pantaleon
04-22-2008, 07:18 PM
Hello,
I posted the following on the Lyme disease board, and people were asking if I've been tested for MS. I had a spinal tap about 9 months ago when symptoms started (completely normal) and an MRI of the brain in August 2007 which I was told at the time was normal. When I changed neuros this month they told me the MRI was actually technically abnormal because there was "a spot on the left side" but they weren't worried about it. The neuro seemed a little intrigued about the pins/needles only happening in the hot shower when I rotate my shoulder and ordered a c-spine, t-spine and brain MRI...then changed her mind and cancelled them all. An "evoked response" test for the eyes was normal.
Can someone (pretty please) tell me if this sounds enough like early MS to warrant further investigation? I feel like the hospital has been dismissing a lot of my symptoms because I'm "too young" or -- my favorite -- "look too good" to have a "real" illness. I've had my body for 22 years, and believe me, I know something is wrong. It hasn't gotten better in 10 months, and I would really, really appreciate any input on where to go from here. Thanks!
<i>I'm 22 years old, female. I've been sick since July 2007. It started very suddenly overnight with heart palpitations, dizziness and muscle twitching. Over the next week or two I noticed muscle aches, prolonged dizziness/lightheadedness, muscle twitches and cramps, low fevers (99-ish) and very pronounced fatigue. The fatigue and fevers seemed to get better slowly over the summer but the dizziness and muscle aches in the neck and shoulders persisted along with some joint pain mostly in the wrists/fingers/elbows. Muscle and joint pain seem to wax and wane in roughly month-long cycles. Dizziness/woozy feeling comes whenever/wherever but seems to get worse with heat or sunlight and at the and of a period of neck/shoulder pain. I now get very noticeable (though not really painful) pins and needles in the hands during a hot shower. This disappears about 5-10 minutes after cooling down.
Doctors haven't been much of a help to me. I've had three blood tests for Lyme (negative) along with a lot of autoimmune stuff and no abnormal results. Consequently I've been told I have anything from generalized anxiety, fibromyalgia, chronic fatigue, depression, irregular migraines, or just plain full-blown hypochondria. I don't believe in the theory that it's all in my head, and my family and friends who know me well know that something is wrong. Enough random people told me my symptoms "sound like Lyme" that I sought out an infectious disease doc. in Longmeadow MA who thinks I have Lyme in spite of negative test results....</i>
I posted the following on the Lyme disease board, and people were asking if I've been tested for MS. I had a spinal tap about 9 months ago when symptoms started (completely normal) and an MRI of the brain in August 2007 which I was told at the time was normal. When I changed neuros this month they told me the MRI was actually technically abnormal because there was "a spot on the left side" but they weren't worried about it. The neuro seemed a little intrigued about the pins/needles only happening in the hot shower when I rotate my shoulder and ordered a c-spine, t-spine and brain MRI...then changed her mind and cancelled them all. An "evoked response" test for the eyes was normal.
Can someone (pretty please) tell me if this sounds enough like early MS to warrant further investigation? I feel like the hospital has been dismissing a lot of my symptoms because I'm "too young" or -- my favorite -- "look too good" to have a "real" illness. I've had my body for 22 years, and believe me, I know something is wrong. It hasn't gotten better in 10 months, and I would really, really appreciate any input on where to go from here. Thanks!
<i>I'm 22 years old, female. I've been sick since July 2007. It started very suddenly overnight with heart palpitations, dizziness and muscle twitching. Over the next week or two I noticed muscle aches, prolonged dizziness/lightheadedness, muscle twitches and cramps, low fevers (99-ish) and very pronounced fatigue. The fatigue and fevers seemed to get better slowly over the summer but the dizziness and muscle aches in the neck and shoulders persisted along with some joint pain mostly in the wrists/fingers/elbows. Muscle and joint pain seem to wax and wane in roughly month-long cycles. Dizziness/woozy feeling comes whenever/wherever but seems to get worse with heat or sunlight and at the and of a period of neck/shoulder pain. I now get very noticeable (though not really painful) pins and needles in the hands during a hot shower. This disappears about 5-10 minutes after cooling down.
Doctors haven't been much of a help to me. I've had three blood tests for Lyme (negative) along with a lot of autoimmune stuff and no abnormal results. Consequently I've been told I have anything from generalized anxiety, fibromyalgia, chronic fatigue, depression, irregular migraines, or just plain full-blown hypochondria. I don't believe in the theory that it's all in my head, and my family and friends who know me well know that something is wrong. Enough random people told me my symptoms "sound like Lyme" that I sought out an infectious disease doc. in Longmeadow MA who thinks I have Lyme in spite of negative test results....</i>
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Bearygood
04-22-2008, 07:32 PM
Hi, pantaleon. In answer to your question about your sx warranting further investigation for MS, I'd say yes. In order to obtain an MS dx there has to be enough clinical data and to a large extent, an MS dx is one of excluding other things. Things to be tested for usually involve B12 deficiency, TB, Lyme and if warranted, AIDs. (I'm probably forgetting a few but those are big ones.) The criteria specialists go by is the McDonald Criteria (updated in 2005) -- this involves a column A and column B type of episodes/attacks (called exacerbations) and things like MRIs and even though many of us were dxed without one, a spinal tap (LP/lumbar puncture).
Your MRI was not entirely clear so between that and your sx, it is at least reason to be watched and at the very least, journal your sx. MS lesions usually have specific characteristics like shape and location but sometimes it takes a long time for lesions to show up. (Disease activity is what causes the lesions.) Lesions can appear on the brain, c-spine or t-spine. I wonder why your neuro cancelled the tests now -- did you ask? She may have felt that it was too soon for another MRI. Did she suggest where you go from here? Also, do you have a copy of the radiologist's report from your first MRI? If you do, it might be helpful to post the "impression" at the bottom of the report here. No guarantees, but it might help us give you more insight.
Your MRI was not entirely clear so between that and your sx, it is at least reason to be watched and at the very least, journal your sx. MS lesions usually have specific characteristics like shape and location but sometimes it takes a long time for lesions to show up. (Disease activity is what causes the lesions.) Lesions can appear on the brain, c-spine or t-spine. I wonder why your neuro cancelled the tests now -- did you ask? She may have felt that it was too soon for another MRI. Did she suggest where you go from here? Also, do you have a copy of the radiologist's report from your first MRI? If you do, it might be helpful to post the "impression" at the bottom of the report here. No guarantees, but it might help us give you more insight.
Bearygood
04-22-2008, 07:33 PM
By the way, A LOT of us look "too good to have MS". Most of my friends don't even know I have it.
april1848
04-22-2008, 07:37 PM
Hello! It's possible that you have MS but you could have a million other things too. I don't know much about Lyme Disease, but I believe some of the symptoms are similar.
If you want to rule out MS, the main tests are MRI of the brain and c-spine and spinal tap. MS can unfortunately take a long time to diagnose because it progresses so slowly, and there isn't really a sure-fire test to use. Basically you need to rule everything else out first. It's good that you already had an MRI of the brain, so they have something to compare future MRIs to. That's how I got diagnosed.
Many of the people here have been told the same stuff before diagnosis--anxiety, depression, fibro, hypochondria, etc. The main thing to remember is that you know your body better than anybody. It can be discouraging but you have to keep trying.
If they think you have Lyme disease, are you being treated for it? Perhaps you could get another opinion. You could also see an MS specialist, who would know the proper tests to rule it out or to diagnose you. I would suggest that if you have any doubts to pursue it further. People are getting diagnosed pretty young now, and 22 isn't out of the question. Just keep in mind that for some people, it takes months or years to get a diagnosis. I know this is discouraging, but do whatever you can to find an answer. The sooner you get the right diagnosis the sooner you can treat this.
If you have any questions or concerns about MS, you've found the right place. Good luck to you!
If you want to rule out MS, the main tests are MRI of the brain and c-spine and spinal tap. MS can unfortunately take a long time to diagnose because it progresses so slowly, and there isn't really a sure-fire test to use. Basically you need to rule everything else out first. It's good that you already had an MRI of the brain, so they have something to compare future MRIs to. That's how I got diagnosed.
Many of the people here have been told the same stuff before diagnosis--anxiety, depression, fibro, hypochondria, etc. The main thing to remember is that you know your body better than anybody. It can be discouraging but you have to keep trying.
If they think you have Lyme disease, are you being treated for it? Perhaps you could get another opinion. You could also see an MS specialist, who would know the proper tests to rule it out or to diagnose you. I would suggest that if you have any doubts to pursue it further. People are getting diagnosed pretty young now, and 22 isn't out of the question. Just keep in mind that for some people, it takes months or years to get a diagnosis. I know this is discouraging, but do whatever you can to find an answer. The sooner you get the right diagnosis the sooner you can treat this.
If you have any questions or concerns about MS, you've found the right place. Good luck to you!
Bearygood
04-22-2008, 07:42 PM
Hello! It's possible that you have MS but you could have a million other things too. I don't know much about Lyme Disease, but I believe some of the symptoms are similar.
The sx can mimic each other down to a 'T'. Even sometimes the lesions.
The sx can mimic each other down to a 'T'. Even sometimes the lesions.
hayleamiranda
04-22-2008, 07:47 PM
I definetely know what you mean! I am also 22 and I have been dealing with my symptoms since September of 2007. I think that is really takes time for them to diagnose you with SOMETHING but the key is finding the doctor who is going to test you for the right stuff. It has taken me this long to finally be able to see the MS Specialist (after seeing 6 other doctors). The only way that I am getting in to see him was because I took a trip to the ER and the doctor there thought it was necessary! Every time they would check for something in particular...they would find something else that didn't have anything to do with my pain. I had to BEG one of our neurologist to do an MRI of my brain just to rule out MS (because he told me I didn't even look bad enough to have MS) and when it came back with lesions...He said "Oh, you must really be hurting!" I fired him! Its like they don't believe people who aren't curled up in a ball giving up on life! I hope you feel better knowing that there are other people in your shoes because it did make me feel better. I wish you all of the luck in the world because I know how bad it sucks!!
Haylea
Haylea
pantaleon
04-22-2008, 07:51 PM
Thanks for getting back to me. I wound up getting the MRI's anyways because the doctor did not feel the need to tell me she had cancelled them until I showed up at the MRI facility and they wouldn't let me in. My parents drove me in because I am too dizzy to drive, and when they found out they took half a day off of work for nothing we got so mad they rescheduled me.
The part that makes this all really complicated is now I don't know how to get my results. I go to MGH and the heirarchy is really confusing. I think the dr. I actually saw can't authorize tests yet or someting, so someone older/more experienced (?) came in and told me they were going to do 3 MRI's. Then I think after she cancelled it someone else re-authorized it but I'm not exactly sure who. I have not been able to get a hold of anyone in the neurology department about this, only leave messages.
The doc who cancelled it never told me why or discussed further steps, I only heard secondhand from the receptionist at the MRI place that she "decided it wasn't necessary." Since I don't yet have a "real" illness I am considered something of a hypochondriac and not really afforded the luxury of communication :(
If/when I can manage to get results I will post them here.
I wonder why your neuro cancelled the tests now -- did you ask? She may have felt that it was too soon for another MRI. Did she suggest where you go from here? Also, do you have a copy of the radiologist's report from your first MRI? If you do, it might be helpful to post the "impression" at the bottom of the report here. No guarantees, but it might help us give you more insight.
The part that makes this all really complicated is now I don't know how to get my results. I go to MGH and the heirarchy is really confusing. I think the dr. I actually saw can't authorize tests yet or someting, so someone older/more experienced (?) came in and told me they were going to do 3 MRI's. Then I think after she cancelled it someone else re-authorized it but I'm not exactly sure who. I have not been able to get a hold of anyone in the neurology department about this, only leave messages.
The doc who cancelled it never told me why or discussed further steps, I only heard secondhand from the receptionist at the MRI place that she "decided it wasn't necessary." Since I don't yet have a "real" illness I am considered something of a hypochondriac and not really afforded the luxury of communication :(
If/when I can manage to get results I will post them here.
I wonder why your neuro cancelled the tests now -- did you ask? She may have felt that it was too soon for another MRI. Did she suggest where you go from here? Also, do you have a copy of the radiologist's report from your first MRI? If you do, it might be helpful to post the "impression" at the bottom of the report here. No guarantees, but it might help us give you more insight.
Bearygood
04-22-2008, 08:42 PM
Sorry, I'm a little confused. First, I was referring to the results of your first MRI that said you had a "spot". If you don't have the radiologist's report OR the films, you're certainly entitled to them! So, you ARE getting the new MRIs? And if so, are you getting them done at the same place as last time?
mary63
04-27-2008, 04:45 AM
Gosh YES- it is so frustrating feeling that the docs think you are neurotic because you aren't limping or dragging yourself along the ground!!!
I understand how you feel- the communication can be terrible. My neurologist ( whom i saw privately to speed things up)lost his dictation notes of my consultation and exam. He asked me to come in again so he could reexamine me - to make his notes accurate. I really can't see the point- it was very stressful the first time and its not like he can diagnose the disease from an exam anyway. I just got sent a reappointment letter but with the totally wrong name on it- not mine!. Hope you get some helpful feedback sooner rather than later....best wishes
I understand how you feel- the communication can be terrible. My neurologist ( whom i saw privately to speed things up)lost his dictation notes of my consultation and exam. He asked me to come in again so he could reexamine me - to make his notes accurate. I really can't see the point- it was very stressful the first time and its not like he can diagnose the disease from an exam anyway. I just got sent a reappointment letter but with the totally wrong name on it- not mine!. Hope you get some helpful feedback sooner rather than later....best wishes