MS like symptons, no positive diagnosis - what next?

[2kidsmom]

See your prev answer to me(Aug)"what should i do now?"...  HISTORY: Scale(1-best 10-worst)CONSTANT:dizziness(10),light headedness(10),weakness in limbs(9),fatigue(7),incoordination(9)(e.g. feel like going to fall),short term memory(6),inability to focus(7), ringing ears(9).SOMETIMES:numbness in left arm(5),tingling (pins/needles) in limbs(5). Symptoms have been increasing over time(years)-coming ang going,now mostly constant and seem to increase after being in heat (e.g. shower, etc). TESTS: MRI(normal),EMG(normal),BAER/Visual(VER)(normal),bloodwork(normal). DIAGNOSIS:Rhumatol.. ruled out Chronic fatigue, fybromalgia,Lymes,etc. Neurologist wants a Spinal Tap next. Plan to get 2nd opinion in Jan from U of Penn (no insur 'til then) NOW WHAT? What else (other than MS) could it be?The only thing not ruled out is MS, despite normal testing.  I've read, even the spinal could be normal & still be MS.  If so(normal spinal), what should i do next?  Doctors seem stumped.  Can they treat me for MS without postive diagnosis and see if I respond?  They are not giving me/doing anything to make me feel better.  No diagnosis either.  If normal spinal tap - what next? I cannot care for my 2 small children w/o assistant from family-Thank You for taking the time to help others that are going through difficult times...your words and knowledge are comforting.

[Annika]

Dear Korie,

How very frustrating.  My own feeling as a patient (who has very different issues from your particular ones) is that complicated neurologic disorders may need many different expert brains to figure out what's going on.  Don't be afraid of going for second, third opinions, as long as you have some central doctor who can follow the information as it comes back.  If Mayo seems the natural place to go, that might be one option.  The main danger with doctor shopping is if the information doesn't somehow get collected by one person who knows you well and can help make sense of this for you.  Other than that, I think getting consulting opinions can be very useful.  

In addition to what's already been considered, have they thought about intermittent hydrocephalus?  That can sometimes be associated with transient sensory and cognitive problems.  I'm not saying this is a perfect fit for your symptoms, but perhaps another thing to think about.  There are some other people on the board who have had this.

Sincerely,
Annika

[t_anunson]

Hi Annika,

Thanks for your comments. I don`t really think I have arachnoiditis, or even MS, I hope not at least, and I`m sorry to hear that you do have arachnoiditis. I hope you get completely well soon. I have an appointment with the neuro doctor tommorrow. He`s gonna be checking my neck MRI to see if I have a bulging neck disk. This will just be another test to help rule stuff out. Because my symptoms seem to come on and then dissapear...this thing seems to be more benign than anything. I really don`t think it was the epidural related though, because I didn`t get a headache or taste metallic in my mouth. I think it just slowed my labor and caused me to throw up during labor. Thanks so much, I`ll update ya on me....

[Korie]

I have been reading your comments....Approximately 2 years ago I had the onset of problems that most all of you have discussed.  It started out that I was told I had a TIA.  Approx 8 mos after the initial episode another happened.  I was living daily in these episodes.  My face was numb, I was tired, my hand and legs were numb.  I felt like I had creepy crawly in my head, my speech was terrible, after episodes or even during I would start to stutter, or I would transpose words.  I felt like a complete idiot.  I went thru a few neurologist.  I was tested like most of you for everything under the sun, Vasculitis, I had a brain angiogram.  I had the spinal tap for the MS, all of my tests blood, ekg's, cat scans MRI, Rheum tests, I even saw a Hematologist all tests were normal.  A couple of times my ANA came back elevated. They looked into Lupus.  Still results came back normal.

Thru lack of anything else I was given the diagnosis Acephalgic Migraine.  (Aura of Migraine).  I DONT GET HEADACHES....I JUST GO NUMB LIKE I AM STROKING OUT.... I have had, on occasions those flash spots, which my neurologist says is Migrainal related.  However, I only get those spots occasionally.  Never during an episode nor after.  My hearing would go.  I can tell when an episode is coming if my hearing starts to go wacky.  I not only get ringing.  But I feel like someone is plugging up one ear and I can't hear out of it.....

I was given Depakote (500mg a day) and Verapamil (blood pressure med, even though mine was not high)  The combo of the drugs have worked for me.  Although I have had breakthru with the numbness and tingling and a few times I felt like I was paralyzed just on the right side of my body.  The doctor is ready to remove medicine.  I am losing hair in the drodes....1/2 my hair is allready gone.  I fear that taking me off this med, which is an antiseizure/migraine pill.  Will spiral me back in to the daily  hell I lived in over ayear ago.....Why do I write this..I don't believe AURA OF MIGRAINE....I hardly believe that what I have is migraine I read all of your comments and realize I still am in the same boat.  I only had medicine to work for a while, now I am scared to death about living without medication that works, Then I am afraid of being on medication to long.  What if dementia happens earlier to me because of my "brain" problems, what if I am being misdiagnosed.  But I really don't want to go back thru the hospital and test hell.  I literally spent 3 months in and out of hospitals.  TERRIFIED.  I am 32 now a mother of 2 and I was 30 when this first started....Is the brain to hard to get correct diagnosis,  I follow up with my nuero in Jan.  I am considering going to MAYO for another opinion.  And when I read all of these medical terms I have never heard of makes me want to make sure that all of those tests originally run, had some of these diagnosis in mind.??????????

[Annika]

Hello,

This is just an addendum to what I wrote before.  I don't mean to imply that arachnoiditis and epidural complications are the only causes for  neurological symptoms that seem to come on during the period following childbirth.  I just meant to explain this one condition (which I have myself, and so know more about than other disorders).  Childbirth itself, and carrying a heavy infant, can cause mechanical strain to the spine.  Some women may have an underlying disk problem or other spinal abnormality, that suddenly gets worse during the period after childbirth.  So that's worth looking for too.  If most of the symptoms are in the upper body, one might think about some sort of nerve compression around the cervical spine.

Sincerely,
Annika

[Annika]

Dear TabA,

I have arachnoid adhesions, commonly referred to as "arachnoiditis".  It's kind of a misnomer, since the "itis" seems to imply some sort of ongoing inflammation within the spine (in the arachnoid layer).  All I have is the adhesive scarring which results from that inflammation.  The source of that original inflammation, and the eventual scarring, was surgery to remove a cauda equina tumor when I was 29 (I'm 32 now).  

So my arachnoid adhesions are not the result of an epidural.  However, arachnoiditis is a known possible complication of epidurals, and is thought to occur sometimes if the epidural needle accidentally punctures the dura to allow blood and/or other substances to enter the CSF space inside the spinal canal.  Blood inside the intradural space is the main common trigger for arachnoiditis/arachnoid adhesions.  That's why blood patches for CSF leaks can cause this problem, as can spinal anesthesia, spinal trauma, lumbar punctures (again, if they cause bleeding into the CSF), and, most especially, spinal surgery.  I have to say that this is still felt to be a rare complication of epidurals/spinals/LP's, and most people have these procedures without any problems.

This has been described in medical papers, in medical textbooks, and many versions of the same basic story tend to get told by patients who end up diagnosed with arachnoiditis.  There are some of those stories on this board as well, if you go to the archives.  However, a big caution - these tend to be severe cases of arachnoiditis.  Mine is pretty bad, not because I have a lot of scar tissue (I don't - you can barely see it on MRI, even though it was confirmed on reoperation to try to correct my problem), but because it is tethering my spinal cord.

Most of the information on arachnoiditis will talk about the severe cases.  However, there's a huge spectrum.  The basic abnormality is just that there are spots of scar tissue inside the spinal canal that are tugging on the nerves and/or cord.  The reason we know there's a spectrum of symptoms is that many of us have a gradual onset of problems, so you can see how the early, subtle symptoms evolve into something that becomes easier to diagnose with time.  There may be people out there, though, with minimal scarring, who never progress beyond these early, puzzling symptoms.  

Scarring inside the spinal canal can cause a variety of symptoms, and one need not have all of them.  These symptoms include:  burning pain, squeezing pain, shooting pain, aching pain.  There may or may not be frequent muscle twitches (fasciculations), weakness, persistent muscle stiffness and tendon tightness (due to the pulling on the cord itself).  There may not be muscle symptoms at all - it took a year of other symptoms before I had any problems with my muscles.  There may or may not be bowel/bladder/sexual problems of varying degrees of severity.  Usually the lower body is affected most, but there may be upper body symptoms too - depending on where the scarring is, and whether it's pulling on the entire spinal cord (that's the case with me).

One key feature of arachnoiditis pain is that it tends to be very positional.        Of course, that's true of many other disorders as well - but not so much the systemic diseases that affect nerve function in non-mechanical ways, like B12 deficiency or MS.

Arachnoiditis is diagnosed by history, and by MRI - but MRI is not foolproof, as not all scar tissue will show up in such a way that you can clearly identify it.  In general, the radiologist needs to be told to look for this abnormality.  He will look for evidence of nerve clumping and/or inflammation/scarrgin surrounding the nerve roots.

I don't want you to be unnecessarily scared, although I'm afraid that's exactly what I've just managed to do.  So let me just say that someone with mild arachnoid adhesions can do a lot by gentle physical therapy and stretching.  In genneral, activity is good, to keep things loose - but being careful not to put a lot of stress on the spine, or to do exercises thhat involve a lot of sudden movement of the spine.

If a person has arachnoid adhesions and doesn't know this is the source of her problem, she might undergo all sorts of invasive procedures that are only likely to make the scarring worse, and she might miss out on the benefits of physical therapy.  So that's why I think it's important for people to be aware of this diagnosis.  In addition to frequently being misdiagnosed as MS, another common misdiagnosis for patients with arachnoiditis is myofascial pain syndrome or fibromyalgia.  But of course, people should also exhaust all the other possible explanations for their symptoms as well.

Again, I don't mean to imply this is what I think is going on with you.  I know just how this all sounds, and I feel very bad about it.  The only way to explain this problem is to explain what's known about the worse cases.  I don't mean this to scare people who may have other explanations for their symptoms, or who may have very mild symptoms from arachnoid adhesions.

Sincerely,
Annika

[t_anunson]

Do you have arachnoiditis? If not whats your diagnosis? Did you have an epidural?