better, i know that's improper, but its what I said in my mind and I liked it. It made me laugh...
stick around,
meg
Hi meegze - Welcome. Feel free to hang around as long as you like :-) I hope others here can help in your search for answers.
Kyle
Kyle
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