Mixed Reviews on Diagnosis

[Liz]

Hi.  I'm a 32 year-old female.  A little over two years ago I developed what seemed to be strange neurological symptoms.  It started with buring pain down my legs which gradually spread to my lower back and then from head to toe - less severe all over than in the legs and lower back.  I also have muscle soreness, neck pain, some fatigue, occasional muscle twitching, mild numbness/tingling/stinging all over and my eyesight seems a bit fuzzy at times.  Symptoms wax and wain, ranging from bothersome to barely noticeable, and they are worse when I am at rest.  I had a complete neurological work-up two years ago and just recently another MRI of brain and lumbar spine and an EMG.  Still all normal.  All blood tests have been normal, except for a recent high level of iron in the blood and low-normal level of magnesium.  My GP told me to stop taking multi-vitamins with iron and to take Slow-Mag (magnesium/calcium supplement) to correct for that.

All doctors I have seen, and I have seen them all, have suggested Fibromyalgia, but say that I don't fit completely into that category becuase I would be in much more pain.  A recent visit with a Rheumatologist found that I have the genetic marker for Spondyloarthritis.  It is now this physician's opinion that this is what's causing my symptoms.  My neurologist is not convinced.  He feels more strongly that it's Fibromyalgia.  My neurologist has perscribed Zoloft @ 50mg per day and my symptoms have lessened somewhat.

Any opinions on what this could be?  I know it's difficult to give an opinion without examining, but any thoughts or advice would be greatly appreciated.  It would be nice to finally be sure as to what this is, and what to do about it.  Thanks!

[CCF Neuro[P] MD,RPS]

thanks for the comments.

CCF Neuro MD

[darcie]

It seems like many of you have the same symptoms I have.  I have finally found what was the matter with me after 20 years of doctors.  My MRI's were not read properly.  Please go to my website below and see if my symptoms match yours.  I would type them all here but I am to sick so created a website.  Hope this helps some of you.
Darcie

http://hometown.aol.com/ezrashark/myhomepage/profile.html

[CCF Neuro[P] MD, RPS]

Dear Terrie:

I am not sure what you have.  But I would recommend that you have an EMG to see if there is a neuron or muscle cause of your fasciculations.

Sincerely,

CCF Neuro MD

[Terrie]

I would like to know if anyone has a web site that i can type in all the symptoms i have and come up with a possiblity of what i have.
I've been to doctor after doctor and waiting another appt in april.  
I've had MRI's from head to toe, Spinal Taps, blood tests, and all seem to come out normal.

It started about 3 years ago with bladder infections to the point of giving blood within an hour of onset.  Sensitivity to all but two things within an hour.  17 in one year.  No way of living life that way.  

I have muscle spasms so bad i can't move limbs, numbness in the whole buttocks area, burning pain that it feels like my muscles are being ripped off my bones.  Migraine headaches more then i can handle, legs don't move when i need them to,  My depth perception comes and goes,  Right arm is in constant pain when in use.  

The only way i can describe this is: it's like a little bug that eats up my muscles and when there's nothing left it moves onto another muscle.   Some good days and More bad days that leaves me bed ridden with pain or no movements.

I've been tested for MS and all the other things.

Current meds are:

urispas- for bladder spasms ( but get them rarely)
Microbid- to prevent infections
Zoloft- for depression
Claritin- allergies
Xanax - for sleeping because of pain.

I am a very active person and sometimes i can't move...does anyone have a site or know of something i can look up on the web.....

[CCF Neuro[P] MD, RPS]

Dear Liz:

I wouldn't take the comment of friends saying your thyroid is sticking out.  This would be very unlikely, given the position in the neck.  If you are worried, get a free T 4 level and a TSH level.  These two tests will tell your physician if your thyroid is not doing it's job.

CCF Neuro MD

[Liz]

Thanks again for your response.  People haven't said that the gland looked like it was sticking out, they just commented that it looks like a strange lump in my neck.  Just another avenue I thought might be worth looking into.  Would a regular CBC pick up anything that would point to checking out the Thyroid function?

I have many of the symptoms of hyperthyriod, and wondered about looking into it recently.

Thanks again.

[Liz]

Hi again.  Just had one more quick question and realized I left out one or two symptoms in the original post.  I also have frequent night sweats and an increased appetite, but don't gain weight.  And my thyriod gland seems to be "sticking out" a bit to the point where people have noticed the lump in my neck and have asked me what it was.  Could this possibly be hyperthyroidism?  How exactly is that checked for?  Is that something that is included in a CBC?

Thanks so much again!

[CCF Neuro[P] MD, RPS]

Dear Kelly:

It is good that your neurological tests have all been normal or negative.  The elavil is probably just to keep you from getting to anxious.  The side of effect of blurring vision should resolve as you get used to the medication.  Without examining you I'm not sure what you have, but in the face of normal testing it might be you have benign fasciculation or parasthesia syndrome.  A disorder of unknown etiology that causes not physical damage long term, but give patients fasciculations or feelings like their muscles are twitching.

CCF Neuro MD

[Kelly Blackburn]

I'm glad to find out I'm not the only one with these symptoms. I have had a troubling three months. I have had tingling sensations in arms and legs with ocasional numbness in toes. I also have burning and somewhat aching feeling in my left leg especially my thigh. My Neurologist gave me all the tests, including an MRI. So far everything is negative. He has put me on Amitriptyline. Since then I have been having blurred vision while driving at night and some double vision when I watch TV. I'm wondering if this antideppresent is only masking my symptoms and possibly making them worst. I'm a 26 years old and going to be married in a couple months. I'm scared these symptoms will never go away!

[To SM/From Maureen]

Would you like to e-mail me privately?  I like your idea of creating a registration or something along those lines.  ***@****

[sm]

I am amazed with the above reports and how similar they are to mine.  There seem to be some strange and undiagnosable ailments that have left many of us in the dark.  Sometimes it helps to have information exchanges among people who are undergoing the same thing and I suggest that this particular group of people make this attempt.  I have never heard reports so similar to mine ie. strange neuro symptoms that wax and wain, muscular soreness, twitching, burning,.......unfortunately I don't have the time to get into a detailed history but will at a later time.  Is there any way we can set up a distribution list so we don't continue this on-line?

Thanks and let me know your opinions, keep well and keep smilin', does a world of good!

SM

[CCF Neuro[P] MD, RPS]

thanks for all the comments.

CCF Neuro MD

[To Liz/From Maureen]

Hi Liz.

I have had similar symptoms to you for about 4 years!  Wow!  I have had the burning pain (although that came later; mine began with fasciculations), muscle soreness (that has resolved), neck pain (mine are spasms), fatigue (this has improved), numbness/tingling/stinging (yep, still get...), and visual disturbances.  On top of that I had mouth sores and trigeminal neuralgia which were not herpetic.  I have been through the ringer with the doctors.  Nothing definitive has been found.  I've had many many tests - everything except the LP.  MRI and SPECT scan normal.  Autoimmune workups.  Lyme.  Neuro-opthamology work-ups normal.  On and on.  Porphyria is being ruled in or out right now (no answer yet).  I DID feel sick preceeding my syndrome - prolonged sore throat, burning ear pain, and spleen/liver/groin pain (glands).  The doctor never ordered EBV titers at the time.  I think I may have had EBV as I do have positive IgG (demonstrates exposure) however most people do.  I just know that EBV can cause neurological problems in its aftermath.  I have tried numerous medications:  neurontin (marginal relief and made me fat!), dilantin (neutral), elavil (made fascics worse), verapamil (nothing), zoloft (neutral), tegretol (helped fascics, and burning tremendously - 200 or 400 mg. XR - am currently not taking to give liver a break), and now effexor 75 mg. XR.  I do not feel the way Betty does with regard to effexor, but I understand her point.  Effexor  has helped me  alot. It reduces the fascics, I haven't had any burning on it since I started, and best of all has helped me take my mind off this nightmare.  It  helps me to "float above" these troublesome symptoms.  It also helps with energy substantially.  I came up with it myself as it has been demonstrated to have a positive impact on neuropathic pain, plus is an anti-depressant.  My doctor said,"sure let's give it a go."  I am hoping this will work over the long term as monotherapy is definitely my goal.  All this medication stuff has been very difficult for me (a hard pill to swallow!) as I am historically very "natural" and even had three kids without so much as a tylenol.  But we have to make peace with these things.  It could be worse.  As the CCF neuro here says all the negative test results do provide a certain peice of mind.  I am being worked-up very intensely by a neuromuscular doctor in Phila. right now and I figure if nothing is found at least I am comfortable knowing about all the many yucky things I DON'T have.  I would love to hear the CCF neuro's opinion regarding the recent discovery of ALS and enteroviruses.  That is one thing that does make me nervous - what if I have a mild variant AT THIS TIME of an enterovirus which at some point my body will not keep fighting as effectively.  Liz, if you would like to chat with me my e-mail is ***@****  We will get better; keep the faith.  Maureen

[jean]

If anyone was on an antibiotic prior to onset of these problems may want to review this website www.geocities.com/quinolones/

[CCF Neuro[P] MD, RPS]

Dear Liz:

Sorry to hear about your symptoms.  The good news is that all your tests thus far are normal, and most of the really fearful diseases can be ruled out.  This doesn't give a diagnosis but at least some mind easing value.  Fibromyalgia is a clinical diagnosis, meaning that there is not particular test that is diagnostic of the disease.  There are criteria that we use but some times the disease will not fit completely (diseases haven't read the textbooks and thus can't be faulted).  I would tend to agree with your neurologist.  But if you have doubts, then I would suggest seeking a second opinion.

Sincerely,

CCF Neuro MD

[Liz]

Thanks Betty.  I'm not completely comfortable taking the antidepressant, but I trust my neurologist more than anyone right now.  I also like the fact that he doesn't push anything on me and gives me the option.  I just recently (past two months) started the Zoloft after he recommended it for a while beforehand.  I really am not aware of the long-term effects.

Did you have any type of illness or infection before this started for you?  Good luck and stay well.

[Liz]

Hi Bonz,

Yes, it's possible I've got both.  Lucky me!  It's just been bizarre.  I don't think anyone is really sure what this is.  I've wondered about hyperthyroidism and post viral syndrome too, but haven't pushed anyone to look into those yet.  I did have an infection immediately before this all started, but have always had neck stiffness and pain.

I have about 8 tender points, and the tenderness is really not that bad.  I've also been told you don't always have 11 of them.

It's just gotten to the point where you don't know who to believe.  And doctors conflicting opinions don't help.  But I'm dealing with it!

Hope all stays well with you!

[Betty Powell]

Is it not amazing how quickly they slap us on antidepressants for our symptoms...

I have the same burning pain, the same eye problems, the same twitching, the same numbness, tingles etc..it wax's and wanes...

I have had this for 4 years now..No Diagnosis...I have had every test in the book..been told Fibro and not fibro, Spondylosis and not spondylosis,Lupus and not lupus, porphyria and not porphyria, Ms and not Ms, Stress and not stress, anxiety and not anxiety, migrane variant and then not...I am sure you can see a pattern here.

You are not alone and you may never get an exact answer..Just avoid the antidepressants..Neurotin and Elavil help sometime...But be careful about the drugs like Paxil,Buspar,Zoloft,Serazone..They are quick fixes to a underlying problem and all they seem to do is hide the symptoms...
I have found that when I eat right, drink plenty fluids, take in healthy carbs, exercize, and most of all try to ignore the symptoms or not fret over them and worry as much they become more tolerable...
I think the problem is somewhere in my sympathetic nervous system..some fluke, Maybe RSD or a neuropathy....I do spill porphyrins in my urine, but the blood enzymes say i dont have this..I had a elevated sed rate and borderline ANA, but nothing more significant other than an occasional elevated H&H....

Without proper DX sometime antidepressants can actually do more harm than good in the long run..They did for me...
People with porphyria cannot take certian drugs it actually triggers the problem...I think When a doctor is uncertian of whats wrong the quickest answer is stress or anxiety...
Clevalnd Dr's are very good and I hope they can give you some ideas...I have tried to post many times but can never get on..Good Luck to you and Take care and YOU ARE NOT ALONE>>>Betty

[nancy]

Liz,
  I have been suffering with similar symptoms for the last six months.  The burning from head to toe is the most bothersome symptom and its hard to describe to people what it feels like isnt it?  Is your burning pain worse when you are at rest?  All my tests came back normal as well.  Its hard to suffer from ailments that no one seems able to diagnose!!!!!  Best of luck to you.

[Bonz]

Liz,

   It might well be fibromyalgia. The pain from fibromyalgia varies from almost none to quite a bit. It fluctuates. One day, I forget that I have it, another day, I'm reminded all too well.
Plus it varies person to person, some folks have a little pain and function quite well, others are bad off and pretty well incapacitated.
   Also - fatigue varies, from just somewhat tired, to profoundly exhausted. So don't rule it out based upon pain level. It may be something else, but then again, it may be "just" fibro.
   You could also have fibro AND arthritis. I have spondylosis of both the cervical spine, and the lumbar spine. It's a different pain from fibro, and adds tingling and numbness. Ain't life grand? :)
   Did you have at least 11 of the 18 tender points when you visited the rheumatologist?