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Neurology (Expert Forum)
Mixed Reviews on Diagnosis
This forum is for questions and support regarding neurology issues such as: Alzheimer's Disease, ALS, Autism, Brain Cancer, Cerebral Palsy, Chronic Pain, Epilepsy, Fibromyalgia, Headaches, MS, Neuralgia, Neuropathy, Parkinson's Disease, RSD, Sleep Disorders, Stroke, Traumatic Brain Injury
Mixed Reviews on Diagnosis
by Liz, Feb 09, 2000 12:00AM
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!
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!
Doctor's Answer
by CCF Neuro[P] MD, RPS, Feb 11, 2000 12:00AM
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
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
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.
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?
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!
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
Did you have any type of illness or infection before this started for you? Good luck and stay well.
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