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Lesions on MRI, mild symptoms, no diagnosis
I am a 51 yr old female and have struggled with short term memory issues since late 30's. This became worse 2 years ago to the point that I had scheduled an appointment to see my Dr. and not even remembered that I had the appointment when they called me to confirm the appointment. I was also concerned because I was achey especially in my lower back where I knew I had disc desiccation. Doc called it premature dementia. I also discovered that I had extreme difficulty comprehending when reading and learning new things - I have always been a quick study and great reader (even dry technical material). CT of brain done and there is significant white matter lesions consistent with micro ischemic vascular blockages (usually due to high blood pressure) not consistent with patient's age. I didn't have and hadn't had high blood pressure. Radiologist suggests MRI to rule out other causes. MRI done September 2011 and I have a wonderfully symetrical pattern of lesions in the white matter. Another MRI done August 2012 is identical so no changes over the year. CT of back was done also and later an MRI confirming disc desiccation and a referral to a pain specialist.
After the CT I was referred to a neuro who did the quick in clinic and ordered the MRI and referred me for cognitive testing. Cognitive testing was a breeze so long as there were no distractions at all. Simple office noise that could be heard through the walls caused me difficulty; however I still passed tests with flying colors. NeuroPsych says I did excellent in a controlled environment and he suspects that in an uncontrolled environment I would struggle significantly - he's right. Neuro won't even follow up with me until she receives all tests back (two months down the road), so I ask for referral to a different Neuro. New neuro - oh...you're not blind, you don't have to use a cane, not likely MS; funny that you have these lesions though and no history of high blood pressure. What I did find is a significant deficiency in your D3 levels. That was December 2011 - she prescribed 20k of D3 daily along with 1000 B12 for 3 weeks then drop down to 5k of D3 and have blood tested. Perfect I think I was mid 60's on my D3. So now maintain at 5k, but within a month I was very sick and had dropped back down to low 30''s in my D3. Lots of trial and error since and I've not yet hit the 60's again. Migraines, nausea and fatigue got worse. July 4 2012 I wretched so hard that I had a starburst pain in my chest that sent electric shock feeling and burning sensation all the way to my fingertips. Back to my general physician who does a CT of my tummy and finds a small umbilicle hernia - not to worry about he says. Come back for a follow up in 6 months. Meanwhile pain specialist gives me some phenergen for my nausea. I had pain running up my head behind left ear in the area of the greater occipital nerve. (confirmed by pain specialist) I look up cofactors for D3 and find out that my magnesium levels have probably been depleted. I talk to neuro about that and she says yes you probably need some magnesium but I don't know how much or what kind. I figure out what I need, type and how much, and start taking that each day. Migraines and nausea are minimal now; however I've now gained about 20 lbs.
After the CT I was referred to a neuro who did the quick in clinic and ordered the MRI and referred me for cognitive testing. Cognitive testing was a breeze so long as there were no distractions at all. Simple office noise that could be heard through the walls caused me difficulty; however I still passed tests with flying colors. NeuroPsych says I did excellent in a controlled environment and he suspects that in an uncontrolled environment I would struggle significantly - he's right. Neuro won't even follow up with me until she receives all tests back (two months down the road), so I ask for referral to a different Neuro. New neuro - oh...you're not blind, you don't have to use a cane, not likely MS; funny that you have these lesions though and no history of high blood pressure. What I did find is a significant deficiency in your D3 levels. That was December 2011 - she prescribed 20k of D3 daily along with 1000 B12 for 3 weeks then drop down to 5k of D3 and have blood tested. Perfect I think I was mid 60's on my D3. So now maintain at 5k, but within a month I was very sick and had dropped back down to low 30''s in my D3. Lots of trial and error since and I've not yet hit the 60's again. Migraines, nausea and fatigue got worse. July 4 2012 I wretched so hard that I had a starburst pain in my chest that sent electric shock feeling and burning sensation all the way to my fingertips. Back to my general physician who does a CT of my tummy and finds a small umbilicle hernia - not to worry about he says. Come back for a follow up in 6 months. Meanwhile pain specialist gives me some phenergen for my nausea. I had pain running up my head behind left ear in the area of the greater occipital nerve. (confirmed by pain specialist) I look up cofactors for D3 and find out that my magnesium levels have probably been depleted. I talk to neuro about that and she says yes you probably need some magnesium but I don't know how much or what kind. I figure out what I need, type and how much, and start taking that each day. Migraines and nausea are minimal now; however I've now gained about 20 lbs.
Thanks for your comments. I'd be very happy to learn toward "not" MS. My post was long and off the cuff so certain I left many things out. I've had the cardio workup and negative. I've also been ruled out for RA, Lupus and Lyme (thought I did get the "you live in the south" reply when I asked to be tested for Lyme). It's frustrating to me that my neuro originally said "probably not" and now is saying "certainly could be". More frustrating is that she's ready to start some serious medication without being positive about the DX. I'll keep looking for answers. The tracker on this website is wonderful and will help I'm certain, though I wish I could add little boxes for things I experience and medications I take that are not on the list.
Read the latest McDonald Criteria for Dx of MS, you do not need 3 CIS plus LP plus positive MRI.
I don't think you have MS. You need to read the patient information sheets very carefully! neurontin (your gaga drug) is for pain and it takes a few days to get used to it.......so don't go off of it abruptly.......if you adjust slowly to it (as you have by taking it at night) then you need to go off of it slowly.
baclofen might help spasms, that is what many of us take, we are, however not doctors and cannot diagnose or recommend. Some people take weeks and weeks to adjust to these two drugs but they work very well.
I do not know what your lesions mean, particularly how you describe them. Your LP could or could not confirm as 10% of MS patients have no "O" bands which is what you are looking for (I have none and have MS)
Fibro is an option however neithre MS or Fibro probably caused your attack while driving. I'd be inclined to see a cardiologist for a FULL work up to rule out that particular vein of thought.
There are over 20 other diseases that mimic MS and your doctors need to rule those out first. Many mimic it almost perfectly, among the ones you need to rule out are lupus and lyme (the lyme has to be a test involving at least western block.
People have MS other than the blind and those using canes. I would have been insulted although the last neuro that I kicked to the curb told me I was alzheimer's headed, had fibro, couldn't have ms because I lived in the south and didn't care what my eye doctor said (he used *$#@) words) so I took the MRI he ordered to yet another neuro (we are up to 4 now and a span of probably 8 yrs) and he read the MRI, read my letters from my eye doctor (CIS) did about 5 neuro tests, ordered tons of blood work as a back up but told me I definitely had MS (note same MRI idiot neuro looked at)
So, you may be in for a long haul, but that you get 3-4 days warming does not sound like MS. I wish you much luck and you may be a long while figuring this out. Due to your symptoms, if it were me, I'd be looking for a cardiologist and a really good eye doctor first, then a rheumatologist (fibro feel) and a neuro who is passionate about MS. It may take you a while to find this combination, hang in there.......and welcome to our corner of the web
I don't think you have MS. You need to read the patient information sheets very carefully! neurontin (your gaga drug) is for pain and it takes a few days to get used to it.......so don't go off of it abruptly.......if you adjust slowly to it (as you have by taking it at night) then you need to go off of it slowly.
baclofen might help spasms, that is what many of us take, we are, however not doctors and cannot diagnose or recommend. Some people take weeks and weeks to adjust to these two drugs but they work very well.
I do not know what your lesions mean, particularly how you describe them. Your LP could or could not confirm as 10% of MS patients have no "O" bands which is what you are looking for (I have none and have MS)
Fibro is an option however neithre MS or Fibro probably caused your attack while driving. I'd be inclined to see a cardiologist for a FULL work up to rule out that particular vein of thought.
There are over 20 other diseases that mimic MS and your doctors need to rule those out first. Many mimic it almost perfectly, among the ones you need to rule out are lupus and lyme (the lyme has to be a test involving at least western block.
People have MS other than the blind and those using canes. I would have been insulted although the last neuro that I kicked to the curb told me I was alzheimer's headed, had fibro, couldn't have ms because I lived in the south and didn't care what my eye doctor said (he used *$#@) words) so I took the MRI he ordered to yet another neuro (we are up to 4 now and a span of probably 8 yrs) and he read the MRI, read my letters from my eye doctor (CIS) did about 5 neuro tests, ordered tons of blood work as a back up but told me I definitely had MS (note same MRI idiot neuro looked at)
So, you may be in for a long haul, but that you get 3-4 days warming does not sound like MS. I wish you much luck and you may be a long while figuring this out. Due to your symptoms, if it were me, I'd be looking for a cardiologist and a really good eye doctor first, then a rheumatologist (fibro feel) and a neuro who is passionate about MS. It may take you a while to find this combination, hang in there.......and welcome to our corner of the web
The pain I was experiencing in my lower back was accompanied by stiffness in my hips and knees especially when rising from a chair or getting up in the morning. After moving about a bit it would subside somewhat. Somedays I felt like I needed to use my hands to make my legs start moving. Pain specialist does a steroid injection in lower back and that helps for about 2 months and then pain comes back and is now accompanied by aching shoulders. Prescribed gabapentin, but it makes me too groggy to get up and go to work so I didn't take it more than a day. Switch to meloxicam which gives me some mobility. Neck and should pain also start developing mid 2012 along with the migraines and MRI is done of neck. I am told that my shoulder muscles are spasming to the point that they're removing the curviture from cervical spine which is pinching the greater occipital nerve and could be the cause of migraines. Muscle relaxers prescribed and I experience slightly moderate relief but major constipation. Meanwhile I'm still seeing that neuro and dealing with the D3 issue. Reporting to both physicians everything just in case there are correlations.
I've struggled with rapidly worsening eye sight, mostly blurring; migraines, vomiting for no apparent reason (mornings); restless legs (can't sit still and watch tv); itching and swelling of my hands and feet. I want to know what's wrong with me. General physician wants me to get a 2nd opinion from another neuro but I haven't even really gotten a 1st opinion.
Still seeing that neuro to get the D3 straight. Two weeks ago I tell her about the 2nd opinion and ask outright "so you said you don't think this is MS, what might it be?" She says to me "I said that?" she flips open my chart back to my MRI and says "This could be MS. You just don't exhibit any major symptoms - you've been blind for any period, you don't need a cane to walk" She says "we can start interferon injections if you like, but you need to know that I will still treat you with vitamin D. That's how I treat all my MS patients." I leave wondering, "could it be?" She had previously given me the impression that it was not. Last week she fills out my FMLA papers saying I have severe migraines that can occur a couple of times a week requiring me to be bedridden, but checks the box that says no follow-up treatment, no reduced work schedule, etc., is needed. No mention of MS or white matter lesions.
Three days ago I was in significant pain and decided I've give that gabapentin the pain specialist prescribed a try so I took one at bedtime, knowing it's a drug that works to calm nerves. Low and behold most of my pain was gone or became a dull ache and I was moving about much easier. Out of curiosity I google gabapentin and MS and find that it's commonly used to treat pain in MS because the pain is a result of the damaged myelin and the nerve signals not being routed correctly as a result. So, I'm asking myself "Did I just treat my MS symptoms?" I've taken the gabapentin 3 days now and today I have some stiffness in my neck, sciatica in my left leg (been present for years), my feet are a bit swollen and my hands itch. Other than that I am groggy as can be and know that I can't function like this at work. I couldn't even drive to work and I've been awake 6 hours.
That second opinion - I know that in order to be diagnosed with MS you are supposed to have the positive finding on MRI, should have a spinal tap that's positive and/or 3 clinically isolated syndromes. I know that spinal taps aren't always positive and the patients can still have MS. I know that identifying 3 clinically isolated syndromes could take months and years based on my "mild" symptoms, and I've already invested almost 2 years since the formal journey began. I'm already paying one neuro and don't want to pay another. I'm not ready to entirely give up on the 1st.
I have the MRI and a cyclical occurrence of symptoms raining from poor memory, worsening eyesight, RLS, aches and pains for no reason, sharp jabs in my eye, itching and burning. But when I say cyclical sometimes this is a couple of days every week or maybe every two weeks or it may be a week long and I"m ok for a couple days then here it comes again. I'm functional - I go to work because I have to. My house looks like hell because by the time I get home I am exhausted. I know after 3 or 4 days that it's coming again - I call it crashing because I can feel it coming. The ladies at work said they can always tell because I get real giddy the day before the crash starts. I would describe that giddy thing as happy to the point of feeling child-like, and then it begins.
I live in East Texas and would like to see a bona fide specialist who deals with MS but can't seem to find one on my own, not even in the Dallas area. I would like input as to whether this sounds like MS to you. I would also like to know if there are others out there with MS who's symptoms are "mild" yet valid MS symptoms. I want to know how you deal with the ongoing symptoms and work. I feel as though I am losing control of my life and my ability to maintain financial stability with this affecting my work.
I apologize for the disorganization and will be very appreciative of any input / information received.
I've struggled with rapidly worsening eye sight, mostly blurring; migraines, vomiting for no apparent reason (mornings); restless legs (can't sit still and watch tv); itching and swelling of my hands and feet. I want to know what's wrong with me. General physician wants me to get a 2nd opinion from another neuro but I haven't even really gotten a 1st opinion.
Still seeing that neuro to get the D3 straight. Two weeks ago I tell her about the 2nd opinion and ask outright "so you said you don't think this is MS, what might it be?" She says to me "I said that?" she flips open my chart back to my MRI and says "This could be MS. You just don't exhibit any major symptoms - you've been blind for any period, you don't need a cane to walk" She says "we can start interferon injections if you like, but you need to know that I will still treat you with vitamin D. That's how I treat all my MS patients." I leave wondering, "could it be?" She had previously given me the impression that it was not. Last week she fills out my FMLA papers saying I have severe migraines that can occur a couple of times a week requiring me to be bedridden, but checks the box that says no follow-up treatment, no reduced work schedule, etc., is needed. No mention of MS or white matter lesions.
Three days ago I was in significant pain and decided I've give that gabapentin the pain specialist prescribed a try so I took one at bedtime, knowing it's a drug that works to calm nerves. Low and behold most of my pain was gone or became a dull ache and I was moving about much easier. Out of curiosity I google gabapentin and MS and find that it's commonly used to treat pain in MS because the pain is a result of the damaged myelin and the nerve signals not being routed correctly as a result. So, I'm asking myself "Did I just treat my MS symptoms?" I've taken the gabapentin 3 days now and today I have some stiffness in my neck, sciatica in my left leg (been present for years), my feet are a bit swollen and my hands itch. Other than that I am groggy as can be and know that I can't function like this at work. I couldn't even drive to work and I've been awake 6 hours.
That second opinion - I know that in order to be diagnosed with MS you are supposed to have the positive finding on MRI, should have a spinal tap that's positive and/or 3 clinically isolated syndromes. I know that spinal taps aren't always positive and the patients can still have MS. I know that identifying 3 clinically isolated syndromes could take months and years based on my "mild" symptoms, and I've already invested almost 2 years since the formal journey began. I'm already paying one neuro and don't want to pay another. I'm not ready to entirely give up on the 1st.
I have the MRI and a cyclical occurrence of symptoms raining from poor memory, worsening eyesight, RLS, aches and pains for no reason, sharp jabs in my eye, itching and burning. But when I say cyclical sometimes this is a couple of days every week or maybe every two weeks or it may be a week long and I"m ok for a couple days then here it comes again. I'm functional - I go to work because I have to. My house looks like hell because by the time I get home I am exhausted. I know after 3 or 4 days that it's coming again - I call it crashing because I can feel it coming. The ladies at work said they can always tell because I get real giddy the day before the crash starts. I would describe that giddy thing as happy to the point of feeling child-like, and then it begins.
I live in East Texas and would like to see a bona fide specialist who deals with MS but can't seem to find one on my own, not even in the Dallas area. I would like input as to whether this sounds like MS to you. I would also like to know if there are others out there with MS who's symptoms are "mild" yet valid MS symptoms. I want to know how you deal with the ongoing symptoms and work. I feel as though I am losing control of my life and my ability to maintain financial stability with this affecting my work.
I apologize for the disorganization and will be very appreciative of any input / information received.
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