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Dr. Hive and MS and other possibilities... - Weird Update #85

BlsdMama

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BlsdMama

BlsdMama

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So, what says the hive? Went for my EMG today.  Dr. (neuro) checked me out before testing and my reflexes on my right side (same side I'm dragging the foot sometimes) all crazy - very exaggerated.  Really the opposite I would have expected.  I admit it freaked me out some.  Didn't realize whatever this is is also affecting my right side/arm reflexes.

 

Could MS cause this?  Hoping so because the other brain stuff is far less pleasant to read about.

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BlsdMama

BlsdMama

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She only came in to check reflexes before the EMG - it was not our first official appointment.  Apparently due to insurance, your first appointment gets you X amount of time and subsequent appointments are considered follow-ups and get a lesser amount.

 

Because of this, she didn't want the EMG to be our first appointment but rather see me in office next Thursday instead.  She said she felt, after checking reflexes, that the EMG would be a waste of our time barking up the wrong tree and, as long as I didn't mind (the EMG was ordered by my family doctor) that she would rather spend the time with me in the office and schedule an MRIfor head/neck imaging.

 

Honestly it freaked me out.  Who shows up to an EMG, has a neuro check their reflexes and say, "Nope, not this.  Let's skip ahead and see you next week and we'll get an MRI scheduled."  There's nothing about that that screams, "Hey, you're just imagining this and all is well."  KWIM?  

 

 

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Ethel Mertz

Ethel Mertz

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Yes, MS can cause many symptoms, including messed up reflexes. The MRI will be helpful - especially to rule out the scary alternatives to MS. You don't, by any chance, have a previous MRI to compare do you? That would be helpful. Your doc may also suggest a lumbar puncture (spinal tap) to test spinal fluid. Keep in mind, it may take a while to get a definitive diagnosis.

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ThisIsTheDay

ThisIsTheDay

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So, what says the hive? Went for my EMG today.  Dr. (neuro) checked me out before testing and my reflexes on my right side (same side I'm dragging the foot sometimes) all crazy - very exaggerated.  Really the opposite I would have expected.  I admit it freaked me out some.  Didn't realize whatever this is is also affecting my right side/arm reflexes.

 

Could MS cause this?  Hoping so because the other brain stuff is far less pleasant to read about.

 

Dh says that on his weaker side, his reflexes are overexaggerated when the doctor checks them.

 

I"m sorry. It's a shitty disease, and not just because of the physical issues. Although, basically echoing what you said, this was a better diagnosis than a lot of things out there.

 

He got his diagnosis exactly ten years ago (this month, actually). He was having issues, and his doc eventually sent him for an MRI. It was quite a shock.

 

On the plus side, we had no idea what to expect with mobility, and he's doing better than we expected back then. And it affects everyone differently. There are lots of options for drugs, including some decent assistance. If I were to make any suggestion, it would be to encourage you to look for a nearby teaching hospital/university. I think it may be worth it, if not now, then later. 

 

:grouphug: :grouphug: :grouphug:

 

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melmichigan

melmichigan

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I'd give kudos to the neurologist for not putting you through a painful test that she didn't feel was necessary. I knew I'd found my neurologist 15 years ago when he didn't have the need to repeat EMG's for a third time, and instead sent me for MRI's. He was one of the top specialists in MS research in the country, sadly he passed away earlier this year. <<<hugs>>>

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Guest

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Good for the neuro! That's a good sign in terms of diagnosis, not wasting time checking boxes that aren't as conclusive or relevant after an exam.

 

Praying for you!

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BlsdMama

BlsdMama

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Getting things moved along, while certainly scary, is actually better medically.  The MRI will tell the doctor so much more than the EMG would have.  :grouphug: :grouphug:

 

 

Yeah, Jean, I think so too.  Thank you.  I was up last night a lot thinking about all the potentials and that just isn't conducive to health for mind or for body, kwim? 

 

Yes, MS can cause many symptoms, including messed up reflexes. The MRI will be helpful - especially to rule out the scary alternatives to MS. You don't, by any chance, have a previous MRI to compare do you? That would be helpful. Your doc may also suggest a lumbar puncture (spinal tap) to test spinal fluid. Keep in mind, it may take a while to get a definitive diagnosis.

 

Yeah, so I think my biggest worry is that I don't have any of the traditional MS symptoms that are nrmal with onset.  No tingling, no numbness, no vision, no bladder issues, no sexual dysfunction, none of them.  More overwhelming I think is that it isn't just my leg reflex but my arm as well.  That was news to me yesterday - hadn't realized it.  And my ability to flex my ankle has changed since I went to the family practice doctor a couple weeks ago.  I'm feeling a little overwhelmed by all of it and really hoping it's MS and not some of the other things that Dr. Google was ever so helpful with attaching to upper and lower hyperreflexia with foot drop.  Mostly just, please God, not ALS.

 

Dh says that on his weaker side, his reflexes are overexaggerated when the doctor checks them.

 

I"m sorry. It's a shitty disease, and not just because of the physical issues. Although, basically echoing what you said, this was a better diagnosis than a lot of things out there.

 

He got his diagnosis exactly ten years ago (this month, actually). He was having issues, and his doc eventually sent him for an MRI. It was quite a shock.

 

On the plus side, we had no idea what to expect with mobility, and he's doing better than we expected back then. And it affects everyone differently. There are lots of options for drugs, including some decent assistance. If I were to make any suggestion, it would be to encourage you to look for a nearby teaching hospital/university. I think it may be worth it, if not now, then later. 

 

:grouphug: :grouphug: :grouphug:

 

 

Thank you for sharing all of that - hard and encouraging.

 

 

Hopefully it's something like a partially herniated disc that's putting pressure on the nerves.  Not sure that's less scary though.

 

I had really hoped it was a back issue.  That would actually be great. :)   My understanding is that the EMG was essentially for the purpose of finding out if the issue was leg, back or higher.  Maybe a spinal issue in the neck could cause this?  But they are now pretty much focusing on neck and up after seeing me in office yesterday.  

 

 

 

 

Feeling a little overwhelmed today.  Really hard not to look at the kids and think they are just so little.  Sigh. :(  And then to think, "Kelly, you're being a freaking drama queen.  Get up off your tail and go do something functional outside."  Yeah, all that.

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Katy

Katy

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Is you color vision different in one eye than in the other?  When not having a migraine?

 

 

ETA: I once had symptoms similar to yours and I was told I had been given a bad batch of flu shots, and that the symptoms would resolve themselves over the next 6 months.  Had any flu shots recently? 

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BlsdMama

BlsdMama

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Is you color vision different in one eye than in the other?  When not having a migraine?

 

 

ETA: I once had symptoms similar to yours and I was told I had been given a bad batch of flu shots, and that the symptoms would resolve themselves over the next 6 months.  Had any flu shots recently? 

 

No vision issues at all and no flu shots ever. ;)

 

This all actually started almost three years ago with a spastic muscle.  It's so weird.  I can totally pinpoint it and it began right after we moved back to Oregon.  This leg hit the cold weather and every time it got cold, it tightens and spasms.  Very annoying.  But at the time I didn't think it was indicative of anything else.  I knew my gait was getting a little "off" but I injured a knee years ago (left) that can get a little arthritic occasionally.  But we went to a state park and we were playing a game with the kids in the middle of the summer and my DH said, "What the heck is wrong? Why are you running like that?" And I noticed the drag a little more around then.  I didn't put two and two together until the past couple weeks - I kept breaking flip flops (right side) all summer - and I thought it was because they were cheap-o handmedown flips, great for yardwork, kwim?  But I have a pair of shoes that now have a lot of rubbing on the toe on my right side and made a doctor appointment a few weeks ago.  Then I caught my foot and tripped and fell (and caught myself from landing flat on my face so that was good) and that's when we noticed everything was kind of ... escalating, I guess.  Three weeks ago at the appointment I had equal flexibility in my left and right foot. Yesterday the right had visibly less.  

 

Ugh.  This is less than fun.  

 

Ya'all, this year has sucked.

 

My sister mentioned Lyme last night and that makes me wonder too.  It can initially present like ALS.  I will mention Lyme when I go in next week.  I did have a deer tick bite in 2008.

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Jenn in FL

Jenn in FL

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:grouphug:  :grouphug:  :grouphug:  Just a quick thought...

 

You are such a well known poster and presence on these boards, why don't you start a new thread with "Lyme" in the title?  I think posters will be coming out of the woodwork (and also out of lurkdom) to provide you with info and guidance and help finding a Lyme Literate Medical Doctor (LLMD).  Not all Dr. are informed and up to date with regard to current treatment protocols.  

 

This thread can remain active for support as it is and the other might bring out more Lyme specific information.

 

Good luck and Hang in there!

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mommytobees

mommytobees

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She only came in to check reflexes before the EMG - it was not our first official appointment.  Apparently due to insurance, your first appointment gets you X amount of time and subsequent appointments are considered follow-ups and get a lesser amount.

 

Because of this, she didn't want the EMG to be our first appointment but rather see me in office next Thursday instead.  She said she felt, after checking reflexes, that the EMG would be a waste of our time barking up the wrong tree and, as long as I didn't mind (the EMG was ordered by my family doctor) that she would rather spend the time with me in the office and schedule an MRIfor head/neck imaging.

 

Honestly it freaked me out.  Who shows up to an EMG, has a neuro check their reflexes and say, "Nope, not this.  Let's skip ahead and see you next week and we'll get an MRI scheduled."  There's nothing about that that screams, "Hey, you're just imagining this and all is well."  KWIM?  

 

EeeeeeeR!!!!!!!!!! I wouldn't be agreeing to the EMG without the brain or spinal MR anyway! I'm glad that your Neuro said, "no" to the EMG.

 

Having said that, you need the MR if you are having foot drop. MS is not the only thing that would cause foot drop, there are several different things that would.

 

As for the reflexes, ya, that can happen in MS. Last year, when my ds18 was dx'ed with MS, he had zero right knee and ankle reflexes. Last week, when my dd15 was in the hospital and also dx'ed with MS, her left knee had limited reflexes.

 

I'd want the MR images before going to an EMG. EMG _hurts_.

 

Kris

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BlsdMama

BlsdMama

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:grouphug:  :grouphug:  :grouphug:  Just a quick thought...

 

You are such a well known poster and presence on these boards, why don't you start a new thread with "Lyme" in the title?  I think posters will be coming out of the woodwork (and also out of lurkdom) to provide you with info and guidance and help finding a Lyme Literate Medical Doctor (LLMD).  Not all Dr. are informed and up to date with regard to current treatment protocols.  

 

This thread can remain active for support as it is and the other might bring out more Lyme specific information.

 

Good luck and Hang in there!

 

 

Thanks Jenn - that's a really good idea.  I think I'll do that.  I'm just really curious if anyone presented with hyper reflexes and drop foot but *without* pain.  I appreciate your input.

 

EeeeeeeR!!!!!!!!!! I wouldn't be agreeing to the EMG without the brain or spinal MR anyway! I'm glad that your Neuro said, "no" to the EMG.

 

Having said that, you need the MR if you are having foot drop. MS is not the only thing that would cause foot drop, there are several different things that would.

 

As for the reflexes, ya, that can happen in MS. Last year, when my ds18 was dx'ed with MS, he had zero right knee and ankle reflexes. Last week, when my dd15 was in the hospital and also dx'ed with MS, her left knee had limited reflexes.

 

I'd want the MR images before going to an EMG. EMG _hurts_.

 

Kris

 

So, oddly, what I have is apparently hyperreflexia - my reflexes on my right side are *super* exaggerated.  It's the oddest thing.   Both of your kiddos have MS?  I'm sorry that sucks. :(  Yeah, I know there are a few things that can cause drop foot.  Essentially the only words I'd like to definitively hear are, "This is definitely not ALS."  And I doubt it is-  I'm young, I'm a woman, it's fairly rare, blah, blah, blah.  I was feling pretty panic-y yesterday and the anxiety is much less reduced today, thank God. (Literally.)

 

 

 

Is the Thursday appointment - tomorrow? 

 

I thought it was, but nope, it's next Wednesday.  No idea how I could mix that up - but meh.  It seems really far away and it's not.  I need to suck it up a little, go outside, keep busy.  ;)  It's not like I have chronic pain or fatigue like some people I know ;) so I just shouldn't feel overwhelmed yet.

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Jean in Newcastle

Jean in Newcastle

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I thought it was, but nope, it's next Wednesday.  No idea how I could mix that up - but meh.  It seems really far away and it's not.  I need to suck it up a little, go outside, keep busy.   ;)  It's not like I have chronic pain or fatigue like some people I know ;) so I just shouldn't feel overwhelmed yet.

 

We all have our own overwhelming circumstances.  It's ok to have this be yours.   (Well, actually I wish that you didn't have it but it's ok to acknowledge it.)  I agree that distraction and being busy can help. 

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Liz CA

Liz CA

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Getting things moved along, while certainly scary, is actually better medically.  The MRI will tell the doctor so much more than the EMG would have.  :grouphug: :grouphug:

 

I get that it's scary. A MRI can also show something that is not necessarily horrible but more specific so the doc can more accurately assess what is going on.

She just changed diagnostic tools so she can get the most info for what she wants to see.

Hang on. Waiting is never fun. Keep us posted.

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mommytobees

mommytobees

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Thanks Jenn - that's a really good idea.  I think I'll do that.  I'm just really curious if anyone presented with hyper reflexes and drop foot but *without* pain.  I appreciate your input.

 

 

So, oddly, what I have is apparently hyperreflexia - my reflexes on my right side are *super* exaggerated.  It's the oddest thing.   Both of your kiddos have MS?  I'm sorry that sucks. :(  Yeah, I know there are a few things that can cause drop foot.  Essentially the only words I'd like to definitively hear are, "This is definitely not ALS."  And I doubt it is-  I'm young, I'm a woman, it's fairly rare, blah, blah, blah.  I was feling pretty panic-y yesterday and the anxiety is much less reduced today, thank God. (Literally.)

 

 

Oh ya! I understand that one!

 

When they (the masses of doctors) told me they were going to test for neurosyphilis, I shrugged. THAT I wasn't worried about for either of my children as a) they aren't sexually active and b) I _KNOW_ I didn't miss syphilis in my past. But, when they were testing for parasites (in the brain) and CNS Lymphoma, I was _MORE_ than a little perturbed. I wanted to know that there were no cancer cells found in the CSF. So, when ds18's CSF came back with O-bands, I shrugged and while I was a bit surprised, I wasn't upset. DD15's CSF was just taken today, so we'll see what it says.

 

Ya, having two kids with MS bites. How the heck did that happen?

 

Kris

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BlsdMama

BlsdMama

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So the appointment wasn't rockstar.

 

Longer appointment this AM  - got to ask a lot of questions.  She doesn't think this is ALS at all.  That was a relief.

 

I failed my drunk test.  Walked heel to toe and couldn't keep balance. That was somewhat upsetting. I had not realized my balance was off.

Is that normal MS?

She did something to the bottom of my foot and it spasmed/tremored.  Does anyone know what that was that she did?  She repeated it again immediately, then came back five minutes later and repeated it again.  Each time it went into a series of spasms.  All on the right side.

 

I could feel cold everywhere and pain.  I had no problems with sensation on my back.

 

I felt pretty good leaving. She said she felt MS is a possibility and would like an MRI.

 

I felt less good when they called a few hours later and had it scheduled for Friday morning.  That can't possibly be typical?  I'm grateful, don't get me wrong, but it is a little creepy that my appointment was this morning and I have an MRI for Friday and I was told a few weeks ago it can take up to a month to get into an MRI.

 

The MRI will be both with and without contrast if that means anything to anyone and will be of my entire spine.  I suspect that she suspects this is Primary MS.  Sigh. I think God thinks I can handle more than I think I can handle.  Just sayin'.

 

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Peaceful Isle

Peaceful Isle

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My dh has MS. Was diagnosed about 8 years ago. It early sounds like it could be that but it's never a definite until the MRI shows something.

 

Just as an encouragement. My dh had a bad first few years, but has done so super well the last 5. He has regained back all his strength, and has had no attacks in 5 years. Glory be to God for that.

 

I know your symptoms seem scary right now, but life has a way of waxing and waning. Praise God it isn't ALS. I have a friend dying from that right now,

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KatieJ

KatieJ

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So the appointment wasn't rockstar.

 

Longer appointment this AM - got to ask a lot of questions. She doesn't think this is ALS at all. That was a relief.

 

I failed my drunk test. Walked heel to toe and couldn't keep balance. That was somewhat upsetting. I had not realized my balance was off.

Is that normal MS?

She did something to the bottom of my foot and it spasmed/tremored. Does anyone know what that was that she did? She repeated it again immediately, then came back five minutes later and repeated it again. Each time it went into a series of spasms. All on the right side.

 

I could feel cold everywhere and pain. I had no problems with sensation on my back.

 

I felt pretty good leaving. She said she felt MS is a possibility and would like an MRI.

 

I felt less good when they called a few hours later and had it scheduled for Friday morning. That can't possibly be typical? I'm grateful, don't get me wrong, but it is a little creepy that my appointment was this morning and I have an MRI for Friday and I was told a few weeks ago it can take up to a month to get into an MRI.

 

The MRI will be both with and without contrast if that means anything to anyone and will be of my entire spine. I suspect that she suspects this is Primary MS. Sigh. I think God thinks I can handle more than I think I can handle. Just sayin'.

I am sorry you are goi g thru this. MRI quickly , lets just view that as a good thing. Get the test over with and you will have some answers.

 

Contrast in my case with ct scans means I had to drink something. I assume it is a more detailed scan then.

Hugs

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mommytobees

mommytobees

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So the appointment wasn't rockstar.

 

Longer appointment this AM  - got to ask a lot of questions.  She doesn't think this is ALS at all.  That was a relief.

 

I failed my drunk test.  Walked heel to toe and couldn't keep balance. That was somewhat upsetting. I had not realized my balance was off.

Is that normal MS?

She did something to the bottom of my foot and it spasmed/tremored.  Does anyone know what that was that she did?  She repeated it again immediately, then came back five minutes later and repeated it again.  Each time it went into a series of spasms.  All on the right side.

 

I could feel cold everywhere and pain.  I had no problems with sensation on my back.

 

I felt pretty good leaving. She said she felt MS is a possibility and would like an MRI.

 

I felt less good when they called a few hours later and had it scheduled for Friday morning.  That can't possibly be typical?  I'm grateful, don't get me wrong, but it is a little creepy that my appointment was this morning and I have an MRI for Friday and I was told a few weeks ago it can take up to a month to get into an MRI.

 

The MRI will be both with and without contrast if that means anything to anyone and will be of my entire spine.  I suspect that she suspects this is Primary MS.  Sigh. I think God thinks I can handle more than I think I can handle.  Just sayin'.

 

As someone else said, I think your foot thing was the Babinski Reflex. If you have an abnormal Babinski, I'm not surprised that she kept checking it. THAT is weird and not good.

 

Check this out (normal and abnormal and how to do it): 

 

This is in a baby, which is different than in adults: 

 

Have your husband repeat it and see if you respond funny again. My son is absent deep tendon reflexes in the knee and ankle on his right (I think) leg....it's fun to play with it.

 

Gait examples: http://library.med.utah.edu/neurologicexam/html/gait_normal.html

 

As for the MR, I'm not surprised. I might have been a bit surprised if you said they admitted you through the ED to do it ASAP, but not that they told them they want it this week. 

 

Good that they are doing contrast. AND, really really good that they are doing the spine. That isn't always a given. If you are interested in understanding what you might be reading, check this page out: http://www.radiologyassistant.nl/en/p4556dea65db62/multiple-sclerosis.html

 

Now having said all that... did she say Primary in the conversation? I wouldn't be concerned that you have Primary Progressive MS, but you know what your body has been going through. National MS Society has a good explanation of the types of MS:

http://www.nationalmssociety.org/What-is-MS/Types-of-MS

 

Familiarize yourself with the McDonald Criteria. http://www.nationalmssociety.org/For-Professionals/Clinical-Care/Diagnosing-MS/Diagnosing-Criteria

 

Final thought:

 

When you go in on Friday, ASK if you can have a copy of the images TODAY while you are there. The worst thing they will say is NO. It will not include the radiologist report, so keep that in mind IF you decide to look at the images.

 

{{{hugs}}} If you need anything at all, I'm Kris Desh (Totoro face avatar) on Facebook.

 

Kris

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mommytobees

mommytobees

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I am sorry you are goi g thru this. MRI quickly , lets just view that as a good thing. Get the test over with and you will have some answers.

 

Contrast in my case with ct scans means I had to drink something. I assume it is a more detailed scan then.

Hugs

 

This contrast will be injected right into the vein.

Kris

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melmichigan

melmichigan

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The imaging center attached to the neurology group I see always schedules their patients within 24-48 hours, so that wouldn't concern me at all.  Try to make sure you're hydrated without going overboard so that it's easier to get the contrast started.  I've had enough MRI's that they don't restrain my head anymore, but you have to remain very still, even while they are injecting the contrast, so if you have any problems with anxiety, or with IV starts then let them know ahead of time.  They will complete the procedure once without dye, then inject you, then repeat it, which is why positioning is so important.

 

I always take a disc of my MRI pictures with me when I leave.

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