Help with understanding MS symptoms

Hello All,
I have just started to piece together my long history of symptoms that no one ever seems to be able to diagnose.  And at the same time, I fear that when I go to the doctor and express my concerns about my symptoms being MS, I am concerned that I too will be disregarded as a hypochondriac.  I have had muscular problems for at least 20 years.  I always blamed it on a car accident.  However, I have also had what feels like chronic fatigue, tight muscles, sharp, aching leg pain, chronic hand numbness that worsens at night as well as tingling that happens at night in addition to the worsening numbness.  I also have had bouts of depression throughout the years.  In the last 6 months or so, I have had increasing mood swings.  So bad that my husband has commented about the extremely quick switches.  We have a joke in our house about my poor memory.  I will ask my husband and daughter a question and only a few minutes later, I ask the same question again and sometimes a second time.  I never thought too much about it.  But now I think that it may be one of the cognitive symptoms of MS.  Especially since I also have felt like for the past few years that I am not as sharp as I once was.  And I definitely relate to the symptom of word finding.  When I was a kid I would have episodes where I would loose my vision (everything would go black) and would last about 2 mins then would resolve.  Now I have what I call a floater or at least that's what the last doctor I asked about called it.  It's like a black piece of lint in my left eye that follows my eye movements.  I also have urinary frequency and bouts of constipation and diarrhea.  I am 35 and very confused about all this.  Have you experienced any of the symptoms I have described?  Thank you for any advice you can offer.

Angel  

[Quixotic1]

Hi, Welcome to the forum.  People will be by later and we will have some good advice as to how to view the symptoms you have and where to go with them.  I am a physician, but not a neurologist and am no longer in preactice.  I have MS and try to keep some of the medical and new information flowing.  I'll be back later, but hoperfully others will pop in.  I think you found the right place.  Quix

[mokibear]

I'm sorry to hear that you have been going through those symptoms for so long and that  no one has given you answers.  I have not been diagnosed with anything and was told by one a** to get my head checked. But what I'm finding out from being on here is that you can not give up!! If you don't get an answer from one you find another. I have some of the symptoms you have and some you have not listed. I have memory problems, eye trouble, numbness, tremors, extreme fatigue, extreme shaking some bowel problems, depression,pain and my newest is shooting pain. I have not had the neuro rule out MS he just says probably not MS. I am in the process of finding a new neuro. You have definetly come to the right place. Quix is great and if you have a chance read some of her threads. She is a wealth of information as are others on this forum. I really hope you find some hope being on here, I know I have.
My prayers are with you
Moki

[memere_morin]

Hi, Welcome to the forum....my name in the forum it's ''memere_morin"...you should go check my story. I have the same things as you...the black spot that is following your eyes movement everywhere you look....it's been 1 month that i have that spot. It's really annoying. I don't know if it's another sign of MS or it's just my fatigue?? well i told my Dr about that, and he kinda ignored it.

Well im glad that you joined the forum!! Hope that they find what's going on with you!

Denise

[Quixotic1]

Hi, after all this, I remembered that you never got a primary response from me.

I have been reading your various posts.  First I want to comment on the multiple episodes of what sounds like orthostatic syncope.  You stand up, or raise your arms, or awaken and get up, feel lightheaded, have your vision darken and faint.  It is fairly common in the adolescent years, but yours have continued, and I think you need a workup for (neuro)cardiogenic syncope.  You were a cardiac RN and never told your docs (colleagues) about this???  Or did you?  You need a tiltable test.  There are various causes, none that I am particularly informed about, but it can be a very serious thing.  It may be an autonomic neuropathy of either the parasympathetic (most usual and results from vagal-overstimulation and bradycardia) alone or in combination with a disruption also of the sympathetic system.  This second can result in syncope with tachycardia, called POTS - Postural Orthostatic Tachycardia Syndrome.  Neither of these is super common in MS, but they can occur.

The lumping of the symptoms of fatigue, tight muscles, leg pain and hand numbness is hard to evaluate.  Most doctors view MS (and indeed, 85% will be this way) as a waxing and waning of symptoms.  They look for onset of an attack/relapse/flare during which symptoms (old and/or new) worsen, last a while and then resolve, at least partially.  Sometime later, symptoms recur.  Each attack may be the same, share some symptoms or be completely different as the previous ones.  Soem people have ongoing symptoms, like fatigue, heat intolerance, cognitive problems which endure also between attacks, but still there is some improvement then worsening with relapses.

Could you redescribe your various symptoms in this light?  Or are they things that appeared and never changed, improved or went away?

Depression is common, but it is far more common in MS.  Researchers feel that it is partially due to the generalized slowing of brain functions.  When MS presents with depression it is often missed and the person is sidetracked to the psychiatric realm with all the subsequent vague, invisible and subjective complaints written off to depression and stress.  This is extemely hard on one's ego, and eventually they may begin to buy into the fact that they are nuts.  To this I say, "NUTS!!!!"  I believe, as do a growing number of neuropsych people that a major depression with many "psychosomatic-sounding complaints"  deserves an initial MRI.

Many people's first symptoms in MS are psychiatric and they are the most likely to go a long time without diagnosis.

The other thing that is classic - absolutely classic - in MS is emotional lability.  Rapid swings of emotion and reactions that are way out of proportion to things that happen.  A bit of kidding may prompt hysterical sobs as we take something the wrong way.  We, who always before had such a great sense of humor and dry wit.  Or during an physical exam, something won't work, or our reflexes may be off the wall hyper, and we laugh hysterically and uncontrollably.  It's called the "Pseudobulbar Effect."   Several members of the forum have reported these episodes.  Some were referred to psych.  One, and I wish I remembered who, couldn't walk properly in the ER and laughed hyterically.  After confirming that she wasn't high, the alert doctor brought up MS to her husband.  Could all this appear to be a rapidly cycling bipolar individual?  Perhaps.  I don't know if anything I said rang true for you, but it's an important point for all neurologists (and us) to know.

Another type of "pyschiatric" phenomenon that is seen in MS is the appearance of uncontrollable and inappropriate behavior.  It seems the example that is always given is suddenly heightened sexual acting out.  But, it could take many forms, such as sudden swearing in a previously very proper person.  Or "loudness" in someone who was quiet and restrained before.

Does any of this sound like your rapidly cycling emotions?  I copied and pasted from a response a few weeks ago.

Floaters are common in the general population, but a sudden increase should alert the neuro of possible eye disease.  You should have a VEP - Visual Evoked Potential which measures the signal velocity and wave form of the optic nerve.

With regard to the urinary frequency, do you urinate a normal amount?  Do you have trouble initiating the flow, have stress or urge incontinence?  Do you feel like you just can quite empty the bladder?  35 is yound.  How many kids have you had?

Alternating diarrhea and constipation sounds more like a GI process than MS.  Have you seen anyone for this or just managed on your own?  One thing you might consider is the Autoimmune Celiac Disease or Gluten Hypersensitivity.  It can cause vague GI problems, and any manner of neuropathic problems.  It can easiy mimic MS.

Pain and pain syndromes are common in MS.  Many people complain of various sever and disabling pains that "don't make sense".  That's because the lesions and where they occur in MS don't make sense.

As far as the precipitous and projectile vomiting immediately upon eating something, This sounds like a severe, intermittent dysmotility or lower esphageal spasm.  Once the vomiting occurs the first time that will often trigger repeated emesis until nothing is left.  You need a cine-swallow study, with a careful look at the esophagus and probably a gastric emptying time.

If you put these problems into timeline that shows the episodic nature (if there is one) or shows when and how each one has appeared and whether it has changed.  Be descriptive, but not too wordy.  Read the "Timeline 101" thread for hints.  Go in knowing in your heart that something is wrong and know your history I do not think you will be dismissed.  If the neuro starts to focus on the depression, tell them honestly.  "Yes, I know depression and how it affects me and this is different!"

I fear that RN's are often dismissed by doc's, as are colleagues.  We represent the fall that they don't want to acknowledge.  You need to be firm, but I would not suggest or try to lead them toward a specific diagnosis.  Make sure they hear from you that you have been ignoring things for a long time and now you can no longer ignore that something is very wrong.  Heck, the very fact that you no longer trust yourself to be steady as a rock in the cath lab is important info.  I left medicine after a close call when my brain wouldn't work, and still come to tears when I recall that terror.  The baby was fine, but I wasn't.

Whether this is MS, is can't say.  Something is definitely going on.  You are no crazier than I am.  You need a thorough neurological exam, an MRI of brain and spine with and without contrast, testing for causes of myelopathy, including a Western blot for Lyme disease, and a workup for autoimmune diseases and vasculitides.  The lifelong syncopal episodes demand a tilt table test.

What are the odds that the first neuro will pat you on both your heads??  From the experience of this forum, rather high, but, I think most people are not so dismissed.  If depression is running rather high and you may flip into tears, then have your husband go with you.  It's not fair, but many doctors hold back on their dismissiveness with someone else, especially a man, along.

We can talk about the timeline next.  I hope this has been helpful, even though you waited a good bit for it.  We still need some specific information from you.  You fear "dismissal", being treated as though you were a hypochondriac.  Has this already happened?

Quix