After 10 years, I guess it's time for the obvious question. MS?

[unglued35]

First, I've been a lurker for a few weeks now. Kudos to all of you knowledgeable and kind-hearted people who are so willing to reach out and encourage strangers like me.

I'll try to be as brief (but complete) as possible.  In high school, I was prone to leg pain so bad, I would pace the halls at night, crying. I was plagued by restless leg syndrome, but generally active (in many sports) and healthy.  Then, in college, I developed my first spasm - in my back, on the right side. It's so debilitating, I have to crawl on my hands and knees to the bathroom.  I begin to get this spasms on a recurring basis, in combination with bouts of fatigue that force me to sleep through class. And I was a straight-A, bookish, non-partying student.  I was not a class-skipper.  

Then, in law school (1998), I develop a strange, stabbing pain in my left side, which I have had now for 10 years. It is episodic, lastly briefly, but takes my breath away when it hits.  (I've seen a cardiologist, 2 gastros, 1 urologist and a GP for tests that included HIDA (gallbladder), ECG, Kidney Scan, Endoscopy, Colonoscopy, and aside from a diagnosis of GERD, everything is normal - these tests take place over 10 years). I also have an episode where I end up in an emergency room because I am unable to swallow a piece of food, and require an emergency endoscopy. This "frozen throat" (as I call it) continues to present day.  I've made numerous trips to the ER with everything from food to vitamins I simply cannot get down.  The RLS continues, and I'm plagued by recurrent yeast infections with no dietary, birth-control, diabetes or pregnancy correlation.

In 2001, I contract mononucleosis, (and therefore, the Epstein Barr Virus). Throughout 2002, the stabbing side pain, swallowing difficulties, yeast infections, fatigue and restless leg syndrome continue. I also have bouts of dizziness, but write this off to new-lawyer fatigue.  I'm just overworked, right?  Things continue at this pace for years.  

Then, in 2008, I take a fall from my horse.  Two weeks later, I end up in the e.r. complaining of fatigue, muscle pain, dizziness and debilitating fatigue.  It's attributed to the fall.  After this, I become pregnant and miscarry at 10 weeks.

We become pregnant again shortly thereafter, and I deliver in April of this year. Two weeks after my precious sons birth (April, 2009), I develop a muscle spasm in my back so bad I cannot turn my head.  It takes 2 visits to the acupuncturist and 6 tylenol a day to put a dent in the pain.  

At the same time, I am hit by muscle and joint pain so bad I feel as though I’ve been beat with a hammer.  I attribute this to the fatigue of a new baby, and the adjustment my body is making to having lost 20 pounds of baby weight in such a short time.  When I rise to nurse him in the middle of the night, I feel as though I am standing on knives. I also have bouts of uncontrollable, violent shaking in the night – I believe this is cold, but our house is a comfortable temperature.  I am utterly exhausted, and again write this off to new-baby syndrome.  I am also strangely clumsy, constantly running into things, slipping on my way down the stairs, tripping.  My eyes also hurt – I’m rubbing them constantly, thinking it’s simple eyestrain or fatigue.  

In May and June of 2009, things rebound. We take a 2 week trip overseas with our son and I have virtually no issues whatsoever.  Things are good.

Then, in July, things pick up again. Epigastric pain and a stabbing pain in left side re-emerged. Nausea constant and unremitting.  Loss of appetite, fatigue and body aches resurfaced, with pain greatest in morning and evening. Feet, ankles, legs, hips and hands painful.  It continues into August, when the fatigue totally debilitating.  At this point, the pattern of feeling “flu-like” is interfering with daily responsibilities.  Daily naps are a requirement, making dinner is virtually impossible.  My GP refers me to a gastro, and a CT scan of abdomen is clear.  An endoscopy revels the GERD (DUH!), gastritis, and bile in the stomach.  His rx for Kapidex eliminates the epigastric pain, but does nothing for the lack of appetite, difficulty swallowing or stabbing (and now crushing!) side pain.  CBC and Thyroid panel are also normal; lyme titer and syphillis test (WHY did she order this? lol) are negative, sed rate and ana are normal. My only abnormality is a vit. D deficiency

Things at this point are getting worse. The fatigue, dizziness, stabbing side pain, restless leg and lack of appetite continue.  Now, they are accompanied by numbness in my right foot, spots of numbess on my face, feelings of cold on one extremeity, alternating with a burning sensation on others.  My feet buzz, my entire thigh becomes numb, I feel things I've never felt before.  I can barely swallow water, and am becoming forgetful - spending an entire minute (I kid you not) trying to think of the word "vacuum."  I am off balance, slipping, tripping and running into things, and suddenly, my eyes hurt when I move them.  This particular stage has lasted over 2 months.

My GP refers me to a Neuro (not an MS specialist), who orders an MRI of the brain only, no contrast, at 1.5T.  It is normal, but it must be added that an entire plate of slides is completely out of focus.  

So here I am today - with the distinct impression something "isn't right," that, after a million doctors and tests, isn't getting any better.  I'm starting to feel (as a lot of good people here have) that I'm losing my mind.  That I need to either get a diagnosis, or just forget feeling like garbage and get on with my life.

Any advice, insight or suggestions would be most appreciated.  Particularly, in light of my next visit with the neuro on 10/23.  If it's helpful, I'm also of English/Scottish/Icelandic ancestry, and spent the first 20 years of my life in Wisconsin.  

Thank you so much!

[puppythreads]

I am not an expert, but in my case, many of my symptoms disappeared during remission, but the damage stays, i.e my bladder has never gotten better.  Besides that, you may think you are feeling better, but compared to what?  It's all relative to what you have gotten used to living with. Also they say that even when the disease is quiet, it can still be causing damage.  

I think it is a good idea to keep that appointment.  You never know who will be the one to really listen and that makes all the difference.  My disease was somewhat diagnosed during a pap smear by my GP, i think I mentioned that earlier.  Imagine that?  Not even a neurologist, let alone an MS specialist.  Just a kind Dr. who took the extra time to question something that seemed odd.  

If you get no satisfaction from this Neuro, then maybe consider going to one who specializes in MS.  It may be that some other disorder with neurological consequences is going on, so a neuro with more general experience may, in fact be in order.  

You can always make the appt with the  MS specialist now, then cancel it if you find that the Dr. on Friday is the one you want to keep.  It' s hard to keep an open mind when you have experienced 10 years of missed diagnoses.  Just know this, you are in good company because many of us have  had nearly a decade or more of guessing and putting up with the "alll in your head" syndrome that Drs seem to suffer from these days.  

Just walk in to the appointment confident as you would walk into court or your office. There is not a Dr around that understands how you feel better than you do, so you are the expert witness.  Dont be intimidated. Please let us know how the Friday visit goes or otherwise what you decide.  I will try to remember to say a prayer for you on Friday, but I am so forgetful lately..But I think God knows that and remembers for me!!!!

Karen

[unglued35]

Karen (and all) - thank you so much for your info. and encouragement to keep pushing for a dx. I now have 2 different questions: (1) I'm feeling pretty good these days (last 5-6), and suspect I'm in a "remission" - will this affect my neuro exam on Friday?  I've waited so long for an appointment, i don't want to cancel it now.  (2) Also, my Dr. on Fri. is not an MS specialist, but I do have a reference for one who is. Should I just go ahead and make that appointment now, or wait until I've seen the 1st neuro on Friday? I'm already going in defensively, thinking I'm going to get one of those condescending "it's all in your head" responses....That's what 10 years of missed dx will do to you...

[puppythreads]

Oh yes, I am glad you mentioned the MS hug.  I have had that for 7 months now, a totally new symptom after 12 plus years with MS. I have mentioned that to many Drs including neurologists and they have not heard of it, but my new neuro is very familiar.  Of course in this forum we all know what it is.  This underscores the importance of having a neuro who is experienced with MS.  Such a Dr will understand that there are a vast variety of manifestations of this disease and will know a zebra when he sees one!

Feel free to read my journal entries and you will see how I was misdiagnosed, totally dismissed by a neuro who should have known better, which  cost me 6 years of non-treatment and permanent damage to my nervous system.  Which is why he will be getting a very harsh letter from my family lawyer.  I am sure you can appreciate that !!  I dont believe in frivolous lawsuits, but this guy clearly needs to be warned and it will make me feel better because if it serves to educate him, maybe he will be careful with others like me...the totally atypical.  

Anyway, sorry to vent, but it is important that you follow your gut in this matter.

Mouse Bladder...that's cute!  But you know, you might want to have your GP or whoever you are comfortable with, catheterize you post void to see if there is much residual urine.  More than 100 cc is considered abnormal and may likely indicate a neurogenic bladder.  I dont know if I mentioned it yet (I have pretty bad cognitive issues) but a neurogenic bladder stays full and you only void the overflow, which is what causes the frequency.  I had the problem  for years before I was diagnosed..  In fact, my MS was initially suspected during a pap smear.  Talk about atypical!  My bladder was excessively full and when the Dr commented about it I said "No way, I just emptied it."  She said "No you didnt."  By the grace of God, she was sharp enough to order a brain MRI and bingo---I had a few lesions.  

[unglued35]

P.S. - I totally sympathize with the frequent urination. My mom calls me "mouse bladder" because whereever we are, I can guarantee I'm going to have to go. :-)

[unglued35]

Karen - I LOVE your analogy of the horses and zebras - particularly as an equestrian. :-) I spent my first year at UW-Madison, btw, but did lawschool at University of Virginia.  I loved Madison - still do. I found exactly the info. you're talking about with Vit. D - which is why I pushed my GP to get me a neuro and rheumy referral. After getting an appt. with a rheumy, she actually tossed the ball back to the neuro. because the ANA, sed rate, lyme titer, bloodwork, etc. was clear (save for the vit. d issue).  But I'm headed back to her if the neuro doesn't think it's MS after many tests. I did see an accupuncturist yesterday (take this for what it's worth - maybe nothing), who specializing in treating MS patients, and I told her my symptoms, and she said "You are a clone of my MS patient Katie."  Not that it's exactly a diagnosis, but at least I know I'm not going crazy - that there's SOMETHING going on.  And if it's not neurological, I think we need to re-visit the alternative auto-immune, rheumy route.  

My strongest inclination of all, is this stabbing pain in my ribcage - which, for 10 years, has plagued me, and which 5 doctors (4 specialists and 1 gp) cannot diagnose. It sure sounds suspiciously like the MS "hug," particularly because I know I already get muscle spasms in other areas of my body....

Thanks again for your input.

[puppythreads]

I too wish to welcome you and encourage you to hang in there and keep in touch.  I agree, a better MRI is needed as well as one on your c-spine and thoracic spine.  Some folks have lesions only in their spines.  

My first and continuing symptom of MS was a bladder that does not empty completely, so it sets me up for recurrent UTI's.  A bladder in retention often has symptoms of very frequent, unsatisfactory voiding, which for years I thought was because I had a small bladder capacity. I had Uti's off and on for years, which no one could explain.  

Yeast infections I have not heard of, but it makes sense it could be a component of an auto immune process.  Also, yeast and UTI often go hand in hand since the yeast migrates back and forth.

Low vitamin D sends up a red flag.  There is some research to indicate that low D actually can be a sign of an auto immune disease, though current thinking has been that low D causes it.  If you google low vitamin D and autoimmune you will pull up some helpful info.

If you have not seen a Rheumatologist, it might be a good idea to find one. They are very good at getting to the bottom of these sorts of mysteries.  I suspect you may have more than one thing going on, which can make it difficult.  My Rheumatologist ruled everything else out so it made it easy for my Neuro to make the MS diagnosis.  I have also been told that with the rheumatological disease such as Lupus, Sarcoidosis, RA, etc. it can take a long time before evidence shows up in blood tests.  My step-sister has had RA for 20 years and her blood tests still are normal.  If they had not biopsied the fluid in her swollen knee, they never would have diagnosed it.  

When  Drs hear hoofbeats, they look for horses and often overlook the occasional Zebra.  I was a zebra for many years, being led down wrong paths. If I have learned anything that I can pass along it is that we need to be pro-active and keep good notes.  You apprear to be doing just that so I believe you will get your answers.

By the way, I just moved back to my home state  from Wisconsin.  Did you study Law at UW?  I used to work in Madison.  

Take care and keep your chin up!

Karen

[unglued35]

Thanks so much, all. I'm very grateful for your input.  I have been negative for Lupus, Celiac (did a biopsy during my endoscopy 1 month ago), Thyroid disease, R.A., and some others that I can't think of right now.  I was not anemic in bloodwork as recent as 2 weeks old - here are the numbers: RBC was 4.31, and HGB was 13.8.  I don't know if it's relevant, but my platelet levels are down 100 points from 18 months ago when I had the fall from the horse and they ran another CBC.

Also, I need to ask forgiveness for a poor choice of words. I don't have "all-over" itching - just that it's in a lot of different, but localized places - left thigh (I scratched so hard this week, I bruised the leg this week), left side of scalp (no dandruff, etc. - not a mark on it), and my left forearm. So, I'm wondering if this is the "paresthesia" that some MS practitioners talk about?  

I mention the yeast infections because my GP has said without another cause they are often "auto-immune" in nature, and that they can be connected with MS. Does anyone have any other knowledge relevant to this strange symptom?
http://womenshealth.about.com/cs/yeastinfections/a/vagyeastinfecti.htm

Now, I'm wondering if there's something more insidious going on?  Guillan-Barre, for example?  I don't know if it's helpful, but on my mother's side, 4 out of her 5 immediate family members were striken with cancer, including (1) Non-Hodgkin's lymphoma, (2) Hairy-Cell Leukemia and (3) bladder cancer (this followed the removal of a spinal tumor and years of self-catheterization). My mother has been "unscathed," but has been told by researchers at the University of Chicago that she has "brittle chromosomes."  Whatever that means...

I've also had slow, but steady weight loss, too.  

Thanks again to everyone.  Here lately, some of the strange sensations have abated, and given way to a general feeling of being unsteady on my feet - dizzy, weak, disoriented.

[saveone]

Ess is right on.  However, I would suggest because of these symptoms, IBS, yeast infections, burning/tingling, RLS and several others you be tested for Celiac Disease.

Many of the symptoms you describe are characteristic and as Ess said you can have more than one thing going on.

Have you had a recent CBC.  I would be interested to know your HGB count, your ferritin level, and your iron saturation level.  Some of the things you describe can be symptoms of anemia...which may or may not be caused by Celiac Disease.  CD is often mistaken for IBS.

Your ancestry is relative to having an increased chance for CD.  Remember having CD does not rule out MS, Lyme or any of the other mimics.

Take care and I hope you find your answers.

Still looking for mine,
terry

[jensequitur]

Hey, unglued  - ess has said it all, but I just wanted to tell you to hang in there.  

[essdipity]

Welcome to our MS forum, unglued35. I'm really sorry about all the pain and distress you're having, and have been for many years.

Although some of what you describe sounds neurological, a great deal doesn't. Specifically, yeast infections, nausea, joint pain and all-over itching are not characteristic of MS. In fact, nothing 'all over' is likely to be MS, given the way the disease acts.

You say you've had Lyme disease ruled out, but perhaps you should revisit this ruling. You need at least 2 clear results from the Western Blot test (not some other test, such as Elisa) to be reasonably sure you don't have Lyme. I see you live in Maryland, which has a high Lyme incidence. You also need to rule out lupus and a lot of other MS mimics.

If you are not satisfied with your next neuro visit, I urge you to start over with another doctor. Gather up all your medical records and test results, and try for a decent MRI scan, with and without contrast. It's possible you have more than one ailment going on, of course, but the first priority is to see if one specific cause is at work.

Please read our Health Pages for lots more info. And don't give up the search for answers. This may require even more persistence than ever, but keep at it.

Best wishes,
ess

[unglued35]

*Bump* Sorry everyone. Just wanted to see if anyone had any thoughts?

[unglued35]

I wanted to add that I've had body-wide itching in repetitive areas, such as my scalp, and left thigh for the better part of six months, on and off, but it's been particularly pronounced since September. The itching is so bad I've broken blood vessels and causes bruises in spots - and this is not due to skin allergies, hives, dermatitis, eczema, etc.  Also, I am a 35 year old caucasian female (I add this for background information to help create a total picture).  I also have IBS (my first Gastro caught this about 8 years ago), and since my second pregnancy (I have 3 children), have developed a pattern of urinary tract infections.  This is brand-new to me.

Thank you to anyone willing to provide insight...