MS?

[Lisakoop]

I have been having some pretty serious health issues for the last 5 weeks. A trip the ER ruled out a stroke and heart attack, but after 4 weeks of tests we're still not certain what is going on. After our own research my husband and I are concerned that my symptoms are very much that of MS. Looking back, I've had several months of symptoms (I can only describe it as a bobble headed feeling where things just aren't as they should be and complete exhaustion) that I kept ignoring, blaming on exhaustion at the end of the day. For the first time in my life I've had some minor (if that is ever the case) incontinence and 3 bladder infections over the last 18 months or so (seems to have started after a mysterious illness 2 summers ago when I came down with what my doctor can only guess was a virus that left me in bed for 10 days with all of my joints on fire and finally a lacy type rash on my trunk). The first of March I had a major dizzy spell (not vertigo, but my own balance was off) and once that broke a low grade headache. I alternated these for 6 days and felt great on the 7th. I felt like I was over whatever it was until that afternoon when the left side of my face went numb and tingly and my left arm felt like a toothache, then became tingly and numb. I blacked out briefly in the waiting room of the ER and had several more episodes of almost blacking out over the next 3 weeks. I was in bed with lack of balance, bobbleheaded feeling, tingling and numbness in mostly my face and left leg and arm. There's more but, I'm sure you get the picture by now. All my tests -extensive labs (over 20 vials of blood have been drawn), EEG, CT Scan, EKG have come back normal. My brain MRI showed "nine FLAIR and T2 hyperintense lesions within the deep and subcortical white matter sparing the periventricular regions. The lesions are within the supratentorial brain. There is no associated contrast enhancement or mass effect. The lesions range in size from 2 mm to 8 mm. There is no restricted diffusion. No callosal lesions or posterior fossa lesions. There is no contrast enhancement. There is no abnormal enhancement or enhancing mass along the trigeminal nerves." The impression was that "the lack of perivenetricular lesions is atypical for a primary demyelinating disorder though still a possibility.".

So, neuro ordered C and T spine MRI with and without contrast saying he thought that I had had either multiple small strokes (due to too thick of blood, coagulation issues) or possibly it was MS. The blood work came back normal so he ruled out the strokes. The only findings were on the c spine : "a few small dot-like foci of T2 hyperintensity are present centrally in the spinal cord in the vicinity of the developmental remnant of the central spinal canal. No regions identified in the spinal cord typical for demyelinating disease or spinal cord syrinx. No abnormal contrast enhancement is detected."

The way the neuro explains this is that since the lesions are not where you would expect them in the brain and since none are found on the spinal MRI, even though my symptoms are such, he cannot say that it is MS. He says protocal is to rescan in September. And just deal with the symptoms (oh, and even though my blood is fine, he said to take a baby aspirin a day! I think he just wanted to give me something to do yesterday).

All this to say that that I am still symptomatic, unable to work (I am a Chiropractor) or even do a few chores around the house without the balance issues kicking in and the exhaustion knocking me down.

My husband and I want to explore this further and not wait for whatever this is to continue it's progression (the neuro is suggesting that my primary refer me to infectious disease to rule out Lyme and some other diseases, which we will, of course, do.  Neuro did run Lyme test which came back negative, but one of the differentials from the radiologist was Lyme). We are wondering if we should have the films looked at by someone else or if we should see a neurologist who specializes in MS. This is why I am writing to you - do you know anyone that specializes in MS (either to read the films or to evaluate me)? We live in Va. Beach and are willing to travel if that is necessary, although just the thought of that exhausts me.

I am just at my wits end trying to figure this out. I feel like a hypochrondriac and I know that my doctors don't know what to do next. Any guidance you may have would be much appreciated.

I have also email the local MS chapter to see if they have a referral list.

Thank you for anything you can offer.

Many blessings,
lisa

[essdipity]

Yes, I go to Hopkins. PM me with any questions.

ess

[Lisakoop]

Ashley - DC is not too far - 3 hours from us and about an hour from my parents in Maryland.  I would love the names.

Anyone know anything about the MS clinic at Hopkins?  

[twopack]

Good morning Lisa.  I was just too tired last night to do anything but collapse.  So here I am ready to start in on a repeat of my usual day.

If you want to check on responses to your question, you can go to the community home page at http://www.medhelp.org/forums/Multiple-Sclerosis/show/41.  The topics constantly scroll down with the most recent original or response at the top.  If you don't see it you can go to page two as sometimes topics get scrolled there quickly when a bunch of people are around.

I'm wondering if the neuro you saw actually looked at your MRI or just read the report.  I'd be suspicious of a neuro who showed no interest in actually eyeballing the images.  At any rate, ask the imaging facility to put all your MRIs on a CD.  They should be more than willing to do that and then you will have it in your records wherever you end up being evaluated.

I had an MRI done in 1990.  The radiologist detailed a problem in the brain stem.  Two neurologists shrugged it off saying I wouldn't be talking to them if anything was actually there.  NONE of them mentioned any other abnormality.  

This year I had that old MRI transferred to CD so my MS specialist could compare it to my newer images.  Guess what?  Lesions were clearly visible way back in 1990.  I'm not sure why none of the doctor's recognized them back then but I'm sure glad the images were stored someplace where I could get my hands on them.  Now they are in my personal records at home.

Please don't beat yourself up over your symptoms.  You aren't causing them and you are not being over-sensitive to normal body experiences.  There are enough docs out there who seem to take great satisfaction in minimizing their patient's symptoms.  Unless you enjoy being kept from participating fully in your life and profession --- what's happening is real!

I'm really interested to see what you find out, especially concerning Lyme.  That could be a much easier to deal with if you've had a recent infection.

Please stick around, ask questions, read other's stories and let us know how it's all going for you.  It's probably best to start a new topic as things occur to you.  Not a lot of us have the patience or vision to read through a lot of stuff to discover new questions.

Mary

[michelleric]

Welcome to the forum here. I would recommend getting a second opinion from an MS specialist. Lu gave you a good site to find one.

Good idea with calling the MS society to help you also.

Wishing you well,
Michelle

[ashleyPT]

I don't know how far you would be willing to travel, but I know some good neuros in the DC area.  Let me know if that interests you.  Hang in there.

~Ashley

[Lisakoop]

I hope I'm responding to posts correctly!  Didn't even know there were responses until I got the email this AM.  Is there a way to see responses sooner?

Thanks to everyone for your responses.  I was surprised at how comforting a simple "welcome, you're not crazy" response was to me.  I smiled at your nickname, Wobbly -- that has been my most consistent and irritating symptom (that and the exhaustion).  Seems it may be yours, too?  Thanks, so much, for the link Lulu.  I will get on that today.  While I'd rather MS not be what is going on, if it is, from what I've read the sooner you find out the better.  I'd rather not waste time waiting on the follow-up MRI, especially after reading so many accounts on how this took years to show up for some people.  

Again, thank you to all.  I am so glad that I found your group and am so grateful for your knowledge and support.

Many blessings,
Lisa


  

[Wobbly]

Hi there.. sorry to hear your having such a difficult time to find answers.  I know myself as well as alot of people here on this forum have and are going through the same type of thing as you, so your not alone.  

I hope you find some answers soon, MS is not an easy Dx to come to and alot of other Dxs have to be ruled out... having patience will help, but that can run out quickly and it can get VERY frustrating going through a process with no answers.

stay with us and let us know how things go..
take care
wobbly
dx

[Lulu54]

Greetings.  I hope you find lots of useful information here.  Be sure to read through our health pages (yellow icon, upper rigtht side) to learn more about this MiSerable disease.

Audrey is right about getting retested for Lyme. We had another person just today write about her multiple negative tests and now she is testing positive for Lyme.

As for typical, the more you learn about MS the more you realize that there really isn't a  sure typical anything.  The disease appears in so many places and presents in so many different ways that no two of us are alike.

An excellent source to find a neuro who specializes in MS is through the Consortium of MS Centers  - mscare.org.

You can search their list of members who belong to this group and find one close to you.  Their directory is at

http://www.mscare.org/cmsc/index.php?option=com_center_directory&Itemid=528

While you are there you might want to read some of their articles - this is a very good site, primarily for MS doctors.  

You are not a hypocondriac - its just that many people without a diagnosis begin to feel that way.  The answers aren't always easy, and especially with MS.

I hope we will see you around more - we're happy to field questions or just list to rants.

welcome again,
Lulu

[Audrey_M]

With the rash and joint pain being your first symptoms, I would definitely get retested for Lyme Disease, using the Western Blot test. It is entirely possible that you got a false negative on your first test or that they did not use the Western Blot test. Your PCP can order the test.

The CDC reported 959 cases of Lyme in Virginia for 2007 and 886 cases in 2009, so Lyme is not that rare in your state.

[twopack]

My guess is that Quix will be swooping in here very soon to explain her feelings about your doctor's approach.  She typically has an opinion about this common response to atypical lesions in non-typical locations.  Do you enjoy weenie roasts?  You will likely be invitied as a guest to the one held for your doc.

As I need to get ready to leave for work myself, I'll just mention that it seems to me that when enough people have lesions in non-typical places, maybe those places aren't really all that non-typical after all and need to be reclassified.  Oh yes, my lesions aren't typical either but after 20 years the diagnosis couldn't be denied any longer.  If it's got myelin, it's a target.

It looks like you have a good plan in the works and a terrific supportive partner.  I'm sure others will be along to offer support and suggestions.  I'll check back in when I get home tonight.

Mary