Member Comments are provided by individuals and reflect their personal opinions only. Under NO circumstances should you act on any advice or opinion posted in this forum. ALWAYS check with your personal physician before taking any action regarding your health! MedHelp International and our partners, sponsors and affiliates have no obligation to monitor any comments posted on this site, or the content and/or accuracy of such exchanges. MedHelp International does not endorse the views of any user.
Fibromyalgia / CFS Community
This patient support community is for discussions relating to fibromyalgia, Chronic Fatigue Syndrome (CFS), and pain management.
Fatigue/Dizziness/Cognitive Problems..CFS?
by Marc61, Jul 20, 2008 06:51PM
Can you help me? Any other avenues I should look at? Although their are a few brain lesions these do not appear to be new and other tests do not show MS. Could CFS cause these symtoms?
Most Disruption Symptoms
* All for ~ 10-12 months
1. Fatigue Severe overall and constant weak/malaise feeling.
2. Dizziness / Balance/ Gait /Disorientation
Constant dizziness/disorientation feeling exacerbated by movement.
Unsteady gait, side to side, with foot drag.
Clumsiness, dropping things.
3. Cognitive / Neurological / Sensory / Vision
- \Tracking with eyes difficult
- Reading: Right eye seems to jump.
- When watching a car drive in field of vision, for example, trouble tracking. Seems that eyes move past the car and then jump back or behind car (this causes a spinning/disorientation feeling).
“Zoned out/ Brain Fog / Thousand-yard stare” feeling.
Speech: Wrong words, slow word finding, trouble pronouncing words, long pauses to organize thoughts/words.
Memory: Slow memory recall.
Impaired concentration/attention/comprehension and forgetfulness.
Numb hands with tingling and twitching in arms and legs: This symptom was present for five months but no longer have this.
Other Frequent viral/bacteria infections (sinuses/ears).
New Sinitus/Rhinitus and allergy symptoms
Heart palpitations.
Numb hands with tingling and twitching in arms and legs: This symptom was present for five months but no longer have this.
Sept. 2007 near-fainting. Standing in office, sudden feeling of weakness/confusion/disorientation. I did not pass out… but do not remember the five minutes after that.
Emotional/Personality Changes: Agitation, increased auditory/visual sensory sensitivity.
Test/Evaluations Conducted
Newly developed alcohol intolerance in last year: cannot drink even a half a beer without feeling dizzy.
Abnormal White matter lesion occipital horn.
Romberg sway
Some abnormal cortisol readings (e.g. 3) but not consistently low.
Borderline low immunoglobulins.
One abnormal high calcium test. Repeat test normal
Hyperflexia
Neurological White matter lesion but normal CSF in Sept. 07, VEP normal. MRA normal.
Endocrine One abnormal Cortisol test (e.g. 3) but not consistently abnormal
Infectious Negative: HIV, neurosyphillus, Lyme, Epstein titer normal.
Allergy Moderate mold allergies
Auto-immune ANA factor normal
Medical History
Migraines Severe frequent migraines from infant until mid-twenties. Occasional milder migraines after.
Mono 1997: Mono with complications, requiring hospitalization for IV Prednisdone treatment.
Probable Parvo December 2005 probable Parvo in Brazil: Scaled rash across trunk of body for four days.
Travel
Brazil, Puerto Rico, Colombia, Mexico, Ireland
Most Disruption Symptoms
* All for ~ 10-12 months
1. Fatigue Severe overall and constant weak/malaise feeling.
2. Dizziness / Balance/ Gait /Disorientation
Constant dizziness/disorientation feeling exacerbated by movement.
Unsteady gait, side to side, with foot drag.
Clumsiness, dropping things.
3. Cognitive / Neurological / Sensory / Vision
- \Tracking with eyes difficult
- Reading: Right eye seems to jump.
- When watching a car drive in field of vision, for example, trouble tracking. Seems that eyes move past the car and then jump back or behind car (this causes a spinning/disorientation feeling).
“Zoned out/ Brain Fog / Thousand-yard stare” feeling.
Speech: Wrong words, slow word finding, trouble pronouncing words, long pauses to organize thoughts/words.
Memory: Slow memory recall.
Impaired concentration/attention/comprehension and forgetfulness.
Numb hands with tingling and twitching in arms and legs: This symptom was present for five months but no longer have this.
Other Frequent viral/bacteria infections (sinuses/ears).
New Sinitus/Rhinitus and allergy symptoms
Heart palpitations.
Numb hands with tingling and twitching in arms and legs: This symptom was present for five months but no longer have this.
Sept. 2007 near-fainting. Standing in office, sudden feeling of weakness/confusion/disorientation. I did not pass out… but do not remember the five minutes after that.
Emotional/Personality Changes: Agitation, increased auditory/visual sensory sensitivity.
Test/Evaluations Conducted
Newly developed alcohol intolerance in last year: cannot drink even a half a beer without feeling dizzy.
Abnormal White matter lesion occipital horn.
Romberg sway
Some abnormal cortisol readings (e.g. 3) but not consistently low.
Borderline low immunoglobulins.
One abnormal high calcium test. Repeat test normal
Hyperflexia
Neurological White matter lesion but normal CSF in Sept. 07, VEP normal. MRA normal.
Endocrine One abnormal Cortisol test (e.g. 3) but not consistently abnormal
Infectious Negative: HIV, neurosyphillus, Lyme, Epstein titer normal.
Allergy Moderate mold allergies
Auto-immune ANA factor normal
Medical History
Migraines Severe frequent migraines from infant until mid-twenties. Occasional milder migraines after.
Mono 1997: Mono with complications, requiring hospitalization for IV Prednisdone treatment.
Probable Parvo December 2005 probable Parvo in Brazil: Scaled rash across trunk of body for four days.
Travel
Brazil, Puerto Rico, Colombia, Mexico, Ireland
Post Comment
I tried to respond last night, but my information wouldn't post. (arrg)
All of your symptoms could be due to CFS, but of course it is important for your physicians to rule out many other possibilities before making that diagnosis. Most of the symptoms that you list... I relate to.
I'll start off by saying that I can tell you that many CFS patients have an alcohol and also gluten intolerance. I know my reaction to alcohol is that my heart will start skipping beats and/or racing and then of course... the next day I feel wiped out. And this would be after one drink (that is all I can drink anyway). I would definitely consider a gluten free diet for at least three weeks and seeing if that will also help your symptoms. Of course... be sure to do this with your physician's approval.
Which immunoglobulin tests have you had ? Has your physician(s) ruled out an immunodeficiency disorder?? Has your physician also ordered a vitamin B 12, ANCA and vitamin D level on you ? And which EBV test did your physician order ?
As far as the white lesion found on your MRI.... I can tell you that many CFS patients will have abnormal MRI's. Their cranial MRI will show small T2 weighted high intensity lesions in approximately 80% of cases.
Thank you very much for your help. I am going to try a diet over the next month to avoid all of the typical food allergens (gluten, dairy, etc).
ANCA
I have not had this one yet but will get this done. Thank you!
B12: Tested/Ok
Vitamin D: Not done yet. Is this a simple blood test?
EBV: I just had the standard antibody test, which came back okay. I am trying to get in to see an infectious disease expert as I understand there are better tests.. ??
Thank you!
Marc
Although you don't have a diagnosis yet and I hear that it can take sometimes years before an MS or CFS patient will have a positive lab test, I thought I would ask you if you are at least taking any supplements / medications to help manage your symptoms ?
The vitamin D is a simple blood test. Many people who have an "autoimmune" condition, fibromyalgia or CFS will have a low vitamin D result. Some people, including myself, now believe that a low vitamin D level is a symptom and not the cause of an illness. Of course having a low vitamin D level can lead to osteopenia or osteoporosis, so it is important to have your level checked.
The preferred EBV test is actually the EBV panel, which should include the EBV Capsid IgG and the EBV Capsid IgM.
There is one test that apparently all CFS patients are failing. I just recently read additional information on this. It is the "Holter Test". CFS patients are showing repetitively flat to inverted T waves alternating with normal T waves... this is an abnormal result.
Good luck with your appointment with the IM physician. I hope your physician knows about CFS because many physicians are diagnosing this condition, but not treating it. I just heard from one of my MedHelp buddies this morning who posts in the EBV forum. He said his IM physician who promised that she would try to solve his problem... called him and said there wasn't anything else that she could do for him. Co-Cure.org has a "Good Doctor List" online, where many CFS & fibro patients have listed their physician because they were satisfied with him/her. You may want to consider doing a google search and checking out their list.... they have physicians around the world listed and the list continues to grow.
Thank you very much. I will look at that website. For supplements, I am going in for a vitamin D test tomorrow along with more endocrine tests. I take Magnesium and a multi(the magnesium helps with the dizziness) It has been very frustrating since I wish I could find a doctor who would try to treat me. For most of the available treatments, there is almost no risk and the potential for a lot of benefit. Very discouraging. I will look at the web site that you reference.
Are there any labs you can go to and order a test yourself (EBV panel). It takes forever to get an appointment with the dr. and then there is the fight to get the test ordered.
Hi Marc,
There are no labs that you can order without a physician's approval.
I'm going to send you some links that I hope will be helpful. Trust me... I know how discouraged you are. I've been there myself and that is why I post here... I wouldn't wish it on anyone.
Check your inbox in a few.
Best,
PlateletGal