His name is not Dr. Spaceman
July 12, 2010 9:15 AM Subscribe
Over the past eight years I have exhibited what might be the early signs of MS. It's my understanding that early on, the only way to know is to get an MRI. However, my GP is dismissive and doesn't seem familiar with this. I am in the United States. YANMD but I don't know if my doctor knows what he's talking about. How to proceed?
I am 26 years old, female. I am not certain I have MS and I am in no way a hypochondriac. I understand that MRIs are expensive, and that GPs are under pressure to not refer people for expensive procedures. Any of these symptoms could possibly be other things, and I hope that's all they are. However, I'm also aware that I am not bulletproof, and that it's typical that the early signs of MS are dismissed or confused for other things. The most recent symptom is obscure enough that I finally went to a doctor. What worries me is my GP's dismissiveness and seeming lack of knowledge.
I've mostly assumed these symptoms were random things, but a few months ago, while taking a hot bath, I had the most bizzare blurred vision I've ever experienced. It was not uniformly blurry, and it created a pattern on my eye similar to that of waterdrops on glass. Those drops inched slowly around and it felt like they were flashing, kind of like when you look at a light and the afterimage is burned into your vision, only it wouldn't go away. Parts of my vision were clear. It came on gradually and got worse the longer I was in the bath, about twenty minutes. (While it was happening, I didn't think it might have anything to do with the bath.) It went away within minutes once I got out which struck me as strange. I did not have any sort of headache and I've never experienced any sorts of vision spots or anything before. When I looked up "hot bath blurred vision" I read that this is known as Uhthoff's Symptom and that exact phenomena used to be used to diagnose MS. I also read that this is a common early symptom. (However, it's related to less serious things that aren't MS as well, assuming I even experienced the same thing.)
So I went to my doctor and explained what happened. I did not tell him my suspicions at first. He was dismissive (but not rude) and said it was probably nothing. I hesitantly mentioned that I was concerned because I had heard it was an MS symptom, but he didn't seem to have ever heard of it. He then said that would not be an early symptom of MS; instead I would have trouble walking or gripping things. It is possible that I read some bad information about whether Uhthoff's Sign is a common early symptom, but aren't the things he describes actually symptoms of progressed MS, not early MS?
He was only willing to refer me to an ophthalmologist. I'm uncomfortable because I don't think my GP knows much about MS, and now I'm worried that if I do happen to have it, he won't be any help until it's progressed. I have heard that there are medications that help slow the progression so it helps to catch it early. But am I mistaken? If it doesn't matter then I don't mind waiting to see what happens. Is what he says about the symptoms correct?
Where should I go from here? Should I get a new GP? I'm hesitant because it's plausible that my GP is right and what I read on the internet is wrong. Even if he's wrong, should I expect the same reaction from another GP? Am I worrying about nothing? If not, is there a way I can bypass my GP and get an MRI?
I'm in the U.S., in the Los Angeles area, and my health insurance is with Anthem Blue Cross if it matters.
If it's relevant to whether I should try to get an MRI or whether other GPs will agree this is not cause for alarm, these are my symptoms so far:
* In my late teens I started suffering severe fatigue. I wrote this off as universal. Now I am done with school, I am fortunate enough that I do not have to work, and I have no stress or responsibilities or children. I am not depressed in the least, I have a wonderful husband, and I have lots of goals and things I enjoy and places I volunteer. However, I will sleep for 12 to 16 hours at a time, for weeks at a time, and still be tired. This is not laziness. Sometimes the fatigue will go away for weeks or even months for no obvious reason, but mostly it's always there. Eliminating sugar, starch, and caffeine helped marginally. I do not have sleep apnea or narcolepsy. I am not anemic.
* When I was 18, I briefly had a problem where my arms would tingle if I exercised, similar to how it feels when they fall asleep. I was not waving my arms around or lifting anything. This would happen even on a treadmill or from particularly heavy walking. My blood sugar and pressure were fine. I wondered if it was poor circulation but my extremeties were hot. I couldn't figure out what was causing it, then after a few weeks, it stopped.
I had another couple of weeks of this when I was 19 or 20. It went away on its own again.
When I was 22, I had the same feeling return for a few weeks, except this time it wasn't triggered by exercise. It was just there. It bothered me for a few weeks and went away. I wondered if it was carpal tunnel but it never got bothersome enough for me to worry about before it stopped.
When I was 24, it came back again for another couple weeks. I again wondered if it was carpal tunnel, but it didn't seem to make a difference what I did with my arms or wrists or hands. Sometimes it would flare up painfully; it was the worst it had ever been. I didn't have health insurance and it went away on its own again, so I couldn't get it checked out.
Nothing since then (26 now).
* I am inordinately sensitive to heat; if I'm in the sun for even fifteen minutes, I will sleep for a full day unless someone forces me to get up. I am completely, utterly drained. It took me a while to realize that while most people get worn out by heat, its effect on me is overblown. The only thing I've found that this is associated with is MS. Is it associated with anything else? Trying to find a cause for this is what first made me wonder about MS, so when the bath tub incident happened and all the top results were for MS that stuck out to me.
* My executive function has declined noticeably since I was 18; I find it difficult to read anything when I used to be able to read a book a day, and it takes effort to follow a movie or a TV show. Currently this is diagnosed as ADHD and Adderall helps a lot, both with focus and the fatigue. I didn't know this was also an MS symptom until the bath tub incident made me read about MS again. Medicated I am able to function normally, but I am still exhausted when I wake up until my Adderall kicks in.
* Maybe Uhthoff's Symptom, if that's what I experienced. I have taken hot baths since and it has not happened again. Does that mean it's not Uhthoff's?
* My emotions and ability to be aroused have been blunted drastically over the past several years for no obvious reason. It has stood out to me and others as very noticeable. It is now difficult for me to become sad, angry, joyous, excited, or horny whereas I used to be a very emotional person. Mostly I feel mildly upbeat no matter what is going on, so only the sexual problem is bothersome. I used to masturbate every few days but for years now I have had no desire whatsoever; I get no pleasure from it when I try, and my orgasms have become increasingly infrequent and are a whisper when they happen. Nothing upsetting has happened to me to trigger this and I'm crazy about my husband. My bloodwork is good. My doctor checked various of my hormone levels re: the sexual dysfunction and they were all normal. I had written it off as something that happens to women sometimes but I have since read that blunting of emotions and sexual dysfunction is common with MS, so I wonder.
My motor skills are all normal, as far as I can tell.
I am 26 years old, female. I am not certain I have MS and I am in no way a hypochondriac. I understand that MRIs are expensive, and that GPs are under pressure to not refer people for expensive procedures. Any of these symptoms could possibly be other things, and I hope that's all they are. However, I'm also aware that I am not bulletproof, and that it's typical that the early signs of MS are dismissed or confused for other things. The most recent symptom is obscure enough that I finally went to a doctor. What worries me is my GP's dismissiveness and seeming lack of knowledge.
I've mostly assumed these symptoms were random things, but a few months ago, while taking a hot bath, I had the most bizzare blurred vision I've ever experienced. It was not uniformly blurry, and it created a pattern on my eye similar to that of waterdrops on glass. Those drops inched slowly around and it felt like they were flashing, kind of like when you look at a light and the afterimage is burned into your vision, only it wouldn't go away. Parts of my vision were clear. It came on gradually and got worse the longer I was in the bath, about twenty minutes. (While it was happening, I didn't think it might have anything to do with the bath.) It went away within minutes once I got out which struck me as strange. I did not have any sort of headache and I've never experienced any sorts of vision spots or anything before. When I looked up "hot bath blurred vision" I read that this is known as Uhthoff's Symptom and that exact phenomena used to be used to diagnose MS. I also read that this is a common early symptom. (However, it's related to less serious things that aren't MS as well, assuming I even experienced the same thing.)
So I went to my doctor and explained what happened. I did not tell him my suspicions at first. He was dismissive (but not rude) and said it was probably nothing. I hesitantly mentioned that I was concerned because I had heard it was an MS symptom, but he didn't seem to have ever heard of it. He then said that would not be an early symptom of MS; instead I would have trouble walking or gripping things. It is possible that I read some bad information about whether Uhthoff's Sign is a common early symptom, but aren't the things he describes actually symptoms of progressed MS, not early MS?
He was only willing to refer me to an ophthalmologist. I'm uncomfortable because I don't think my GP knows much about MS, and now I'm worried that if I do happen to have it, he won't be any help until it's progressed. I have heard that there are medications that help slow the progression so it helps to catch it early. But am I mistaken? If it doesn't matter then I don't mind waiting to see what happens. Is what he says about the symptoms correct?
Where should I go from here? Should I get a new GP? I'm hesitant because it's plausible that my GP is right and what I read on the internet is wrong. Even if he's wrong, should I expect the same reaction from another GP? Am I worrying about nothing? If not, is there a way I can bypass my GP and get an MRI?
I'm in the U.S., in the Los Angeles area, and my health insurance is with Anthem Blue Cross if it matters.
If it's relevant to whether I should try to get an MRI or whether other GPs will agree this is not cause for alarm, these are my symptoms so far:
* In my late teens I started suffering severe fatigue. I wrote this off as universal. Now I am done with school, I am fortunate enough that I do not have to work, and I have no stress or responsibilities or children. I am not depressed in the least, I have a wonderful husband, and I have lots of goals and things I enjoy and places I volunteer. However, I will sleep for 12 to 16 hours at a time, for weeks at a time, and still be tired. This is not laziness. Sometimes the fatigue will go away for weeks or even months for no obvious reason, but mostly it's always there. Eliminating sugar, starch, and caffeine helped marginally. I do not have sleep apnea or narcolepsy. I am not anemic.
* When I was 18, I briefly had a problem where my arms would tingle if I exercised, similar to how it feels when they fall asleep. I was not waving my arms around or lifting anything. This would happen even on a treadmill or from particularly heavy walking. My blood sugar and pressure were fine. I wondered if it was poor circulation but my extremeties were hot. I couldn't figure out what was causing it, then after a few weeks, it stopped.
I had another couple of weeks of this when I was 19 or 20. It went away on its own again.
When I was 22, I had the same feeling return for a few weeks, except this time it wasn't triggered by exercise. It was just there. It bothered me for a few weeks and went away. I wondered if it was carpal tunnel but it never got bothersome enough for me to worry about before it stopped.
When I was 24, it came back again for another couple weeks. I again wondered if it was carpal tunnel, but it didn't seem to make a difference what I did with my arms or wrists or hands. Sometimes it would flare up painfully; it was the worst it had ever been. I didn't have health insurance and it went away on its own again, so I couldn't get it checked out.
Nothing since then (26 now).
* I am inordinately sensitive to heat; if I'm in the sun for even fifteen minutes, I will sleep for a full day unless someone forces me to get up. I am completely, utterly drained. It took me a while to realize that while most people get worn out by heat, its effect on me is overblown. The only thing I've found that this is associated with is MS. Is it associated with anything else? Trying to find a cause for this is what first made me wonder about MS, so when the bath tub incident happened and all the top results were for MS that stuck out to me.
* My executive function has declined noticeably since I was 18; I find it difficult to read anything when I used to be able to read a book a day, and it takes effort to follow a movie or a TV show. Currently this is diagnosed as ADHD and Adderall helps a lot, both with focus and the fatigue. I didn't know this was also an MS symptom until the bath tub incident made me read about MS again. Medicated I am able to function normally, but I am still exhausted when I wake up until my Adderall kicks in.
* Maybe Uhthoff's Symptom, if that's what I experienced. I have taken hot baths since and it has not happened again. Does that mean it's not Uhthoff's?
* My emotions and ability to be aroused have been blunted drastically over the past several years for no obvious reason. It has stood out to me and others as very noticeable. It is now difficult for me to become sad, angry, joyous, excited, or horny whereas I used to be a very emotional person. Mostly I feel mildly upbeat no matter what is going on, so only the sexual problem is bothersome. I used to masturbate every few days but for years now I have had no desire whatsoever; I get no pleasure from it when I try, and my orgasms have become increasingly infrequent and are a whisper when they happen. Nothing upsetting has happened to me to trigger this and I'm crazy about my husband. My bloodwork is good. My doctor checked various of my hormone levels re: the sexual dysfunction and they were all normal. I had written it off as something that happens to women sometimes but I have since read that blunting of emotions and sexual dysfunction is common with MS, so I wonder.
My motor skills are all normal, as far as I can tell.
I'd bypass your GP at this point and make an appointment directly with a neurologis. He/She will be far more in tune as to whether these symptoms point to MS and will be in the best position to say whether further diagnostic tests (MRI, etc.) are needed.
posted by MediaMer at 9:29 AM on July 12, 2010 [1 favorite]
posted by MediaMer at 9:29 AM on July 12, 2010 [1 favorite]
You say you're not depressed and I respect that, but honestly, many of the symptoms you list here are suggestive of depression.
Your first step should be to see an eye doctor as recommended. If that exam is normal, and if you don't experience any further visual symptoms, it's probably nothing to worry about. For your other symptoms, I would seriously consider speaking with someone about possible depression. You could also ask your doctor to refer you to a neurologist, but I wouldn't expect a GP to order an MRI based on what you've reported here.
posted by tetralix at 9:32 AM on July 12, 2010 [1 favorite]
Your first step should be to see an eye doctor as recommended. If that exam is normal, and if you don't experience any further visual symptoms, it's probably nothing to worry about. For your other symptoms, I would seriously consider speaking with someone about possible depression. You could also ask your doctor to refer you to a neurologist, but I wouldn't expect a GP to order an MRI based on what you've reported here.
posted by tetralix at 9:32 AM on July 12, 2010 [1 favorite]
Certainly seeing an ophthalmologist would be a prudent next step. From what I understand, ophthalmologists often do end up diagnosisng MS, although honestly I don't think it's all that likely that that's what you have.
posted by infinitywaltz at 9:36 AM on July 12, 2010
posted by infinitywaltz at 9:36 AM on July 12, 2010
You might also want to get a consult with an endocrinologist. Some of what you are describing can also be related to thyroid issues, as well as some other conditions like Sjogren's. My wife went through some similar symptoms, as well as some very different ones, but it wasn't until we talked to a good endocrinologist that we started to get some answers.
In any case, good luck with it. Sometimes diagnoses like these can take some time and a lot of aggravation.
posted by Leth at 9:38 AM on July 12, 2010
In any case, good luck with it. Sometimes diagnoses like these can take some time and a lot of aggravation.
posted by Leth at 9:38 AM on July 12, 2010
It's possible. Not a slam dunk that it's MS, but it is possible. As posted above, you need to see a neurologist. If your GP is dismissive (have you told the GP about the other symptoms?) then you should see a different doc. MS is a wildly varying condition, and whether or not you can walk well or grip things is only a symptom out of many. I've known way too many people with MS, and no two cases are the same.
posted by azpenguin at 9:40 AM on July 12, 2010 [1 favorite]
posted by azpenguin at 9:40 AM on July 12, 2010 [1 favorite]
I'd bypass your GP at this point and make an appointment directly with a neurologist.
It may be that the poster's health insurance requires a referral from the GP for a neurologist consult, so bypassing may not be an option. Asking for that referral seems like a decent middle ground between referral to an eye doctor and an expensive MRI, and it's hard to imagine why your doctor would refuse a simple request like that.
posted by mediareport at 9:41 AM on July 12, 2010
It may be that the poster's health insurance requires a referral from the GP for a neurologist consult, so bypassing may not be an option. Asking for that referral seems like a decent middle ground between referral to an eye doctor and an expensive MRI, and it's hard to imagine why your doctor would refuse a simple request like that.
posted by mediareport at 9:41 AM on July 12, 2010
By all means try to get a second opinion and/or arrange for a consultation with a specialist, but if they say the same thing then you should really be prepared to stop the DIY internet doctoring. "The University of Google" is not a medical school.
posted by Rhomboid at 9:43 AM on July 12, 2010
posted by Rhomboid at 9:43 AM on July 12, 2010
It might be worth looking to see if you have the plantar reflex, my neurologist did this when I first saw her and later told me the results of that were why she carried on sending me for MRI/CT scans and eventually a lumbar puncture.
For the plantar reflex she used a bic pen with the top on, running it down the sole of my feet.
posted by selton at 9:48 AM on July 12, 2010
For the plantar reflex she used a bic pen with the top on, running it down the sole of my feet.
posted by selton at 9:48 AM on July 12, 2010
I hate to say this but all of these symptoms could also be... getting older. Sometimes I have an eye spasm or weird aches/sensations very much like you experienced but have not been diagnosed with MS (*knock on wood*). I'm also not so emotional or full of piss and vinegar as I was, things that used to elicit a passionate response fell away, and being an adult is tiring! At not much older than you and was surprised at how quickly things fell away after college, even when you stay healthy. It's all very normal.
Go for the referral and evaluate if you need to be checked for depression. Start with the standard before going to "OMG I SAW IT ON THE WEB AND I HAZ CANCER!" mode. You're absolutely right to follow up on it, but don't convince yourself you're dying until someone hands you that black card. You'll only make yourself miserable and possibly sick.
posted by eatdonuts at 9:51 AM on July 12, 2010
Go for the referral and evaluate if you need to be checked for depression. Start with the standard before going to "OMG I SAW IT ON THE WEB AND I HAZ CANCER!" mode. You're absolutely right to follow up on it, but don't convince yourself you're dying until someone hands you that black card. You'll only make yourself miserable and possibly sick.
posted by eatdonuts at 9:51 AM on July 12, 2010
Is there a reason you're staying with that particular GP? Get a second opinion.
posted by roomthreeseventeen at 9:56 AM on July 12, 2010
posted by roomthreeseventeen at 9:56 AM on July 12, 2010
IANAD etc.
Another condition to consider (among the many possibilities) is lupus. CFIDS, Fibromyalgia, mayofacial pain disorder are all also things to consider.
I highly recommend that you write down in great detail all of the symptoms you have been experiencing over the years, after first reading about all the various conditions people have stated, (there may be symptoms listed that you have had, but not noted as being important, but then realize it may be). Then take this list of the symptoms you have experienced to your doctor and ask about the appropriate tests to find out waht is wrong. If s/he won't do them, then change doctors.
Best of luck to you.
posted by batikrose at 9:56 AM on July 12, 2010
Another condition to consider (among the many possibilities) is lupus. CFIDS, Fibromyalgia, mayofacial pain disorder are all also things to consider.
I highly recommend that you write down in great detail all of the symptoms you have been experiencing over the years, after first reading about all the various conditions people have stated, (there may be symptoms listed that you have had, but not noted as being important, but then realize it may be). Then take this list of the symptoms you have experienced to your doctor and ask about the appropriate tests to find out waht is wrong. If s/he won't do them, then change doctors.
Best of luck to you.
posted by batikrose at 9:56 AM on July 12, 2010
Seconding the eye doctor recommendation, based on my knowledge of those who got diagnosed early--the opthamologist knew right away that MS was likely. Also perhaps post on one of the many MS forums for more experienced advice.
posted by Potomac Avenue at 9:57 AM on July 12, 2010
posted by Potomac Avenue at 9:57 AM on July 12, 2010
Since there was an issue with your vision, it's likely that any other specialist you may see will want to know that you had your eyes checked out. So it won't set you back a huge amount of time to go get them checked out, and make sure they're fine.
At that point, you have further ammunition against the GP (unless you decide you want a better one who will be willing to listen--by the way, internists seem more interested in getting to the bottom of a mystery than a family doctor). You got a referral to this opthalmologist, which means that he'll send back notes/results to your GP. If *he* says, "Yes, these eyeballs are fine, but that's a very alarming symptom" it may help you get some more notice from the GP.
It may also help to discuss with the doctor that you think you're having neurological symptoms, they're really weird and alarming, they're progressing...without bringing up any particular neurological issue. If you're set on a self-diagnosis, it can really rub doctors the wrong way--but if you are simply trying to get help for your problems that are pretty scary, and you're open to whatever they DO find, it may make the doc take the problem more seriously.
posted by galadriel at 9:58 AM on July 12, 2010
At that point, you have further ammunition against the GP (unless you decide you want a better one who will be willing to listen--by the way, internists seem more interested in getting to the bottom of a mystery than a family doctor). You got a referral to this opthalmologist, which means that he'll send back notes/results to your GP. If *he* says, "Yes, these eyeballs are fine, but that's a very alarming symptom" it may help you get some more notice from the GP.
It may also help to discuss with the doctor that you think you're having neurological symptoms, they're really weird and alarming, they're progressing...without bringing up any particular neurological issue. If you're set on a self-diagnosis, it can really rub doctors the wrong way--but if you are simply trying to get help for your problems that are pretty scary, and you're open to whatever they DO find, it may make the doc take the problem more seriously.
posted by galadriel at 9:58 AM on July 12, 2010
I can't address the MS aspect, but am wondering if the reason your doctor is referring you to an opthalmologist is because he suspects an ocular migraine. I had one of these once: No pain, but a pattern that reminded me of the Microsoft Windows icon floating slowly around in color-shifting technicolored glory at the edge of my vision. Went straight to the eye doctor, and was told basically that these are like regular migraines, but occurring in your eye, they don't hurt, and generally are not of huge concern.
posted by Ys at 10:01 AM on July 12, 2010
posted by Ys at 10:01 AM on July 12, 2010
If not 'depression' then the cumulative effects of stress and/or anxiety.
See the ophthalmologist to set your mind at ease, get the reflex selton linked to looked at, and then stop Googling this stuff.
Try to go outside yourself -- demanding volunteer work or similar is a good way to get out of this sort of cycle. A lot of this sounds like what eatdonuts said -- normal aging.
posted by kmennie at 10:03 AM on July 12, 2010
See the ophthalmologist to set your mind at ease, get the reflex selton linked to looked at, and then stop Googling this stuff.
Try to go outside yourself -- demanding volunteer work or similar is a good way to get out of this sort of cycle. A lot of this sounds like what eatdonuts said -- normal aging.
posted by kmennie at 10:03 AM on July 12, 2010
MS is usually a diagnosis of exclusion.
This means the physician needs to rule everything else out first (vitamin B12 deficiency, migraine, depression, etc). So it usually takes a while to diagnose.
A referral to an ophthalmologist (even an optometrist first) is usual if you present with visual symptoms, since there are many more issues with the eyes and eyes and brain that are more common than MS.
I'd say see the ophthalmologist and present your entire history, including family history, current and past meds, etc. and go from there. If the ophthalmologist suspects MS, a number of tests may be done before an MRI including a thorough physical, blood work and evoked potentials. You'd then be sent on to a neurologist based on the results of those tests.
Of course all of this varies depending on where you are, but this seems to be a fairly common way to go about it where I am (Canada).
posted by narcissus_and_ambrosia at 10:08 AM on July 12, 2010 [1 favorite]
This means the physician needs to rule everything else out first (vitamin B12 deficiency, migraine, depression, etc). So it usually takes a while to diagnose.
A referral to an ophthalmologist (even an optometrist first) is usual if you present with visual symptoms, since there are many more issues with the eyes and eyes and brain that are more common than MS.
I'd say see the ophthalmologist and present your entire history, including family history, current and past meds, etc. and go from there. If the ophthalmologist suspects MS, a number of tests may be done before an MRI including a thorough physical, blood work and evoked potentials. You'd then be sent on to a neurologist based on the results of those tests.
Of course all of this varies depending on where you are, but this seems to be a fairly common way to go about it where I am (Canada).
posted by narcissus_and_ambrosia at 10:08 AM on July 12, 2010 [1 favorite]
Get another doctor or go directly to a neurologist. You don't work so you can get on this today and it's the only way you're going to get an answer.
posted by fshgrl at 10:08 AM on July 12, 2010
posted by fshgrl at 10:08 AM on July 12, 2010
I also recommend asking aggressively for a referral to a neurologist.
I have three friends with these sorts of diseases (MS, lupus, and a thyroid thing actually). The MS & lupus friends had to go through TEN FUCKING YEARS, starting at about your age, of "there-there"s and prescriptions for anti-depressants. Finally their symptoms got so unmistakable that they were diagnosed and started getting proper treatment.
The thyroid thing came to a head in a mere 12 months of batshitinsanity, that was utterly unnecessary and ruined relationships and a lot more.
(And did any of their MDs apologize for being patronizing jerks? Guess!)
I have a lot of theories on why women's health issues are so often dismissed but whatever the reason, it happens a lot. There have been some good threads in AskMe that discussed this, and how to work around it, so it might be worth rooting around and finding them.
Being dismissed by people you depend on for your wellbeing is incredibly disempowering, and if you can find some support of some sort, even a therapist, it might help you stay self-confident enough that you can demand the health care that you need. You really WON'T get the care you need if start thinking you're being a pest or maybe you are making a big deal out of not so much, and it's not all that bad, etc. etc.- all those things that happen when you're battling alone against a big system.
It may be that it isn't anything serious, but you really need and deserve to have your concerns taken seriously.
Also, in my friends' experience, going to someone in a metropolis made worlds of difference in their diagnoses and treatment quality (versus their smaller community care). Even better if you can find someone at or affiliated with a research hospital.
posted by small_ruminant at 10:11 AM on July 12, 2010 [8 favorites]
I have three friends with these sorts of diseases (MS, lupus, and a thyroid thing actually). The MS & lupus friends had to go through TEN FUCKING YEARS, starting at about your age, of "there-there"s and prescriptions for anti-depressants. Finally their symptoms got so unmistakable that they were diagnosed and started getting proper treatment.
The thyroid thing came to a head in a mere 12 months of batshitinsanity, that was utterly unnecessary and ruined relationships and a lot more.
(And did any of their MDs apologize for being patronizing jerks? Guess!)
I have a lot of theories on why women's health issues are so often dismissed but whatever the reason, it happens a lot. There have been some good threads in AskMe that discussed this, and how to work around it, so it might be worth rooting around and finding them.
Being dismissed by people you depend on for your wellbeing is incredibly disempowering, and if you can find some support of some sort, even a therapist, it might help you stay self-confident enough that you can demand the health care that you need. You really WON'T get the care you need if start thinking you're being a pest or maybe you are making a big deal out of not so much, and it's not all that bad, etc. etc.- all those things that happen when you're battling alone against a big system.
It may be that it isn't anything serious, but you really need and deserve to have your concerns taken seriously.
Also, in my friends' experience, going to someone in a metropolis made worlds of difference in their diagnoses and treatment quality (versus their smaller community care). Even better if you can find someone at or affiliated with a research hospital.
posted by small_ruminant at 10:11 AM on July 12, 2010 [8 favorites]
Look, I suffer from depression and anemia and allergies and all kinds of stuff that are going to be thrown as answers to your list of symptoms. Blurred vision, fatigue, extreme heat sensitivity? Difficult to diagnose does not equal hypochondriac. The difference is I think your doc is not taking it seriously enough - I don't have any opinion as to what kind of specialist you should go to, but find another GP. Ask local women for a ref to a GP they love.
posted by 8dot3 at 10:28 AM on July 12, 2010 [1 favorite]
posted by 8dot3 at 10:28 AM on July 12, 2010 [1 favorite]
My GP referred me to an ophthalmologist when I had a problem with my vision. The ophthalmologist told me my glasses prescription was no good and wrote me a new one.
I actually had optic neuritis.
It sounds like your vision issue has resolved itself? Combined with your past issues, I would skip the ophthalmologist for now & see a neurologist.
Having said that, you've got a broad range of symptoms there that could be lots of things or nothing. All of the things you listed could be symptoms of MS, or they could not. If it's concerning you it is definitely worth pursuing.
Either go back to your current GP and restate your concerns clearly and request at least having blood work done or find a new GP who isn't so dismissive of your concerns, and tell them everything you have told us. Maybe you can ask around and see if you can find a local doctor with an interest in MS
(I've just reread some of your post and see that your blood work is normal. I assume that has ruled out other possible causes of your symptoms, such as thyroid conditions?)
He then said that would not be an early symptom of MS; instead I would have trouble walking or gripping things.
This is just wrong. Personally, I would not be seeing that doctor again.
As mediareport mentioned, bypassing a GP and going directly to a neurologist may not be an option as you probably will not be seen without a referral. This is certainly the case where I am (Australia).
Fatigue is often one of the least well understood & managed symptoms of MS, by doctors as well as patients. Actually, it's can be a difficult issue whatever the cause is. Please know your own body & pace yourself, if you know certain activities knock you out more than others, avoid what you can or make allowances knowing that you need recovery time.
Best of luck.
posted by goshling at 10:53 AM on July 12, 2010 [1 favorite]
I actually had optic neuritis.
It sounds like your vision issue has resolved itself? Combined with your past issues, I would skip the ophthalmologist for now & see a neurologist.
Having said that, you've got a broad range of symptoms there that could be lots of things or nothing. All of the things you listed could be symptoms of MS, or they could not. If it's concerning you it is definitely worth pursuing.
Either go back to your current GP and restate your concerns clearly and request at least having blood work done or find a new GP who isn't so dismissive of your concerns, and tell them everything you have told us. Maybe you can ask around and see if you can find a local doctor with an interest in MS
(I've just reread some of your post and see that your blood work is normal. I assume that has ruled out other possible causes of your symptoms, such as thyroid conditions?)
He then said that would not be an early symptom of MS; instead I would have trouble walking or gripping things.
This is just wrong. Personally, I would not be seeing that doctor again.
As mediareport mentioned, bypassing a GP and going directly to a neurologist may not be an option as you probably will not be seen without a referral. This is certainly the case where I am (Australia).
Fatigue is often one of the least well understood & managed symptoms of MS, by doctors as well as patients. Actually, it's can be a difficult issue whatever the cause is. Please know your own body & pace yourself, if you know certain activities knock you out more than others, avoid what you can or make allowances knowing that you need recovery time.
Best of luck.
posted by goshling at 10:53 AM on July 12, 2010 [1 favorite]
The ophthalmologist will be able to look at your optic nerve by dilating your eyes. My understanding is that if one has MS the demyelinating nerves will be visible so this is a reasonable place to start. So going to an ophthalmologist is a sensible next step - it was how a good friend of mine's MS diagnosis was made. Good luck sorting out what's going on!
posted by leslies at 11:14 AM on July 12, 2010
posted by leslies at 11:14 AM on July 12, 2010
Definitely see the ophthalmologist. My best friend was recently diagnosed with MS and her first symptom was optic neuritis, diagnosed by an opthalmologist. Depending on what your eye doctor can find out, they might be willing to refer you to a neurologist, but at the very least you have another opinion about what you experienced.
If it is MS, be prepared for a long wait before the final diagnosis. There have to be two well-documented "relapses," or episodes with symptoms present, separated by at least one month, and there must be more than one lesion on the brain and spinal cord, etc. Ruling out other possible causes can take a long time and require a lot of tests.
Be sure to contact your GP as soon as you start experiencing a new/different symptom, especially related to vision or tingling/numbness. If you haven't, please do tell your GP about the numbness you experienced. No need to make a separate appointment, but if you happen to be there for something, bring it up. You can frame it as just being curious about potential causes (since you're not experiencing it now), but it might be enough to prompt your GP to rethink getting you an MRI.
posted by SugarAndSass at 12:26 PM on July 12, 2010
If it is MS, be prepared for a long wait before the final diagnosis. There have to be two well-documented "relapses," or episodes with symptoms present, separated by at least one month, and there must be more than one lesion on the brain and spinal cord, etc. Ruling out other possible causes can take a long time and require a lot of tests.
Be sure to contact your GP as soon as you start experiencing a new/different symptom, especially related to vision or tingling/numbness. If you haven't, please do tell your GP about the numbness you experienced. No need to make a separate appointment, but if you happen to be there for something, bring it up. You can frame it as just being curious about potential causes (since you're not experiencing it now), but it might be enough to prompt your GP to rethink getting you an MRI.
posted by SugarAndSass at 12:26 PM on July 12, 2010
Not to dismiss any of your symptoms as I have known people with MS, but the bath incident reminds me of an ocular migraine I had a few years ago - exactly the same description. I very rarely get migraine and that has been the only time I have had the ocular migraine. A very odd experience that came on after running a 12K. Of course I thought I had a tumour, but I was referred to an opthalmologist. Perhaps that will be some reassurance, but I do support the answers to be more aggressive in getting the root of the problem. Good luck.
posted by poissonrouge at 12:41 PM on July 12, 2010
posted by poissonrouge at 12:41 PM on July 12, 2010
Another condition to consider (among the many possibilities) is lupus. CFIDS, Fibromyalgia, mayofacial pain disorder are all also things to consider.
I'm a Lupus patient, and several years ago I suddenly developed very strange and (to me) very frightening symptoms. Mainly, I experienced tingling (but not numbness) in one leg. Then the tingling progressed to one half of my face (on the same side as the affected leg). I made an emergency appointment with my rheumatologist and told him of my MS fears. He had me stand up, first on one leg, then the other and gave me a quick shove each time. Then he had me extend both arms with palms facing him and he pressed against my hands with his, telling me to resist his push. Next he had me splay the fingers of each hand and told me to resist as he squeezed them together. He then said "We can never rule anything absolutely out, but I don't think it's MS" and sent me on my way. I felt like I was being dismissed and my symptoms not being taken seriously, so I called the local chapter of the MS Society and talked to a rep. She told me that the hand pushing and one-foot-standing my rheumy had done were actually tests to look for weaknesses in something or other (I forget the technical jargon) and were typical preliminary tests to determine whether an MRI was necessary. Anyway, that was a long story to illustrate some of the (seemingly unrelated) tests a doctor who is truly searching for MS might use. (My tingling was later discovered to be vasculitis, a manifestation of Lupus.)
Not to frighten you unnecessarily, but I recently read Terri Garr's (an actress with MS) autobiography, and some of your symptoms match hers, particularly hot baths and physical exertion bringing on symptoms. Please try to get a second opinion (maybe your ophthamologist can give you a referral to a neurologist?) and keep pursuing this until you get a definitive answer of some sort, and not just a shrugging "I don't think it's anything..." response. Best of luck to you, please keep us posted.
posted by Oriole Adams at 12:44 PM on July 12, 2010
I'm a Lupus patient, and several years ago I suddenly developed very strange and (to me) very frightening symptoms. Mainly, I experienced tingling (but not numbness) in one leg. Then the tingling progressed to one half of my face (on the same side as the affected leg). I made an emergency appointment with my rheumatologist and told him of my MS fears. He had me stand up, first on one leg, then the other and gave me a quick shove each time. Then he had me extend both arms with palms facing him and he pressed against my hands with his, telling me to resist his push. Next he had me splay the fingers of each hand and told me to resist as he squeezed them together. He then said "We can never rule anything absolutely out, but I don't think it's MS" and sent me on my way. I felt like I was being dismissed and my symptoms not being taken seriously, so I called the local chapter of the MS Society and talked to a rep. She told me that the hand pushing and one-foot-standing my rheumy had done were actually tests to look for weaknesses in something or other (I forget the technical jargon) and were typical preliminary tests to determine whether an MRI was necessary. Anyway, that was a long story to illustrate some of the (seemingly unrelated) tests a doctor who is truly searching for MS might use. (My tingling was later discovered to be vasculitis, a manifestation of Lupus.)
Not to frighten you unnecessarily, but I recently read Terri Garr's (an actress with MS) autobiography, and some of your symptoms match hers, particularly hot baths and physical exertion bringing on symptoms. Please try to get a second opinion (maybe your ophthamologist can give you a referral to a neurologist?) and keep pursuing this until you get a definitive answer of some sort, and not just a shrugging "I don't think it's anything..." response. Best of luck to you, please keep us posted.
posted by Oriole Adams at 12:44 PM on July 12, 2010
While I do agree that finding a second opinion and seeing an eye doctor are prudent courses of action, I thought I should let you know that I had the EXACT symptoms that you described above when you were in the bath. The distorted vision scared the crap out of me, and I went straight to my eye doc. She was able to diagnosis me with optical migraines (you can google for this, there are lots of sites). They are entirely harmless, do not always come with headaches, and can causes exactly the symptom you describe. So, don't stress out too much. Your symptoms might be something entirely harmless (but still get in to see the eye doc, who can tell you for sure).
posted by I_love_the_rain at 2:41 PM on July 12, 2010 [1 favorite]
posted by I_love_the_rain at 2:41 PM on July 12, 2010 [1 favorite]
Your symptoms could be symptomatic of many things, some not worth worrying about and some otherwise. They could be neurological, optical, something else or due to a mix of causes -- which is why it is particularly vital to have a decent internist on board to manage the guesswork (and "guesswork" it often is) with respect to which specialists to see and in what priority. From the way you describe your GP, the smartest thing you could probably do is find a new and better one.
posted by SuzB at 3:03 PM on July 12, 2010 [1 favorite]
posted by SuzB at 3:03 PM on July 12, 2010 [1 favorite]
This thread is closed to new comments.
posted by brevator at 9:29 AM on July 12, 2010 [1 favorite]