awaiting diagnosis

[LaylaAnne]

I have had 2 brain MRI's, one showed small foci of T2 hyperintensity, another showed nothing abnormal.  I don't remember the first MRI at all.  Memory problems...I have probable optic neuritis, awaiting VEP results.  I sometimes have slurred speech, terrible vertigo, low blood pressure (always had that). History of double vision episodes since age 21 (now 48) history of numbness and tingling in hands feet and back. Progressive loss of flexibilty, tripping over my own feet all the time. Dropping things, urinary problems, digestion problems, right hip pain, trigeminal neuralgia to the point that I have had uneccesary root canals that did not stop the pain. Terrible spasms in my lower legs and back and I feel pulling from the base of my neck to my tail bone if I put my head down forward, bouts of crippling depression that does not respond to medication that have at times become suicidal and I have been hospitalized for it. inability to sleep, terrible itching.. new onset of headaches that last as long as a month at a time.I do not have diabetes, high blood pressure or a host of other possible ailments.  I have had a multitude of test done now for many autoimmune disorders. One doctor says I have Fibromyalgia, but fibro meds do nothing for the symptoms. I was diagnosed with vestibular neuritis about 2 years ago. I was told it was self limiting and would go away. I have had vertigo now for 3 years, on and off. It never completely goes away. My eyesight has also not cleared although I was told that was also self limiting.  I get weird sensations, like my scalp crawling, or like cold water running down my leg, or like an electric shock down my arm, or leg, or back.  Just so many odd things.  Does it sound like MS? Or not. I see the neurologist again on August 17th and the waiting is driving me nuts!


This discussion is related to Do I have MS?.

[LaylaAnne]

Oh BTW the spinal tap was normal. It only showed some RBC's but less in 3rd tube then 1st, so indicitive of only a traumatic tap and nothing more.  Culture grew nothing.

[LaylaAnne]

It is 11 of 14 pressure points.  I do have tenderness in those spots, and I also NOW have a good deal of pain that I live with daily.  But the pain is joint and bone related and uneffected by Ibuprofen, Celebrex, Vioxx, Ultram, Percocet. Flexoril provides limited help.  I have been told by many people that I have very tight muscles, and also visible spasms in my calf muscles. As well as those pesky headaches.  I am about to turn 48 and started having what they are calling migraines without aura about 18 months ago.  Maybe hormone related as I am perimenopausal?  I don't know. I go back and forth.  I just want to KNOW something difinitively.

[Deb61]

You have a very complicated case, and I feel for you.  It will take a very good neuro, rheumy, or opthamologist to help put the puzzle together for you.  I would encourage all of your specialists to work together to figure things out.  You have some very significant problems, but not one thing screams any particular disease now that I reread what you've posted.  Could it be MS?  I think it's possible because of the neurological symptoms.  However, other diseases can cause those symptoms.  You mentioned that you had fever among the symptoms.  I am wondering about the results of your spinal tap.  Did it show infection?  I would get a copy of that spinal tap.  

Could it be lupus?  This could be a likely explanation in what I know about lupus.  Lupus can cause fever, neurological symptoms, pain, optic neuritis, etc.  Speaking of optic neuritis . . . It is possible to have optic neuritis and for it not to be seen in the eye.  Especially if the neuritis is behind the eye.  The VEP will shed light on that, so perhaps your neuro will have something more for you to go on at your next visit.  

I would find yourself a new rheumy.  I've never heard of fibromyalgia without pain.  Fibromyalgia is not a disease, it is a syndrome.  The diagnosis is made after pain is made from slight pressure on the pressure points by the physician in I forget how many spots on your body.  What he said is untrue.  Plus, there are many other rheumatological diseases and autoimmune diseases besides lupus than can cause some of the symptoms you've mentioned.  A really good rheumy could be the person that helps figure things out for you.

It is possible to have more than one autoimmune disease, too.  That may be why your case is complicated.

Best wishes,
Deb

[LaylaAnne]

Julie,
     I was just rereading your post.  I never seem to comprehend everything the first time around, LOL. Anyway, yes, I have had a multitude of blood tests, first by my rheumatologist, and more even by this neuro guy. Lyme disease, the cat disease, a bunch of stuff I have never heard of.  Way back when I had the spinal tap, they did not test for O-bands though. The fluid is 18 months old now, if they still have it, I don't know if they can test it now or if I would have to have another one.  That is NOT a fun test. I went to the rheumo guy not for any pain issues, but for a myriad of other issues, like bowel and digestional problems, itching, twitches, just a ton of odd things and I thought I might have Lupus, anyway, he diagnosed Fibro which I thought was odd without the pain issue. So I never did trust that diagnosis.  He is not a person I respect or value, but he does give me my script for restoril, or I would never have any sleep.  I am on Neurontin, and recently started Savella which has done nothing but clear my head (which is a miracle)  It's the first time I have been able to think in over 4 years. Hopefully it's improving my memory as well. It is helping my short term memory, that much I can tell. I see the neuro guy August 17th for the results of my VEP  and something else they tested. I can't recall just now.  Anyway, I write down EVERYTHING.  I used to have such an excellent memory that this is really frustrating. OH, the other test was an ERG, electroretinagram to see why I can't see.  The doctor had mentioned something called Big Black Blindspot Syndrome, which from what I have been able to find out, means very little. The visual problem was very annoying and troublesome when it first started.  I have kind of gotten used to it now.  Although its definitely still there and possibly more involved than before, and I still get the dancing lights and all.  Nothing has changed since January when I just woke up with it. At points its like seeing out the bottom of a coke bottle, other places, just blackness. Sometimes my vision is blurry, I get a lot of floaters which are annoying. As well as all the other stuff...I just want an answer, and I want it NOW.  Patience is a virtue I have never had a lot of....The 17th seems like years away...but I had to wait 2 months just to get the tests done...I am driving myself crazy.

[LaylaAnne]

The last MRI was with and without Gadolinium contrast and with fat suppression but it was T1 and not T2, the strength of the machine I don't know at all.  That was the one that showed nothing although when we look at here (I work in a hospital) we can see a large lesion ( I can't recall where it was.  But anyway, from what I have been able to learn most of my symptoms point to brain stem lesions and spinal lesions, so I feel that is what we need to MRI.  The doctor I am seeing is an opthal-neurologist but his specialty is Cerebrovascular and not MS.  I was seeing him due to the optic neuritis.  When I last saw him he told me he did not feel it was optic neuritis because he could not "see anything", the retina specialist I saw told me "you can't see it visually" but there is nothing wrong with my retinas.  In the meantime I have little or no sight on the right side of my right eye.  This has been since January.  I did have spinal tap about 18 months ago through another neurologist but it was unrelated to any of this. I had had a headache that lasted for over a month (to the point I was unable to work) and they were looking for meningitis (I also had a high fever).  The ER found nothing in the spinal tap and sent me home. I eventually found relief from the headache with Flexoril.  That has been 18 months ago.  I am still getting headaches they used to be limited to the right side of my head by my eye, now they are on both sides of my head, and I just keep working. Nothing works for them but a flexoril.  I am on the first day of 5 12 hour shifts in a row.  Let's see if I live through it.  Last week I did 4 12's and I spent the weekend with crawling, painful spasms across my mid and lower abdomen.  I was almost incapacitated by them Friday night.  My husbands answer is "I think we should go the ER".  I have been there enough times to know they are just going to send me home and tell me I "Have a virus" and I am out $100 dollars.  I just lived through it.  I still have them a little bit today, but not as severe and not as frequent.  And, so far, no headache.
     I have an appointment with a surgeon tomorrow at 10:00 am, here in the bulding where I work.  The ER last time thought I was having gallbladder issues.  So I am going to see this guy.  I will keep you informed.

[Deb61]

Yes, many of your symptoms sound like MS to me.  However, I'm not a doctor either.  There's lots of mimics of MS that give shockingly similiar symptoms--many of the problems I've never heard of and I'm not knowledgeable in medicince to even begin to tell you about those.  I'd visit the Health Pages (see upper right hand corner) to get an idea of what I'm talking about.  

Because diagnosing MS usually involves ruling out other causes, it makes diagnosis very difficult for some--especially if you don't have anything screaming MS on your brain MRI.  You may want to also explore MRI's in the Health Pages.  There are many things to consider in regards to the MRI.  Did you have contrast?  Was your MRI done on a strong enough machine (it's recommended that it be done on the strongest machine possible)?  Also, have you had a lumbar puncture?  This test may also help with diagnosis.  

I guess the biggest question I have is what type of doctor are you seeing?  Are you seeing a neurologist?  Are you seeing an MS specialist?  With your set of symptoms, I'd see the neurologist that specializes in MS (MS specialist).  It's very important that you see someone knowledgeable about MS.  MS is often times not a clearly evident for some people.  This certainly doesn't mean that you don't have major problems.  My sister has major problems and she doesn't have large lesions that were evident in her MRIs.  It was the location of those hiding-out lesions that have caused her major problems--on her brain stem.  She has severe disability and pain.  

So, see the best doctor you can--preferably a neurologist specializing in MS.  Get your MRIs done on the best machine available with contrast agent.   AND, stay with this forum--you'll find many supportive and caring people.

Deb

[HVAC]

Diagnosing MS is not easy. My diagnosis took two years. Being patient and not freaking out were very hard for me.

Hang in there,

Alex

[Sarahsmom46]

Welcome to the MS Forum.  You are in a good place for asking questions about possible MS.  We have many members who have not yet been diagnosed and can relate to what you are going through right now.  Again, welcome.

The symptoms you describe sound like MS to me, but I'm not a doctor of course.  You will be seeing the neuro next month?  I can imagine he might want to do a spinal tap unless he is comfortable giving a diagnosis with what he sees in your past medical tests.  Have you been ruled out for MS mimicks though extensive blood tests yet?  

The waiting is the hardest.  It took me exactly a year of testing and doctor visits and more testing before I was given an MS diagnosis.  Some get their diagnosis after only a few office visits and review of test results.  I hope whatever your ultimate diagnosis is, that you won't have to wait too long.  

You can be assured that others from our friendly and caring forum will be along to offer their feedback.  Take care and hang in there while you wait for answers.

My best,

Julie (Sarahsmom)