No Lesions after ALL this time??

[Chrystalheart]

I'm really confused.  I was diagnosed with Fibromyalgia 16 years ago and promptly hit by a car.  After I was hit by the car (I hit my head, but didn't lose consciousness), I had all kinds of cascading problems (these started around 2 years later and gradually accummulated over time) - memory problems, other cognitive problems (verbal, written, etc), increasing muscle weakness (having to rest after every step on a staircase or every 10-15 steps walking flat out, not being able to grip properly or pull, push, lift; using hands to lift legs up), buckling joints, bands of tightness around my torso (sounds like MS hug), eye blurring, gait problems (scissor walking, toe dragging, shuffling feet), fatigue, skin sensitivity, restless leg, occasional urinary incontinence and urgency, tremors, sensitivity to cold and shivering (even when it's not cold), sleep disorder (hypersomnalence), hypoglycemia, occasionally collapse to the ground after exercise, and most recently estrogen dominance (and of course pain and tender points, which is what resulted in the initial fibro diagnosis).  Typically, whenever a problem emergerges, it is a super big problem that over time either goes away entirely (sleep disorder) or partially (everything else).    All of this has been lumped in with fibromyalgia by my doctors and rheumatologists over the years.  But, lately my doctor (and physical therapist) have opined that some of this stuff doesn't seem like fibro (and I think they're correct).

This sounds like MS, right?  It's by far the closest thing I've found.  The only thing I don't think is a good fit for MS is that I like being warm.  I hate the cold.  I haven't noticed my symptoms getting worse when I'm hot (although perhaps this is why I sometimes collapse after exercise, I don't know).

I finally went to see a neurologist last month.  My left knee reflex was pretty hyper.  I hadn't heard of that before, but since have seen some documentation on this in doing research.  She took a vat of blood (testing thyroid and for lupus) and ordered MRIs for cervical spine and brain with and without contrast.  Yesterday I found out the MRIs are all clear. (Blood work isn't back yet.)

Now, I understand that sometimes MRIs are clear of lesions when you have symptoms.  But, it was my understanding (and perhaps I'm wrong here) that eventually lesions would show up - that it was just a matter of time.  It's been 14 years and I have obvious ongoing mobility and cognitive problems.  I expected to have a lot of scarring.  Am I wrong about this being MS?  Is there something else that has these sort of symptoms?  

It's getting bad enough that I may have to start trying to get an accommodation at work and I worry additionally about losing my job.  Over time I've become increasingly disabled.  I've used a cane intermittantly since 1995.  I stopped programming and found another IT job that has process guides I can refer to because my memory is so bad and I have trouble sometimes processing logic.  I am not always safe to drive.  And the newer gait problems are causing me to fall more often.  A diagnosis is important to safe guard my future.  Any helpful information or commentary to point me a direction is very welcome.

It is very frustrating have a mystery disorder.

Grrr!!

Thanks for your help.

Jen

[wadeheather]

Many of us here can understand your frustration of being in limbo.  Welcome! A lot of the symptoms that you listed are consistant with many of ours, which are all different. None of us are doctors or can diagnose you, but we are definately here for support!

As far as having a clear MRI, that's a good thing. Though it's hard to accept because at least then there would be an answer, right?  At least that's how I feel and I recently had a clean MRI too.

Be strong! And stay with us!

[Weakandfalling]

I empathize with you!!  There are other neurologic conditions, besides MS, that have those symptoms.  May be time for you to pursue being checked out for those other conditions.  

Also, get your MRI films and have some other qualified people read them.  Also always be sure your get your reports.  I suggest your reading the section on this website, I think in the health pages, about all the reasons why an MRI could be negative and you could still have MS.  Quixotic1 wrote it and it is EXCELLENT!  Please read it - you'll be glad you did!!

WAF

[jensequitur]

Did they evaluate you for brain atrophy?  Sometimes you can see evidence of MS damage through brain shrinkage, even if there are no lesions.

[Chrystalheart]

Wouldn't you have to have several MRIs over time to know if there is brain atrophy?  Wouldn't it have to be comparative? Otherwise, how would they know what your brain volume used to be?

I have also been doing some more research and found this list of things similar to MS:

Lupus
Behcet's
Neurosarcoidosis
ADEM
Transverse Myelitis
Sjogren's Syndrome
Lyme
Brucellosis
Myasthenia Gravis
Fibromyalgia
HTLV1 and 2
Devics Disease
Celiac
B-12 deficiency
Thyroid
Syphilis
Vascular Disease
Connective Tissue Disease

and looked again at the lists of tests my neuro ordered (I wrote them down, because my memory is unreliable) and saw there were others I had forgotten about: ESR, CRP, ANA panel, TSH, T3, T4, Free T3, and B12.

I've been researching this list today.  One thing my Mom mentioned was to tell her I used to live in the orient (Taiwan) - and interestingly, HTLV1 and 2 are from tropical climates.  I also have severely dry eyes - and never thought to mention that.

I'm really hoping that the ESR, CRP and/or ANA panel show something, because if I have one more doctor treat me like I'm making stuff up I may just implode.  That's why I left it go so long before getting a neuro.  It's so demoralizing to have to prove over and over again that I have these problems when they're intermittant.  It's easier for me emotionally to deal with the problems than deal with the doctors.

Happily (sort of), I had a pretty severe episode during my last physical therapy appointment.  The P/T was able to document the severe muscle weakness and tremors in medical terms on her report.  It's the first time I have had such obvious symptoms while at the doctor's office.  

I am at least, also, at a very good place for neuro diagnosis.  I didn't realize it at the time I made my appointment, but my doctor is at the Barrows Neurological Institute in Phoenix, AZ, in the movement disorders department.  Apparently Barrows is very good.  I hope so.  I've done really, really well for the last 14 years managing my condition and putting in place coping mechanisms and compensating behaviors, but its gotten so bad over the last year that I have to confess I'm scared.  

Thanks for writing.  The support is very welcome.

Jen

[jensequitur]

They measure the csf space in the ventricles and around the brain - they know what a normal person's csf space will be, so they can compare yours to that.

[sllowe]

Chrystalheart -

Welcome to the forum.  There are so many conditions and diseases with similiar and overlapping symptoms and where MS is a concern it's really important for all mimics to be investigated.  It's equally important to be careful to not self diagnosis.  Our world wide web is filled with so much information it won't help with the confusion.
Don't get me wrong, when you are uncomfortable with a diagnosis you should always seek 2nd opinions if not more when needed.  And, your surely in good hands with our forum.

There is so much information here about MS and lots of us with differential diagnosis too.  Hope you enjoy meeting us and reading our health pages.  In the meantime, I think it would be good no matter were the next appt. leads you to get together a timeline, and our health pages can guide you through that.  So for starters it would go something like this:

1993 - dx'd with fibro
Promptly ? (add a date to this) hit by a car and list your symptoms
Cascading problems ? (describe them)

Symptoms (date when possible)
  - memory problems, other (describe) cognitive problems
  - verbal, written, etc (describe it)
  - increasing muscle weakness, you described it here: having to rest after every step on a staircase or every 10-15 steps walking flat out, not being able to grip properly or pull, push, lift; using hands to lift legs up
- buckling joints, bands of tightness around my torso
- sounds like MS hug
- eye blurring, gait problems (scissor walking, toe dragging, shuffling feet), fatigue, skin

Hope this helps.  

-Shell
    

[Weakandfalling]

I looked at your list, but didn't see ALS listed:  It should be there.  I know that many Internet medical sites omit ALS from their categories, pretending it doesn't exist, but it does exist and it is very similar to MS!!  I hope you don't have it.  It's about as common as MS though.

Second, the "fibromyalgia" diagnosis seems to be what neurologists and other doctors come up with when they really don't have an answer.  That happened to me too, a couple of years ago, and to many others I know.  My neuro knew there was something very much wrong with me but didn't know what it was:  Hence the last-minute "fibromyalgia" diagnosis out of his mouth which really surprised me since fibromyalgia involves pain and I just don't have ANY muscle or joint pain whatsoever (except during spasms).  Whether it fits or not, "fibromyalgia' seems to be the "diagnosis of choice" when they don't really know what's wrong!

WAF

[Weakandfalling]

Hi, again,

Regarding your questions: "Wouldn't you have to have several MRIs over time to know if there is brain atrophy?  Wouldn't it have to be comparative? Otherwise, how would they know what your brain volume used to be?"   The answer is no!

You can look at a brain MRI and if there is a gap between the brain and skull, it's brain atrophy.  There should not be a gap there.  It turns out there was quite a large gap between my brain and skull on my most recent exam.  That is how, even though the careless radiologist said in his official report that I had "normal brain mass" the neuro could easily say, "That's wrong!  You have brain mass loss."  

I guess on comparing your MRIs, you could see if the atrophy was increasing, but you don't need to compare MRIs to know that atrophy is present.  Unfortunately, brain atrophy occurs in both MS and ALS.

WAF

[Heather3418]

I guess one of the next questions to be asking you, is about your MRI's.  How long have you been getting MRI's done?  And what strength is the MRI?  There is a 1.5T (tesla-which is the strength of the magnet) and 3T and if you're really lucky a 7T that MRI's are done on.  Were your MRI's done using "MS Protocol?"  (Very important is you are looking for MS lesions, as MS Protocol, tells the radiologist to do varying "slices" and "angles" of the brain, done differently than standard MRI.  Did you have your MRI's done in a "closed" MRI or "Open?"

I do see that you have had your MRI (s?) done with and without contrast dye.  This is also important.

I'll give you a chance to answer these questions, if there is way for you to call someone to find out what your medical record says about MRI tests you have had done.  Then I will comment some more on your question.  Don't want to bombard you all at once.

I hope that we are able to give you some sound advice.  But please remember that we are not doctor's and cannot diagnose you, just based on our experiences with MS and Fibro.  I'm sure you already knew that.

Hang in there, dearheart.  We ARE here for you.

Heather

[Chrystalheart]

I really appreciate all of the input.  I am by nature and profession a data analyst and, considering how long I have gone without diagnosis, I figure it can't hurt to help with my own research if just from the perspective of being able to offer what symptoms match and don't to the neuro.  I have already provided her with a timeline/summary of the large symptoms.  And I recorded my last episode in boringly painful (argh, so much typing) detail on my computer so I wouldn't forget the details.  

Thanks for the explanations of how they determine brain atrophy.  That makes sense. I tend to doubt I have atrophy, because she said my MRI report was normal.  

I don't know what strength the MRI machine had, but I will find out.  I want to get the report and read it myself.  I do know that it was MS Protocol.  I am currently waiting for them to find my blood/labs.  It appears that they have been lost.  ?  I sincerely hope their diagnostics are better than their lab adminstration (grin).

I do entirely understand that you all are in the trenches and not doctors.  At this point I'm just brain storming.  The research gives me something to do that feels productive while I wait out the diagnostic process.  

I was a little down not to have an immediate diagnosis (as silly as that is).  I don't want to have MS, but in some ways it would have been easier just to know.  But I have bounced back to my normal perky self since doing all this research and realizing that there are still a lot of diagnostic possibilities.  I think the thing that I am most dreading is a "we can't find anything wrong with you diagnostically" type of thing.  But, surely they'll find something. At least they have already found some neurologic abnormalities.  Now I just need some helpful lab results.

Thanks again...

Jen

[Chrystalheart]

Oh, and Heather, this was my first brain MRI.  I have previously had one neck and one lumbar MRI to see if there was nerve imairment due to narrowing of the whatchamacallits.  What is the difference between a closed and an open MRI?  Mine was like a tunnel - open at the ends.  Feel free to bombard.

:-)

Jen

[Heather3418]

I am super surprised that you have had only one MRI after all these years of having obvious neuological difficulties.  It just shocks me that your doctor's have done a full brain.  

From what you said, you were in a "closed" MRI.  That's a good thing.  The quality of the films are FAR superior than an open MRI, which is one that is open on all sides, just a table at the bottom and a scanner from the top.

I truly believe that if was MS and since it's been 16 years since you started having trouble, that lesions of some kind would have showed up by now or some type of evidence of damage in the brain.  You may be one of the very few that never show lesions.  But in your case of increasing neurological problems, I am doubtful.

The next thing I need to ask Jen, is, have you had what are called relapses and/or remissions of your symptoms?  Have you had them hang around for days and weeks at a time, then have them disappear or diminish for weeks or months at a time?  This would be a typical pattern of what is called Relapsing/Remitting MS.  If these symptoms have been with you constantly and have barely diminished or even increased without a break, (then if you had MS) you would fall into another category of MS.  The more progressive kind.

There are some things that you speak about withthe Fibro that just do not sound like Fibro.  It IS possible to have more than one thing wrong in your body.  So keep that in mind.

I, too, would like to know what your MRI report says.  I would really work on getting that record.  Your car accident of so long ago, would make me believe that you suffered some type of permanent damage, but your brain MRI would have shown that.  Did your doctor say why they were doing an MRI of the brain using MS Protocol?  There has to be a reason that they are suspecting that.  They do not do MRI's using MS Protocol, unless something is telling them to look for MS.

If your current doctor is not able to give you some type of answers, it really is time to go see someone else.  You cannot continue to live like this, without some answers and seeing if there is some type of treatment.

I have been diagnosed with MS for over a decade and my very first MRI showed lesions in the brain and one lesion in the spine.  My neurological exam was able to show that my results were matching the areas of the brain and spinal cord, that were affected.  My Neuro at the time, said it was purely black and white and definitely a classic case of MS.  He said that I was easy to diagnose.  I did NOT have an LP, till many years later, so an LP was not used for diagnosis by this doctor.

Keep us updated on your research.  I really want to follow up with you and I am sure many of our members do too.  This is very puzzling and you are overwhelmed with neurological symptoms.  You should even be tested for ALS.  Remember that's only my opinion.

Hang in there dear.  We are here for you if you need us.

Heather

[Chrystalheart]

Yeah, actually, the neuro was pretty shocked some of my symptoms weren't more thoroughly evaluated. Nearly all of my problems started off with a bang and then over time got somewhat better.  The memory problem is a good example.  

In 1995, I started having severe memory impairment.  I had to keep written directions in my car to and from everywhere because sometimes when I was driving, things would suddenly look completely unfamiliar, including street signs.  I would have no idea how to get where I needed to go or even if I was going in the right direction.  I would forget work I had completed.  I remember once (I was a legal sec'y at the time) my boss asked me about a letter at 10:30.  I had no recollection of it, but found it in my file.  So, obviously within the 2.5 hours I had been at work I had transcribed it, put it through editing, copied, mailed, and filed it.. but I had no recollection of it at all.  I couldn't remember how old I was or how to calculate it.  This continued in fairly severe form for around a year then gradually improved.  I still have a lot of memory impairment, and it seems to be getting worse over the last year or so, but it hasn't been nearly as bad as that first year.  So, I do seem to have "attacks" which bring on new symptoms or which make existing symptoms worse for a period of time, but then they gradually improve - although they don't usually go entirely away.  

Around the same time I was also diagnosed with a sleep disorder.  I had started sleeping 13-15 hours per day, and had sometimes acute daytime sleepiness.  My eyes would start spasming closed and the muscles in my face would twitch.  I would get very slow speech and impaired cognitive function and exhaustion.  If I didn't sleep within an hour of an attack I would start vomiting.  I had a 2 day sleep study and they said I had hypersomnalence and probable narcolepsy and it would likely get worse over time, but could be treated with stimulants.  I was on ritalyn for around 3 years and it gradually improved.  I can't remember the last time I had a sleep attack and my sleep schedule is now more or less normal (although I do take a sleeping pill or the pain keeps me up/wakes me up).

My most recent attacks were three (2 fairly minor and one major) attacks over 6 weeks in July/August.  I had profound weakness.  My body felt very fatigued.  My thighs and upper arms burned when I would use them and the more I used them, the more tired they would get until they just wouldn't work and I'd be forced to rest.  Then it would improve a bit, until I used them again, and then they'd fail again.  I couldn't lift wet laundry out of the machine.  My hands and arms were too weak to grasp/pull.  I was resting my legs while sitting either against each other or against a wall, because even keeping them straight while sitting fatigued my muscles.  The last episode also came with the most severe tremors I've had to date.  My shoulder, especially, was jerking really hard.  I got frigidly cold - like it was 20 degrees.  The major tremors went away after 4 hours, and since then, although I feel .. trembly.. some times.. I don't have obviously apparent tremors.  My muscles have improved a lot, but they still burn and are still rather weak.  I'm walking straighter though, and not toe-ing stairs.  A lot of my symptoms just come and go thoughtout the day.. cold thighs, shivering, pain, things like that.  And sometimes I can go for long periods without a certain symptom.  Whatever this is clearly is affecting a very large number of body functions.  

When researching MS I thought I likely had secondary progressive MS.  I do have attacks and remissions, but I am also getting steadily worse over time.  But, as you said, you'd think after 14 years of fairly severe symptoms across multiple systems I would have scarring showing on an MRI.  So, I tend to think it's not MS, but some other neurological condition affecting the CNS.  

I doubt it was damage from the car accident, because the symptoms continue to progress over time and spread to other systems. I suspect that the stress on my body from the car accident jump started the condition or sped it up, because my symptoms got fairly severe in the 2-4 years just after the accident, but if it were just brain damage from the injury, I would think the symptoms would have manifested and then plateaued after whatever healing and scarring was going to occur happened.

Jen

[Chrystalheart]

Also, the auto accident wasn't that severe.  I mean, it hurt.  I broke 5 ribs.. I had a lot of muscle tearing.. but it's not like my skull was caved in or anything.  I was a pedestrian and was thrown into a sign that I hit straight down the right side of my body from my face to mid-thigh.  But, no broken bones or teeth in face.  I had swelling in my face for 4 months where a muscle was damaged, but that was the extent of the head trauma.

Jen

[Chrystalheart]

Bummed.

My bloodwork all came back normal too, except for my T4 was a little low.  All of the inflammation related tests came back well within normal limits.  However, today my eyes were very dry, which caused excessive tearing and irritation, and my right eye felt really weird.  Made my reading slower.  I was looking at my eyes in the light after work and realized one pupil was about a third bigger than the other.  The neurologist happened to call me shortly after that discovery to give me my test results and said to go to an ER at a hospital (not urgent care) with a good neuro dept.  So, I did.  But, the ER doctor who saw me just looked at my eyes, said that the pupils were responding normally to light and that it was a benign condition called Anasacoria.  He noted the eyes were watery, gave me cipro drops in case I have or get an eye infection, and sent me on my way.  Said I could follow up with an opthamologist.  A waste of time, except at least that's one more symptom seen by an actual physician.  I have had this weird sensation before, but this is the first time I looked at the eye, I guess.

So, still wafting along, collecting symptoms.. Argh.  Very frustrating.

Jen

[Chrystalheart]

The Ophtamologist thinks I have Adie's (a disorder where the sphincter muscle of the eye doesn't work properly) but is also having me screened for thyroid disease of the eye (orbital ultrasound) which checks for abnormally sized muscles in the eye.  She said this is actually affecting both eyes, but is just worse in the right one.  Looking at the big picture, I think it's just another abnormal muscle symptom.. but we'll see what the neuro thinks.  She also gave me a prescription for restasis to help with the dry eyes (and some drops and gel to use until the restasis kicks in). She tested them with strips and said they were severely dry.  

Jen

[Quixotic1]

Hi, you present a very complex case and deserve a thourough discussion.  You clearly have a neurological condition and it might be a progressive form of MS, but the rule out needs to be very thorough.  Until the rule out process is done no one can say this is MS.

One thing that I would encourage you and your neuro to do is at least two Western Blot analyses for Lyme disease.  Several things you said remind me of severe NeuroLyme with invasion of the CNS.  Lyme can cause all of what you have described and this late the usual screening test, the ELISA, is frequently negative.  The better test is a Western Blot and testing done on the CSF.

As far as distinct relapses (outside a progressive form) distinct relapses need to be separated by each other by a minimum of a month of improved or stable symptoms.

If you have hyperactive reflexes you have a spinal cord lesion and I missed a report of a spinal cord MRI.  This should be done on the highest resolution MRI possible as lesions in the cord can be hard to visualize - ask for a 3T machine.  About one third of people with MS have lesions visable only in the spine.

Since the rule out is coming back negative so far your doc will likely be ordering an LP (spinal tap).  This would definitely be the next step.

I disagree that this sounds much like ALS, which is purely motor and not sensory.  However, there are other more rare neurological entities that should be considered.   ALS is far less frequent and there are about 30,000 people with ALS in the US at any given time according to Wikipedia.  Yes, the number may actually be very different but still, it is far less than the 400,000 estimated for MS.

I, too, am very surprised that the MRI is negative.  After 14 or so years, I would expect something.  

Yes, brain atrophy is standardized so that a radiologist can state that there is or is not visible atrophy for a given age.

It sounds like all of your limbs are usually involved in an attack.  MS is typically not so symmetrical.

I hope you stay with us.  There is a lot of experience and info here.

Quix

[Chrystalheart]

Hi Quixotic!  I appreciate your thorough post.  I do often have asymmetrical pain, swelling, buckling joints, etc.  My left leg is the leg I get gait abnormalities in.  The profound weakness tends to affect all of my limbs.. but sometimes my legs more than arms or vice versus.  And unless I misunderstand and am misusing attack.. they also happen to different neuro groups.. for example.. my original onset of dramatic memory impairment.  My original onset of hypersomnia.  These symptoms took years to dissipate to their current levels.  And the original onsets were pretty severe.

I did have a lumbar spine MRI in February and a cervical spine MRI in September, in addition to the Brain MRI.  That just leaves thoracic spine.  I will mention the double western blot test to the Neuro and see what she thinks.  I really really really do not want a lumbar tap.  I am so scared of that.  I'm not a sissy generally, but my back is one of the most painful parts of my body and I have nearly a phobic response to the idea of an LP.  I'm not sure I could stay still.  But I am worried that may be necessary.

Wouldn't lyme disease show up on the esr, ana, etc looking for inflammatory response?  Mine were all well within normal levels.  I was also tested for lyme 16 years ago when they were ruling out other problems for the initial fibro diagnosis. But I could have gotten it later.  I did get bitten twice after that by ticks that were infected with erlichiosis and had to take the nasty antibiotics for a month.  Perhaps they carried lyme too.

I also tend to disagree with ALS, as it doesn't include cognitive symptoms.  

I had also thought about HTLV1 and 2.  I used to live in Taiwan which is temperate, if not tropical.  I was going to mention that to her as well.  

Thanks!!

Jen

[puppythreads]

Hi, I just had an LP and was pleasantly surprised that it was much better than the one I had 12 years ago.  Now they use X-Ray to guide the Dr. and the needle is much smaller.  I was very afraid because I didnt care too much for the last one I had.  But really, a small sting was all I felt when the local went in and then only some pressure when  the needle reached the spinal fluid.  The biggest problem was that when I felt the pressure, my own fear made me think it would get worse, so I relaxed and found out---it didnt get worse.  The only weird thing that happened was that my leg moved by itself, but the Dr. said that might happened.

Now I would willingly go through it again because I know what to expect.  I would encourage you to go for it if your Dr. recommends it.  I can pretty much assure you that the discomfort from the LP is nowhere near the pain you are suffering from your symptoms.  Just breathe easy and concentrate on making sure all your muscles are relaxed.

Best wishes to you and I hope you get some answers soon.

Karen

[Chrystalheart]

Thank you Karen.  That *is* reassuring.  I didn't realize you got a local anesthetic.  Did you have the headache pain afterwards?

Jen

[Chrystalheart]

I got my test results today and have read through them.

The MRIs showed absolutely nothing at all except mild degeneration in the C spine.  It was a T2 and FLAIR (not sure what FLAIR means).

The blood tests that I reviewed (not all of them were listed) were all completely negative (in the range of 0-4 where 0-16 is negative).

The exam showed this abnormalities:  

- hippus (spasmodic, rhythmic but irregular dilating and contracting pupillary movements between the sphincter and dilator muscles) (this is what is causing my pupil enlargement, which obviously got worse since my examination).

- Giveaway weakness in the extremities which was questionable due to pain

- She turns around in 3 steps.  There is no pivoting.

- 2+ reflexes throughout with bilateral equivocal toe response (It surprised me that she said the reflexes on the left were normal, because my leg was definitely jumping and I could feel muscles spasms several inches above the knee).  I'm not sure what the bilaterial equivocal toe response means.

She didnt mention the limping or my left foot angled in.  I don't recall being in pain that day.  Just limping with burning muscles when I'd use them.  And my arms and legs would shake when she tested their strength.

[Chrystalheart]

So, in researching some of these terms.. it looks like all she found that was not normal was the hippus and the equivocable toe thing.  The giveaway weakness is most commonly found to be psycho-somatic.  Awesome.

Jen

[Chrystalheart]

I'm trying not to be mad.. to be understanding.. to not jump to conclusions that she thinks I'm faking.

But I have to wonder if she even read the reports from my doctor and physical therapist?  She has the summary from my doctor about the auto accident, the lab work before and after hormone therapy showing elevated estrogen which then returned to normal with treatment, and the physical therapist's report of profound muscle weakness and tremors.  

Some of the things I don't have records for.  (Like the old sleep study and initial fibro diagnosis.)  I don't keep excessive amounts of paper - and certainly not for 16 years.  I would hope that the above and the new eye symptom would be enough to keep her looking with an open mind..

And, I may be over-reacting.  

Argh.

Jen

[Chrystalheart]

So, I'm ruling out HTLV 1 & 2 (and all the other numbers) because they are caused primarily by blood transfusion and sexual activity.  I was in Taiwan as a teen and neither of those apply.  

My current favorite is Lyme disease.  Nothing I've read rules it out.  I've had 3 tick bites that I know of (I used to live in Maryland which is quite overrun with the little buggers).  The first tick bite was on my back, which never exhibited any symptoms from the bite.  That was in 95 or so I think.  The last two tick bites I got (six weeks apart in the early 2000's) were "textbook" infections with bullseyes.  The first one was on my shoulder and exhibited symptoms within hours of my scraping the tick off (red, hot, bullseye, neck muscle pain) and the second one was on my leg and it got all swollen (about the diameter of a tennis ball, but not raised up very high, but red and hot) and itched for about 3 months.  I don't remember if it had a bullseye or not, but went to the Er both times and they said it was textbook both times.  I never had any follow up tests or thought to ask for one.  I only went to the ER because my Dad told me to (he hunts and so knows more about ticks than I do).

So, it's possible.

Jen

[puppythreads]

Hi Jen,

I did not have a headache after the LP.  The Dr. explained that the needle they use now is far less likely to cause problems.  In the unlikely event that you do get a headache, he said there is something called a bloodpatch that is extremely effective.  Fortunately I did not have to test this information.  

I will keep you in my prayers.  It is so hard to feel so awful and have no definitive answers.  If this Dr. does not help you, find another.  You can check out my journal if you want to see the stuff I have been thru to finally find a Dr. that was able to diagnose me.  

I have been turned down for disability three times now. Recently, upon the advice of my lawyer, I sent for my records regarding some psycho-neuro testing I had done 6 years ago, but that were ignored by the Neuro I saw when my insurance changed at work and I had to seek another Dr.  Come to find out, the recommendation was that I DID have MS with mild cognitive compromise, and that I should be on drugs to minimize relapses to prevent further cognitive deterioration.  

Not only did the new Neuro never review the information, he refused to listen to my current complaints and boldly declared that I did not have MS based on what he saw on my brain MRI.  Now, six years later with a GOOD Neuro, my brain is full of lesions and he wants to start me on meds.  Unfortunately, the damage that has been done over the last six years is now permanent.  

I share this with you to reassure you that you know your body better than any one else and you should push on until you get someone to help.  I sorely wish I had.  In fact, the Neuro who blew me off is going to get a firm letter from my lawyer.  I dont believe in law suits unless there is serious neglect, but I sure want him to think about it long and hard before he ever dismisses another patient.  

Dont ever accept stress or "in your head" from ANY Dr., especially if you have never been the kind to run to the Dr. for every little thing.  I certainly was not.  I walked on a broken foot for 3 days because I was convinced it was just sprained and would heal on it's own.  Boy was I wrong!!!

Hang in there sweetie, and dont hesitate to keep in touch with us.

Karen

[Chrystalheart]

Thank you.  I feel better about it today.  I really hate working with doctors.  The catch 22 with neuro problems is that they're hard to test.. which means for a lot of this stuff they have to go on their own subjective interpretations of the basic neuro tests and your subjective interpretations of your symptoms.  I wish all of the diagnostics were completely fact based, like lab tests.  Hook me up to a weight machine and electrically stimulate my muscle to see how it responds and how strong it is.  Take subjective out of the equation.  It's so easy for them to say, I don't see anything conclusive, ergo it's in your head.  I was reading an article yesterday about all the catch phrases they have for not offending patients when they say it's all in your head.  They don't seem to consider really that there's a lot about the body that is still not understood and to consider that the body malfunctions in a lot of ways.

It reminds me of fibromyalgia, actually.  There are still specialists who swear it doesn't exist, although they have done studies that have measured pain response to stimuli in fibro patients and healthy patients and found a marked difference.  

But, at least I have several things documented.  

Reading all of your guys' posts on here, it's kind of sad how much everyone had to go through to get a diagnosis of some sort.. how much uncertainty and derision and going long periods of time without answers or treatment.  There's got to be a better way.

I'm so glad you finally got an answer.

Thanks for your help.

Jen

[Chrystalheart]

Some other things I had completely forgotten about.. one is a positive conversion for TB when I came back from Taiwan.  I don't think that's related.  I took INH for a year and forgot about it.  The second is that I had Valley Fever.  I don't know when, but I have a scar consistent with Valley Fever on my lung that was found in the early 80's during a screening for pneumonia.  VF can in rare cases cause neuro problems, joint pain, etc.  I tend to discount anything that requires my condition to be a rare manifestation, but I suppose it doesn't hurt to mention it.

Jen

[Chrystalheart]

I talked to my big big big boss at work today.  He said not to worry about needing some extra flexibility for diagnostics and if I need a more flexible schedule or they can do anything else to help, to let him know.  That is so awesome.  What a totally nice person.  Turns out his wife has MS.  That is a huge relief.  I have been worried about my job and how this would affect it.  I want to stay employed until I reach retirement age.  Having some understanding and flexibility will help tremendously.  SO RELIEVED!

Jen

[Chrystalheart]

Update - So, today I had a sonogram of the eye.  The person who wielded the wand (I think she was a doctor, not sure), said that she is reporting that she considers my eye normal.  However, there was a room full of students that she talked to during the exam and she said something about me having big drusen in both eyes and that made it hard for her to find the nerve in one eye.  I looked up drusen this afternoon and it is deposits in the eye that are a sign of macular degeneration - usually occurring after age 55 or 60 in some people.  I'm 41, so it's a little early.  Hopefully it doesn't mean anything.  I guess I'll see what the opthamologist says.  Nerves and muscles were normal though.  Yay!

I also grilled my Dad after talking to my step-Mom.  I knew for a while that he had tremors in his right hand/arm and had been diagnosed with distal tremors.  I didn't know that he was having other problems.  He's not particularly talkative in general and usually when we do talk about its about computers or something.  Anyhoo.. he is having a lot of the same intermittant symptoms I am!  The occasional dragging foot, toeing stairs, restless leg type discomfort and twitching, muscles spasming and releasing when he uses them, hypersensitive skin, and his diabetes works exactly the same as mine.. doesn't go crazy high (160-240 give or take (normal is 80-120)), but does go dangerously low (he said down to 45).  

He went to a neurologist for a while, but stopped when the neuro wanted to do a muscle biopsy and his answer for why didn't sit well with my Dad (Dad felt like it was just to satisfy the doctor's curiousity.. that the doctor didn't have an answer about what he would do if he found anything).  Dad said the proproflol (sp?) he is taking helps a lot and he's going to let it get a lot worse before he goes back to a neuro.  

So, anyway, this could be a genetic something or other.  Hm.

[Heather3418]

It would so great if you put all these updates in a journal on your profile page.  I hate to see these updates get lost in a post, where you are adding new information, that might be missed by some of the Forum members.

Each time you add to your journal page, it will show up on the right hand side of our Forum page, so everyone will know there is more to read and there will probably be an update from you.

I think this a better way, so like I say, your updates are not "lost" in a post that may get pushed back to a second page or not get checked at all by members, because the "update" sits at the bottom of this post.

What do you think?  Does that sound good to you; so your updates are read by all?

Thanks dearheart,
Heather

[Chrystalheart]

Oh, ok.  I'm not real sure about how this place works.  Thanks for the suggestion.  :-D

Jen