Is this MS?

[legalgirl5]

Hi,
I am a 47 year old woman who has Type 1 diabetes, Crohns Disease and a newly diagnosed seizure disorder due to a car wreck when I was 15.  I have had the seizures since I was 15 but I was not medicated.  I thought "everyone" had the jerks and stuff.

Diabetes is doing great!  I am on an Insulin Pump and have fantastic control and A1C levels.

In 2000 I started having problems with pain in my sternum.  It feels like a wash rag would feel when it was ringed out.  Painful, heavy and squeezing.  I went to the hospital thinking it was a heart attack and I was told it was "gas" or "stress". A few months later I was diagnosed with Crohns disease after a ten day stay in the hospital. I did remicaide therapy as well as massive steroids.  I began to feel better but developed serious fatigue and continued to have the sternum pain but they found "no reasons for it".  so we moved on.

Over the next few years I had problems with my vision.  Mainly in my left eye.  This included blurry, loss of vision, eye pain and stars.  My opthamologist dialates my pupils yearly looking for signs of diabetes. Nothing.  Oh...I also lost all my side vision. and began to have difficulties with short term and long term memory.

In 2004 I was in another accident but only broke my arm.  No head injuries.  My memory worsened, my vision went down hill, I developed headaches and the chest squeeze thing continued.  Now, let me clairify....the chest thing comes only once in awhile and as weird as it sounds the other problems follow within aprox. 48 hours.  I also started falling and began to laugh at myself.  I had apparently forgotten how to walk and was constantly tripping over my left foot.  Then I had another sternum squeeze and wham...I had massive cramps that started in my left hip and ran down my leg towards the knee.  I started having cortizone shots in my hip in order to try to relieve the pain.  They did nothing so after about ten we quit.  This went on for over three months.  A massage therapist claimed it was spasitic muscles.  I have always had visious leg cramps but this was different.  It never stopped. until one day...it started to improve and by the end of the week it was gone.  during this time frame my boss had taken to calling me "Dorie" from Finding Nemo. I also started having hearing issues.

2005 - 2008 the same things listed above would come and go.  Along with numbness in my pelvis, hands (been checked for carpal) and left leg.

Winter 2008 - 2009 it became unbearable.  I began having the sternum squeeze every couple of days lasting about 5 to ten minutes.  Then I started falling every day (several times day) the pain in my left side became unbearable and I felt like I was loseing my mind.  The doctors did stress tests, EKG and all the heart stuff..Everything came out fine.  Then they sent me to a rheumatologist.  No RA, No carpal, No Lupus, No lyme ..everything looked great.  ya...
Then I had my first Grand Mal in his office when they were doing the electricty test.  So off to a neurologist I went.

I had an MRI which showed lesions on my brain and white spots on my neck and temporal lobe damage as well as a couple of other areas of the brain...basicly the front, side and back. I had a VER which was normal. I was put on Topamax and went on vacation.  Within a week I was seeing weird things....flashes, halos, space ships and pretty lights.  My neck and head pain was unbearable and I still had seizues.  My eye sight went down hills so fast that we thought I was going blind.  I also had intense pain on m right cheek almost like tooth pain.  But...no cavities and nothing wrong with my teeth.  The Neuro took me off the Topamax and put me on Keppra.  Instructed me to wait a month and then see my eye specialist.  The pretty lights started to go away as did the neausea but the pain in my left side started to bother me off and on.

I came home and started to do fantastic!  Energy was through the roof.  I was clear in my mind most of the time and felt my age.  Then I was hit with the sternum pain and 48 hours later I was walking with a cane, in intense pain...falling again and could barey remember my name. My vision was almost gone in my right eye and I had facial pain and headaches again.  My neuro sent me to the eye doctor to check for glaucoma and upped my meds (did not help).  No glaucoma and eye Dr said my astigmatism had severly worsened in six months.  I got new glasses and left the office wiht an appointment for a year from now .  My neuro called me and said she was suspious of MS and wanted another VER.  I had the VER,we spent forty minutes on my left eye and three minutes on my right eye.  Three weeks later the neuro upped my seizure meds and said she wants to see me sooner?  when?  No idea.

Then I got a call out of the blue from my eye doctor who wants to test my non-existant side vision.  Says my Neuro requested it.

Sorry this is so long.  I am starting to feel like a hypercondriact and I am afraid to tell the doctors anything.  I think they think I am nuts and I dont want anymore tests.  They are expensive and show very little.  Do you think the DR. has reason to believe MS or is she grasping?  I have been tested for Myasthenia Gravis and thank heavens it was negative.  On Monday I am suppose to have a Cartoid Doppler  as per the Neuro because of the falls, memory loss and I have no idea what else.

Yesterday, I had to pick up a precription and when I went to sign my name for some ODD reason, I wrote my sons name.  That was just a little weirder than I can handle.  Frankly, I am ready to feel good.  I want to be normal and figure this all out, once and for all.

Any ideas would be gratefully accepted.

Thanks
legalgirl5

[Quixotic1]

I think it is very important that you share the "timeline" of all of this with your neurologist.  I didn't realize that she might be unaware of the things you told us.  You might just have her read your descritpions of your problems as they have occurred.  You could also have her read my response.  If she is an MS Specialist she shouldn't need to read my thoughts and could be alienated by my position.  Many doctors do not like to know that their patients are finding info on the internet.

Again, I try to give good, solid info that I can back up with sources, but still...

We always recommend doing a Timeline of one's symptoms.  It can help the doc to see any patterns immediately.

http://www.medhelp.org/health_pages/Multiple%20Sclerosis/The-Importance-of-the-Timeline/show/765?cid=36

Also, there is a whole, huge list of articles we all have written - called Health Pages.  You might want to look through them for more info.

http://www.medhelp.org/health_pages/list?cid=36

It is not surprising that the ophthalmologist thinks you have MS.  I hope he writes a letter to your neuro.

Quix

[legalgirl5]

Hi..

I am so glad you mentioned that the flu shot can cause problems.  I thought I was "nuts".  I have been begging them, to not give me the shot for the past couple of years.  This last year was by far the worse experience with it.

I know.. your not trying to convince me!  I appreciate all of your help!!. Hearing explanations and reading the articles your sending me is wonderful.  I am not happy that this is what it appears to be, but happy I am starting to understand.  For so long, I have convinced myself....oh...its normal...everyone has that.  I know that sounds stupid but in a way it was easier than thinking, I had some sort of emotional problem.

When problems come in such huge waves and then just dissapear...a person begins to question their sanity.  I know from reading your letters on this page and other pages you have experienced, all of the same feelings, that I have, and have had.

I saw the Opthamologist today.  I went in for my Field of Vision test.  he was shocked at the results and is writing a letter and sending copies of the results to my neuro.  I did find out that she (my neuro) specializes in MS.  Anyway, he (opthamologist) suggested that he believes I have MS, and would be shocked if I did not.  I am lined up for another Field of Vision and Optic Nerve picture in 6 months.

I sure appreciate you being here and it is obvious that you are a "gift" to everyone.  I am sorry that you have such a hard time, but I think that your being used as an inspiration and book of knowledge; to everyone.

Anytime,and I mean anytime you have ideas for me or a research area for me to check out...give me a scream.  I would love the information.

I took it from your response that I should still get the flu shot this year.  I had talked myself out of it but I guess, you have talked me back in to it!

Thanks again and I wish you a wonderful and healthy week.

Legalgirl

[Quixotic1]

Well, your answers don't change much for me.  I have another thing to note, though.

Last fall/winter you had a "relapse" immediately following a visit to your doctor.  During that visit you had a flu shot.  Flu shots - and any immunization -  trigger the immune system.  ANYTHING that stimulates the immune response can trigger an MS relapse.  So the timing is right for that piece of the puzzle.

Note:  The Flu itself is more likely to cause a severe relapse, so even though the shot can also do it, people with MS should get vaccinated.

2nd note:  I am not trying to convince you that you have MS.  I was making the argument, though, that MS can explain everything that you have told us.  

Quix

[legalgirl5]

Thank you so much for your response!  I am feeling a little over-whelmed and not sure what to say or answer first!

First off thank you for the links.  I have been reading the articles and trying to learn as much as possible from them.

I welcome all information and links you may have.

I suppose in the past year I have developed a bad attidude. I am feeling like a guinea pig or the person who is making the payroll for the medical field. I have done so many blood tests my veins do not want to work anymore and most of the tests come back normal.  It is not that I want something to be wrong, I would jut like to know "what" it is and fix it.  I have the "fix it" mentality and it is hard to change!

Let me try to clarify a few things I said.  

1. The Type 1 diabetes was diagnosed when I was barely 20.  I have had  few side effects, as I am a fix it queen and I am very aware of what I do.  I have also studied the disease to death.

2. In early 2000 when I was diagnosed with the crohns disease I had a massive attack and ended up with biopsys confirming it.  I had the Remicaide and I had several side effects from it.  I hated it.  Very soon after having the IV my health began to go down hill.  I attributed it to the remicaide and blamed it for most everything including the sternum pain and walking issues.

3. My vision has been weird.  In my early twenties they found that I had lost my side vision and they assumed it was a birth defect with no investigation.  Over the years I would do great with my vision and then one morning I would wake up to pain and eye sight loss.  Sometimes I would patch the eye to get relief from the pain.  My vision would be blurry and sometimes double.  I usually would go see the eye doctor and they would change my presciption.  A few weeks later it would improve the pain would go away and the doctor would relax and we would all forget about it until the next time.  In between these boughts I would have a white film (it seemed) cloud over one eye. I would stop the car and rub my eye for awhile until it cleared. Immeadiately afterwards I would have my sparkles and then another bought with the vision would start back up. This has been going on for at least twenty years.  Recently, it became so bad I could not see anything. Because of the seizures worsening from my head injury I was put on the Topamax (bad drug)!  At least for me.  This is when things got really crazy.  I ended up back at the eye doctor who checked for glaucoma, he said no but my astigmatism had drasticly changed for the worse.  So,I got a new presciption.

Back to last winter which was my second worst episode...
I saw my primary in November for my three month check and my flu shot.  I was my good "normal" self.  I had been gardening and doing my photography and all the stuff I love. She was pleased with how I was doing.  

Immeadiately after seeing her I became sick.  I went back to see her and she about fell over.  I was in extreme pain in my hip and leg, I was dragging my leg, tripping when I walked.  Complaining of the sternum pain and she freaked out.  I no longer have the list but she ran blood tests and urine tests for everything....I ended up in the ICu for three days for more testing and monitoring (heart). She checked every blood level and then moved into checking me for RA (my mother had stills disease and now has RA), she checked for syphillis, lyme and Lupus and everything she could think of.  Everything came back normal. She then sent me to a rheumatologist.  I had some edema in my right wrist.  He focused in on that and paid little attention to my left hip and leg.  He re-did all the tests that my primary did including Eppstein Barr (all normal).  He lined me up for four months of physical therapy for my wrist, leg, hip (did no good) therapists all said until the spasticity went away, there was not much they could do.  The more they exercised it, the worse it got. By this time I was hanging on the shopping cart, walking with a cane and lifting my left leg manually to go up the stairs at home.  They took massive amounts of x-rays and said that some stuff showed but no RA and never told me "what the stuff was".  Radiologist wanted a CAT scan and MRI, rhuemy said no.  In the mean time my seizures were worsening.  Then they scheduled me for a test where they test your nerves.  In the middle of that test I had a Grand Mal.  The rheumy wanted me out of his office NOW.  he said everything is great...go see a neurologist and go to the hospital.  Hospital did nothing of course, and my primary called a neuro.

I ended up at the neuro office who was convinced I was having seizures (I was) and she was also convinced I had Myasthenia Gravis (came back negative).  I went and had my MRI.  I do not know what voltage or anything.  All I know, it was ian open MRI and suppose to be top of the line.

They found damage to my temporal lobe Occipital Lobe and one other?  They said that they also found a couple of lesions on my cervical spine and in my head by the temporal lobe area and by the butterfly looking piece (just 2 there). I had already had a VER and the nurse told me it was okay.

After the crazy lights and issues with the Topamax I was sent back to the eye doctor and told everything looked fine.  I had another VER which I have no results on yet.  I am scheduled to go back to the eye doctor this month to test my side vision which is non-existant.  Last month, I had another attack of the sternum , hip, leg, speech, falling etc. of course, it was after I saw my neuro.

I have been told that she is an MS specialist as well and I see a lot of MS patients in her office.

I have to admit, I have never broken all of this down for her, like I have for you. Part of it is just feeling like she is going to think, I am nuts and the other part is there are too many issues to deal with in an appointment with her.  She requested my DVD of my MRI the last time I was there, she wanted to sit and look at it.  She also mentioned that she is suspious of MS and that is what brought me to this forum.  She never said "why" she thought it was MS but then we moved on to the seizure problem.

I hope this is not too overwhelming and I hope it explains things a little better.  I forgot to mention that when I was   seeing the rheumy he suggested a shrink thinking I might have Fibromyalgia.  What ever...was my response.  Once again...I think I freaked the guy out!  LOL...

Thanks again...you put so much work, time and effort into your response.  I learned more from you than I have anyone up to this point.....and I appreciate all the information...I think it is time to get serious and try to understand everything rather than giving up.

legalgirl

[Karen99]

OMG!  What a tremendous response.  I learned many things from your post and feel like crying.  Talk about reach out and touch someone!

[Quixotic1]

continued from above

If a person has clear attacks and has the multiple neuro exam abnormalities and the mimics are ruled out the diagnosis of MS CAN BE MADE RIGHT THEN AND THERE EVEN WITHOUT THE MRI.  In reality most neuros won't diagnose MS without some characteristic MRI lesions, though they could if they were smart and confident.  But, with the lesions it becomes a slam dunk.  Period.

So, depending on a few pieces of information, it sounds like you might qualify for the diagnosis right now.  There is a long article I wrote on exactly what the doctors go through to to diagnose MS.  If you are interested it might be worth reading.

http://www.medhelp.org/health_pages/Multiple%20Sclerosis/THE-MCDONALD-CRITERIA-revised-2005/show/370?cid=36

So, you see there are real reasons for considering MS and the testing needs to be completed.

On top of all the reasons I have outlined, you took a drug (Remicade) that is known to worsen MS or even cause it to show up.  I'm not exactly saying that it "causes MS", just that it might cause MS to show up earlier than it might have otherwise.

I'm pretty convinced though I realize that I don't have all the info, like your neuro exam results and the results of all the blood tests.

I hope all this doesn't frighten you.  I believe that people do better working from a position of more information.  It will help you understand what your neuro is doing and thinking.  And, Lulu is quite right.  If MS is looking likely, don't hesitate to ask for a 2nd opinion by an MS specialist.

Sorry about the long-windedness.  I was a physician in my former life and never lost the desire to teach people about what they were going through.

Welcome again,

Quix, MD

[Quixotic1]

Hi, and Welcome to the forum!  You have had far more than your share of the crummy stuff happening to your body.

For many years it was thought that Type I Diabetes and MS were mutually exclusive due to the kind of tissue type which was associated with each disease.  However, that was disproven and discovered that there was an association between the two.  If you wish I can probably dredge up the study and cite.

I am not aware of any association between Crohns and MS.

But, you said something that piqued my interest.  In people with MS the use of a anti-TNF med (Tumor Necrosing Factor Blocker), such as Remicade, is known to dramatically worsen MS.  There is also some evidence that these drugs may bring on or precipitate the beging of MS.  So, in people with both MS and diseases like Crohn's, RA, Psoriasis, etc the use of an TNF blocker is highly discouraged.  If the MS has not yet surfaced, then no one would know of the contraindication.

While no one can diagnose anything online, I would like to look at some of what you have told us in the context of MS.  I agree that the repeated pain in your sternum does sound a little like the tightness that is associated with the MS HUG.  You can look this up online and read all about it.  It also could be the severe esophageal spasm that can be associated with esophageal reflux - I don't know if that is associated with Crohns or not.  It sounds like the onset of your problems was in your mid-30's - pretty classic for MS.

However, the tightness in your sternum seems to preceed ther onset of other symptoms all of which sound VERY neurological and many of which are common in MS.  You seem to have "waves" of symptoms that occur and then resolve leaving you to feel better.  This is a pretty classic pattern for the most common form of MS, called Relapsing Remitting.  Here is an article on the different types of MS:

http://www.medhelp.org/health_pages/Multiple%20Sclerosis/Categories-of-MS/show/32?cid=36

and here is another on the definitions of what makes up an attack (relapse, exacerbation, flare) of MS:

http://www.medhelp.org/health_pages/Multiple%20Sclerosis/Relapses--Pseudo-Relapses-and-Remissions/show/372?cid=36

Did the visual problems occur all the time or in attacks also where some or all of your vision returned?  I suspect that the ophthalmologist was also looking in your dilated
eyes for signs of optic neuritis.  Many of your symptoms are classic for that and it is one of the most common problems in MS.  However, many ophtho's also are ignorant of the fact that there is no sign of optic neuritis on physical exam in 64% of people with MS and optic neuritis.  This is because the lesions are too far back on the otpic nerve to show the signs in the eye itself.

The pain on one side of your face, often felt as dental pain, is pretty classic for MS also.  It is something called Trigeminal Neuralgia, meaning a false pain in the nerve (the Trigeminal Nerve) that brings snesation from the face, gums, lips and tongue to the brain.  Usually older people (older than 60 or so) get Trigeminal Neuralgia.  When it is seen in a young person it should trigger the thought of MS and an MRI.

The dizziness is another of the most common symptoms in MS.  So in people with severe dizziness and with falling an MRI should be done to check for lesions in the brainstem and in the part of the brain responsible for coordination, called the cerebellum.

So, here is one way to look at what has been happening to your for the last 9 years or so.  You had some severe symptoms referable to your abdomen and were diagnosed with Crohns Disease.  I gather the diagnosis of Crohn's was made by biopsy?  You were treated with Remicade (an TNF blocker) and steroids and for a while felt much better, but then severe fatigue set in (a classic symptom in MS).  I can provide you with studies on this if you like.

Then over the next four years you had symptoms suggestive (to me) of optic neuritis, by exam and the first VER were negative.  Doesn't mean a lot, though the VER is a very good test.  But no MRI yet????  But, you began having pain in your left hip and leg which was not diagnosed, but a massage therapist thought that it felt like spasticity.  Man, this should have triggered a visit to the neurologist, because localized spasticity screams "spinal cord lesion" like you would see in MS.  Do you know if your reflexes were/are hyperactive in your left leg?  Then, 3 months of severe pain resolve within a week.  That is how MS relapses often resolve and is one of the reasons the docs often think we are looney tunes.

Last winter was horrible and you had more attacks of sternum pain, falling, facial pain, and vision loss.  Does/has you vision ever improved in between bouts?

Now the doc is really thinking MS and an MRI shows multiple lesions.  !!!!?????  At this point if there has been a careful ruleout of those other diseases that mimic MS and cause brain and spine lesions, you probably qualify right now for a diagnosis of Definite MS.

Now, that is just one way of interpreting what you have told us as though we were trying to explain what you have gone through with a diagnosis of MS.  It is not the only way.  So, my answer to you about whether MS is likely enough to go through more testing is YES!!!

Let me give you an explanation in a nutshell of the process in which MS is diagnosed.

First a neurologist would examine the history of what you have gone through to see if there is any pattern of problems that are typically seen in MS.  The answer here is a strong "YES".  The eye, the falling, the pain/stiffness in one leg, the facial pain, etc.  Then they look for a pattern of relapses, where some symptoms come on, stay for at least 24 hours and then resolve partially or completely.  You clearly have had multiple attacks of all of this.

The second thing the neuro looks for is abnormalities on the neuro exam.  You didn't give us much info about this, but it would be things like your loss of fields of vision, changes in pupil response, hyperactive reflexes, spasticity, falling when you stand with your eyes closed, areas of skin with decreased sensation, weakness, etc.  There are many dozens of tests they do.  

Then typically the neuro orders an MRI.  If the MRI has lesions on it the evidence is strong for MS IF the patient does have a history of two or more attacks and has evidence of damage on the neuro exam in two or more areas of the nervous system.

There is only one mandatory thing left. The neuro needs to rule out all better explanations for the problems and the MRI lesions.  These are things like RA, Lupus, Lyme, Syphillis, AIDS, Sarcoidosis, other autoimmune diseases.  These are tested for by blood tests.  MS is a diagnosis of "exclusion".  Better reasons must be ruled out.

con't below (too long)

[legalgirl5]

Lulu,

Thank you for your quick and imformative response!

Believe me, I have days where I think the Space Ships did come get me and others that I wish they would!

It sounds to me like I have some research to do!  But, hey we all have to start somewhere.

In defense of my neuro I have to say I have only personally seen her three times.  This is all fairly new...well not the issues but the "trying to figure it out"!  How much of this could be attributed to the brain injury is anyones guess.

To be honest, I have not shared the chest squeeze thing with her yet.  The last Doctor I told called an ambulance.  I also spent three days in the ICU and had a massive amount of heart tests and got the great news that everything was great.  So why was I there???

Anyway, Laughter IS the best medicine and some of the strange stuff I do...would be good fodder for a comedian..The look on my face as I realized I signed my sons name instead of my own, was probably priceless!!

legalgirl5

[Lulu54]

Hi Legalgirl and welcome to our MS forum.  I hope that you find some of the answers you are seeking here.  If you want specific information about MS, I would recommend that you spend some time reading our health pages (yellow icon, upper right side of this page).  They are written by our members, in easy to understand language, and contain a wealth of information.

Your symptoms sound like something neurological going on, and it could be MS ... but I'm not a doctor and can't say for sure.  What I do know is this has gone on long enough for you and someone should be coming up with answers for you.  

Is the neuro you are seeing an MS specialist?  If not, I would go for a second opinion by one - you can find an MS neuro through the website at mscare.org.  Even is your current neuro is a specialist, I think I would get a second opininon anyway since this one seems to be stymied in making progress.

Has anyone thought that perhaps your chest pain could be the infamous MS hug?  This is a constriction of the torso, usually the rib cage area, and is often confused with heart symptoms the first few times it happens.  I know for me it got me a lovely stay in the ER for 24+ hours at the local heart hospital.  Usually the hug lasts longer than what you have described, but it could be an atypical presentation.  

The vision problems could be optic neuritis, but you have been seen enough by your eye doctor that I'm fairly certain it would have been spotted by now.  But I should never assume anything, right?  And of course you already know that diabetes can cause problems with the vision too.

You mention the MRI, and I have to assume it was just the brain.  We would strongly recommend the spinal series also be done if it hasn't already.  AND be sure the MRI's are being done as at least a 1.5T machine, and a 3T would be even better.

I'm sorry you have thrown Crohn's on top of everything else - these autoimmune diseases seem to know no limits, and you can certainly have more than one lurking.

Are you sure the space ships with the pretty lights didn't do something really wacky t.o you?  LOL  I love that you still have a sense of humor, in the face of everything you are going through . If we couldn't laugh, we would definitely have to cry.

I hope we will see you around - welcome again.

be well,
Lulu