Thanks for the comments.
CCF Neuro MD
Report on 20/20 ABC(about 3 weeks ago) about many people being diagnosed with chronic fatigue syndrome when actually they had Chiari(spelling) Syndrome. It is a form of cervical stenosis
where the brain stem or spinal chord gets choked by bone growth or vertebra out of place. Remember some trillion nerves travel through the brain stem into the brain. Many of these problems you people describe were described by people whom where cured with surgery to relieve pressure on stem or chord, also many times MRIs, X-rays, EMGs and other tests showed nothing wrong!!
I believe he was a nuerology surgeon at Johns Hopkins(I think it was the hospital name)? whom did the operations on many patients.
Hi Judy,
The bacteria that I think you are refering to is mycoplasma. I've read about it's link to Arthritis. You can find plenty of info on it if you go to infoseek and northernlight(search engines).
Good luck.
Gary
I HAVE HAD MANY OF THE SAME SYMPTOMS THAT YOU LISTED(HEADACHES,
TWITCHING ALL OVER,FATIGUE,STOMACH PROBLEMS)NEUROLOGIST DID
EXTENSIVE BLOOD WORK AND SPINAL TAP, BUT EVERYTHING CAME OUT'
NORMAL. HE IS SAYING POSSIBLE CFS. TIME TO GO BACK FOR CHECK
UP. THE TWITCHING IS ANNOYING BUT AFTER READING MANY SITES ON
ALS, I CAN PUT UP WITH IT. HAVE NOT BEEN GIVEN ANY MEDICINE
FOR THE TWITCHING, BUT MAGNESIUM,AND B12,B6, SEEM TO HELP
SOME WHAT. I HAVE HAD THE FATIGUE, STOMACH PROBLEMS FOR
SEVERAL YEARS , THE TWITCHING STARTED ALMOST 2 YEARS AGO.
TWO DIFFERENT LYME DISEASE TESTS WERE DONE . ONE CAME OUT
SLIGHTLY FUNNY, THE OTHER CAME OUT COMPLETELY NEGATIVE. THE
DOCTOR DISMISSED THE FIRST BECAUSE THE SECOND CAME OUT NEGATIVE.
WE HAVE TO HANG IN THERE AND HOPE THE FIND A NAME AND CURE.
Sorry about the double post, I was disconnected so I had to start over***
All of these symptoms sound pretty familiar. I've been sick for the past two years. For me it turned out to a fungal infection and a bacteria/virus. It had doctors thrown for a loop for quite a while. Now, I'm on the road to recovery. I'm back to about 85 - 90 perecent, depending on the day. If nothing else, it's another thing to eliminate.
I hope that you get well soon.
Gary
Hi, I think bacterial infection is possible, my doctor will be treating me with antibiotics for the stomach, which he thinks will help with my heart palpitations, heartburn, and possible the muscle twitching and fatigue. I'll keep you posted, my appointment is tomorrow. My question is: Can you have something like this for this long, my problems started last spring. Can bacteria get in your spine and give you all these neurological disorders? Thinking back my started with strange headaches, then after having Imetrex(shot), I noticed tingling on legs, and then twitching everywhere, then came the heart skipping, stomach problems but nothing I was worried about, a lot of gastrointestinal problems and heartburn, then came the fatigue, with consistent twitching and headaches, and last arthritic pain on legs. Has anyone heard about infectious Arthritis, I researched this subject on the computer, it can be picked up from soil and gardening (which I was doing alot of last spring) It starts in your stomach then it can cause heart abnormalities, arthitic changes and problems with the eyes, but It didn't say anything about twitching or fatigue, but I think they could all be connected. Good luck to you all.
Hi, I think bacterial infection is possible, my doctor is giving me antibiotics for the stomach (I have an appointment tomorrow) which he thinks will help with the heart palpitations and possibly the twitching. I'll keep you posted. My question is, can you something like this be in your system this long, I started having problems last Spring, and can bacteria in your spine give you all these neurological problems? My problems started with strange headaches, and after having Imetrex(shot) I noticed tingling on feet, hands and then came the twitching everywhere, then the heart PVCs, heartburn, then fatigue and now arthitis changes. Has anyone heard of Infectious Arthitis? I researched this subject on the internet, it stars by bacteria in your stomach, and can give you heart abnormalities, arthitis, and eye trouble, it can be picked up from the soil, I did alot of gardening last spring around the time my problems started. But it didn't say anything about twitching, headaches or fatigue, but I think it could all be connected. GOD BLESS.
Look up the term Neurasthenia, this is an old term not used in psychiatry anymore. It has been replaced by somatoform disorder. Neurasthenia describes a fatigued and exhausted condition. ***@****
Hi Lynn
I do think CFIDS is a possibility in my case. I have many of the symptoms listed. However, I do not have nor have I ever had the "brain fog" symptoms they seem to think is critical of a CFIDS dx. I did go to a CFIDS doctor and he said he didn't think I really fit the criteria because I had never been "bed-ridden" with it. I said, "Well I have/had three young kids at the time, no relatives nearby, a husband who is never home. How the hell could I have gone to bed short of adopting out my kids?" He got the point. Anyway, there is a good book on CFIDS called Chronic Fatigue Syndrome, A Treatment Guide written by 2 women sufferers (Verillo and Gellman, I think...). It lists benign fascics as a not uncommon symptom. In a way I'd be relieved if this turned out to be just that - as you said, you could stop the endless searching and use that energy to get better. Thanks for your comments, Lynn.
thanks for the comments.
CCF Neuro MD
My husband & I had all your symptoms & more for over 4 years. It was discovered that we had chronic carbon monoxide poisoning coming from our blocked chimney. We spent thousands of dollars on drs/er rooms/tests, etc. All negative...except we still continued to get worse & worse until a carboxyhemoglobin "CO blood test" that cost $45.00, showed I had ONLY 47% oxygen saturation in my blood!!!!! You should have 98-99% oxy saturation in your blood, and this test was taken after being away from the home more than 8 hrs!!! No one knows why or how we lived through this. We now take all kind of pills for arthritis, fibromylagia, fatigue, muscle & joint pain, etc., etc. Levels of CO that are lower than lethal (the level when your co alarm goes off) over a period of time will cause terrible pain & suffering. We know, it happened to us. Go to "Carbon Monoxide Headquarters" on the internet. Dr. David G. Penney is a CO Expert, pay particular attention to the Chronic sections. PLEASE
How about fibromylgia? I have been dx as having CFM for 12 years now...It is a complicated entity..and can be mixed with other disorders...Talk to a Rhumatologist and then a neuro..just to find out what is going one...good luck! Elizabeth
Judy and Maureen (and possibly Tracy)........ has anyone ever suggested to you that you may have Chronic Fatigue Immune Dysfunction Syndrome (CFIDS)? CFIDS is not just about being tired. There are many other symptoms that accompany the fatigue. (too many to mention here!) Check out the CFIDS Association of America's website at: http://www.cfids.org
I was diagnosed with CFIDS in 1989 and I experience all of the symtoms that you describe (and then some! CFS affects many systems in the body.) I was also diagnosed with temporal lobe epilepsy in 1998(discovered with an EEG.)
Good luck to all of you. I hope you find the answers that you are seeking. When I was finally diagnosed with CFIDS it was actually a relief. I was then able to adjust my life accordingly, instead of wasting precious energy searching for a cause for all of my mysterious symptoms.
thanks for the comments.
CCF Neuro MD
Judy, Wow - I can't believe it. Whatever mysterious ailment you have, I have also. I have the fatigue, the strange headaches, the burning (although not lately thank God), pain in my ears, palps, and constant widespread diffuse fasciculations. I do not have the arthritic pains you speak of. When will a name be put on this elusive "disease?" I came down with it 4 years ago. I am now 39. When it "hit" I was very run down, sleep deprived, and stressed. I have not worsened over the years, but I am still far from my old self. Has Lyme been checked with you? Please e-mail me! ***@****
I ALSO FEEL VERY TIRED, BUT I HAVE OTHER SYMPTOMS SUCH AS STRANGE HEADACHES, THAT MOVE AROUND AND FEEL LIKE BURNING ON SIDE OF HEAD AND TOP OF HEAD, PLUS TWITCHING ON ARMS, LEGS, AND BEHIND MY EARS, AND SOME HEART PALPITATIONS, AND AN OVERALL SICK FEELING, ALSO LATELY SOME ARTHRITIC PAINS ON MY SPINE, KNEES, FEET AND NECK WHICH I DIDN'T HAVE BEFORE, SYMPTOMS CHANGING EVERY DAY WITH CONSISTENT TWITCHING AND TIREDNESS. TESTS DONE SO FAR (LIKE AN MRI OF THE HEAD A YEAR AGO) (WHEN I ONLY HAD THE HEADACHES), AND BLOOD WORK SHOW NOTHING. PLEASE GIVE ME AN IDEA OF ANY POSSIBLE TREATMENTS OR TESTS I SHOULD HAVE DONE. THANK YOU
Tracy,
Why are the drs always so quick to give you a pill and send you on your way? I would think you would want to rule out a few things before taking a med. Maybe because I deal with so many hormonally challenged people in my profession that I tend to jump to this conclusion. I know many patients suffering from exhaustion like this as a result of pituitary or thyroid problems. Women are the most commonly affected patients with thyroid problems
Tracy what other symptoms do you have?
P
Dear Tracy:
Most sleep experts thing that routine is best. Try to go to bed about the same time and wake up at the same time. Stay away from caffeine several hours before bed. If thing persist even with a routine, then maybe a short trial of medications, melatonin or other agent, or a sleep study to evaluate the architecture of your sleep.
Sincerely,
CCF Neuro MD