Thank you for taking your time to read this, not am I only experiencing GI problems, but Neurological problems as well. I am asking if you would pass this on to Neurology, as I have tried numerous times to post, and have not been successful. I apologize for the lengthy letter, I have been suffering with these Sx for 8 mo, and I am desperate for answers! In late April 2005, one evening I started to have pain and tightness in my left trapezius muscle. I have never been a migraine person, or someone who has suffered from muscle spasms. Before all of this started, I was a healthy person who lives a healthy lifestyle. The night that the spasm started, it got progressively worse, by the next morning, I was unable to turn my head, and pain was shooting down my left arm into my pinky finger. That same morning I made an appointment with my primary physician who agreed that this was an extreme muscle spasm, and sent me home with pain medicine, a muscle relaxer, and a Rx for physical therapy. The following day I was in excruciating pain and saw a physical therapist. I was sitting in the waiting room to be seen, and when the physical therapist came to call me back, he told me that he could see my trapezius muscle sticking up through my shirt- the spasm was the worst that he had seen in all of his years of practice. That day the physical therapist could not treat me, and sent me home with directions for bed rest, as he could not do anything with me in the state that I was in. He told me that I should have been in a "ten care pile-up" due to the fact that the muscles were so severely spasmed up, and I had sustained no injury that could explain my condition. He was very concerned. I spent the next three days down, and I was in so much pain that my MD wrote for even stronger pain meds. Three days later, I awoke one morning in such a severe state, that I had pain shooting up the left side of my face and into my head. I went to the ER per my MD, as she felt that an X-ray and pain control was needed. The X-ray came back normal, and I was sent home after receiving Morphine and Valium. Over the next couple of weeks, I continued to see PT, and the spasms were improving, but I was still suffering spasms off and on. I lost my appetite, became nauseated all of the time, and started experiencing explosive diarrhea daily. Over the next 4-6 weeks I had to be seen in the ER twice for dehydration due to the diarrhea, it is still an occasional problem, also involving horrible gas. Finally, in June, I awoke one morning with the most excruciating headache I have ever had in my life. I began vomiting from the pain and could not stop. That morning my husband took me in to see my primary care physician, who gave me Phenergan and Demerol. I went home, fell asleep, and when I awoke, the headache was back in full-force. I was sent to the ER by my physician, and I was admitted for 8 days. During the eight days, I had a spinal tap, blood work, a CT of my head and abdomen, and an endoscopy. All of my tests were essentially normal, although I did develop Pneumonia secondary to what I believe was a fluid overload. I have no memory of the first three days in the hospital due to the severe pain that I was experiencing. On day four of the hospitalization, I was evaluated by a Neurologist, who diagnosed me with headaches secondary to subocippital paraspinal myositis with greater occipital neuralgia. Not only were the traps spasmed, but the occipital muscles were spasmed up as well, and were causing pressure on my cranial nerve. The Neurologist had an Anesthesiologist there within a half an hour. The Anesthesiologist did a nerve block that helped the headache. Upon discharge, I was referred to the Anesthesiologist for a series of Cortisone injections and another nerve block. I have had the Cortisone injections in both traps and in the suboccipital muscles, as well as another nerve block, and have failed these treatments. I have failed physical therapy, as it aggravates the muscles and causes even more pain. At my next appointment we will be doing Botox injections and a Ten's unit. I have seen an infectious disease doctor in our area, and she threw her hands up, and told me that if it were a virus, it would be nearly impossible to isolate it and treat me with an anti-viral drug. The Neurologist that I currently see has referred me to Stanford. When I got sick, three other nurses and one housekeeper (who all work night shift) experienced the exact same symptoms as me. Shortly before us all got sick, the hospital where we work started a huge renovation project very close to our dept. Are dept. also has intake/output vents, that on a few occasions were known to not be working. For the past eight months, we have all continued to have the same problems- intermittent spasms of the trapezius muscles, headaches, and even involvement of the muscles of the arms and legs. Recently, all of us have been out of work on different occasions due to
I am not a neurologist, and will defer the neurology components of your question to the neurologist.
Regarding your GI symptoms of nausea, gas pains and diarrhea, you can consider further evaluation. The upper endoscopy would make diseases like ulcers, inflammation of the upper digestive tract or anatomical obstruction less likely.
You can consider imaging studies (like an ultrasound) to evaluate the gallbladder. More specialized testing like a gastric emptying scan as well as esophageal motility studies can be considered to evaluate for gastroparesis and motility disorders respectively.
These options can be discussed with your personal physician. I will ask the administration to forward your question to the neurologist.
Followup with your personal physician is essential.
This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.
Sounds like it's environmental if everyone else is getting the same symptoms. Do you find that it lessens with more time away from the building? Here's an article on occipital neuralgia, that might explain the symptoms, treatments, etc. Good luck.
what do you do for a living ? it sounds like some type of toxic poisioning. I have the exact same symptoms with neuroligical problems muscle spasms and nerve damage to the GI tract in the stomach and been diagnosed with gastric paresis from a toxic substance.... a toxic posion can cause GI damage and your other symtpoms sound defintly environmental... remember theres lots of other things that wont show in a heavy metal toxic screen, like wierd gases and substances... sometimes they do damage quick and get out of the system with a short half life.. I dont have any ideas try to think of anything you and your fellow 5 people were exposed to
Thank you for your reply. What kind of toxin were you exposed to? I work in a hospital, and I don't even know where to begin to look for other toxins that may have been involved in this, such as gases... we are even having a hard time getting employee health involved, We have had two employee health nurses leave since the time that I was hospitalized in june. I wrote to the neurology department at the Clevelend clinic, and basically "begged" them to review my case, as myself and another nurse are willing to make the trip from Oregon to be seen there. Last week, I called a general surgeon in our area to get an appointment for a consultation, for a muscle biopsy of both trapezies muscles. The receptionist told me that she had never scheduled for this procedure before... that sure made me feel great! All of the testing that I have had done is testing that I have had to ask for, after researching on the net. Apparently, the Clevelend Clinic is the best of the best, and we could have everything done there. I need to see someone who is willing to figure out what is going on, instead of being bounced from Dr. to Dr, this is rediculous! Wish me luck at the Cleveland clinic!
macleodj...When i read your story of your problems and i too have the same thing going on with me iam a 35 year old male from oregon been in and out of the hospitals for over six months with now ansers seen docs from ohsu and seen docs from good sam and other legacy hospitals i have all kinds of test done!!!But still havnt got in to see a nero doc yet my pcp will not give me the referal..So iam too lost on what to do..They say mine is axiety and there is no way it is axiety i think the docs in Oregon are to quick to get you out and not lisen to whats going on even my pcp didnt even no what fabrys dease was when i ask to be tested for that...I had to have that blood sent all the way to new york for testing my gi doc is a pretty good one from northwest gastroenterlogy clinic in Portland iam hoping he will give me the referal to see a nero doc because he is the only one that has been helping me like you said it takes a team of docs and you cant get that here you have to run around from clinc to clinc i hope they find whats going on with you and you get into cleveland and get some good help because i know you will not find it in oregon put it this way my friend she was only 35 years old and had breast cancer and they said it was only stage one and only did one scan here in oregon so she said the heck with you and went to chicgo for help and come to find out it had spread to both brests and lyph nodes in the aim pits see is lucky even though see lost here breasts and lyphnodes in here arm pits but she is lucky to be alive thanks to hospital in chicago!!Are see wouldnt be here with use today see is now a year and 6 months cancer free !!!Good luck with everything and let me now how it goes maby i too might have to get into cleavland to find out whats realy going on as well...
Thank you all for your comments/suggestions, I found out today that the Cleveland CLinic Neuroscience center is willing to see me, and I have an appintment on January 7th. I saw a different PCP yesterday (my PCP had a baby two days ago), and I had an abnormal neuro. eval, I have 4+ reflexes in all four extremities, and when she felt my trapezius/neck/upper back, she said that this was very abnormal and that she was very concerned. She told me that she thinks that I probably have a neurological D/O that is causing the horrible spasms. I told her that I am deathly afraid that we are heading towards a diagnosis of MS, and she agreed that is something that we have to rule out. She personally phoned the MD at the Cleveland clinic this morning, and he bumped patients so that I could get in. He is scheduled out until March! There are so many things running around in my head, I am so scared. I am just afraid that we will not be able to prove that the hospital made us sick... this has literally ruined the past 8 mo. of my life, I am am struggling through a very intense nursing program.
I am so sorry that you are going through such pain and suffering. I am a nurse and I also suffer from similar symptoms as you and as yet I don't have a diagnosis either. Pain is so difficult to live with yet as parents we have to. I have to take morphine everyday and a muscle relaxant (Robaxin), also medicine for anxiety (Buspar). To complacate things I am also a diabetic and have heart issues. I just want to encourage you, keep searching, fight for what you need and who you need to see, ask a million questions and if you are a praying person, PRAY! Try and find the good things that happen during a day even if you only have no pain for 5 minutes, be thankful. Try and keep positive, a positive outlook is the best way to go. I will pray for you on Jan. 7 as you see the doctors in Cleveland.
I am so impressed with your tenacity to keep going and find answers...you have to. I couldn't believe it when I was reading your history because I have been enduring very similar symptoms with the trapezius muscle. I also had a physical therapist tell me that I was the second worse case he had ever seen. I am so frustrated right now I don't know what to do! I do not have the diarrhea....just the opposite....it's like the body doesn't know what to do! I am so tired of going to doctor's and they look at you and say "Well, I'm going to give you vicodin for the pain and cyclobenzeprine for the spasms.." They don't do anything. I went in yesterday and I told the PA that saw me that I wasn't there for pain meds....I had pain meds...they don't work...I need answers. Came home with a pamphlet on excercises, use ice packs, ibuprofen and get physical therapy. I've done it all before...it is pain beyond anything I have every experienced...anyway I wish you the very best and once again don't give up...I know I'm not going to! I am going to try to get in to a doctor at OHSU in the Rheumatolgy Dept. to see if they can help me. You are probably headed back east today - I think I read Jan 7. Good luck!
Dear mac, I hope that you're reading this. I was trying to find information on my own GI symptoms when I ran across something that I think can help you. They also
The symptoms you're suffering from sound like Fibromyalgia
The disease affects the soft tissues of the muscles and the joints, and digestive problems (like IBS etc;) are also a symptoms along with TMJ. You might ask your physician to check for this disease. I'm not sure how it's treated since I'm not a medical doctor, so I may not be correct, but this may help you find a better diagnosis. I hope this helps you out tremendously.
It sounds that you are having multiple systems (i.e. neuro and gastro/organ)that are being affected by your illness. Aside from the Neurologist, you may want to try a Rheumatologist. Especially, if you have any seemingly unrelated kidney, blood or skin disorders (i.e. a possible systemic disease). I had similar symptoms 8-10 years ago - all stomach and neurological - and they thought it might be MS or psychological. (I almost forgot about that trapezius muscle problem I had - muscles would twitch all over and then spasm in one spot for awhile, paralyzing that area with screwy reflexes). Eventually, more and more systems/areas in my body were affected and finally I had been diagnosed with neurological Lupus. Although I have a family history of the disease, the neurological version of Lupus is rare and the initial manifestation of the disease was rarer still. Not saying that it is the same in your case. You may want to check your family history (esp. mother's side). A lot of diseases have unusual manifestations and some take a while to "mature" into a diagnosable disease. Best wishes.
Pain - The pain of FMS has no boundaries. People describe the pain as deep muscular aching, throbbing, shooting, and stabbing. Intense burning may also be present. Quite often, the pain and stiffness are worse in the morning and you may hurt more in muscle groups that are used repetitively.
Fatigue - This symptom can be mild in some patients and yet incapacitating in others. The fatigue has been described as "brain fatigue" in which patients feel totally drained of energy. Many patients depict this situation by saying that they feel as though their arms and legs are tied to concrete blocks, and they have difficulty concentrating, e.g., brain fog.
Sleep disorder - Most FMS patients have an associated sleep disorder called the alpha-EEG anomaly. This condition was uncovered in a sleep lab with the aid of a machine which recorded the brain waves of patients during sleep. Researchers found that most FMS patients could fall asleep without much trouble, but their deep level (or stage 4) sleep was constantly interrupted by bursts of awake-like brain activity. Patients appeared to spend the night with one foot in sleep and the other one out of it.
Sleep lab tests may not be necessary to determine if you have disturbed sleep. If you wake up feeling as though you've just been run over by a Mack truck – what doctors refer to as unrefreshing sleep – it is reasonable for your physician to assume that you have a sleep disorder. Many FMS patients have been found to have other sleep disorders in addition to the alpha-EEG, such as sleep apnea, sleep myoclonus (nighttime jerking of the arms and legs), and restless legs syndrome. A newly discovered sleep disorder, upper-airway resistance syndrome, is also being evaluated for its association with FMS.
Irritable Bowel Syndrome - Constipation, diarrhea, frequent abdominal pain, abdominal gas, and nausea represent symptoms frequently found in roughly 40 to 70% of FMS patients.
Chronic headaches - Recurrent migraine or tension-type headaches are seen in about 70% of FMS patients and can pose a major problem in coping for this patient group.
Temporomandibular Joint Dysfunction Syndrome - This syndrome, sometimes referred to as TMJ or TMD, causes tremendous jaw-related face and head pain in one quarter of FMS patients. However, a 1997 published report indicated that close to 75% of FMS patients have a varying degree of jaw discomfort. Typically, the problems are related to the muscles and ligaments surrounding the jaw joint and not necessarily the joint itself.
Other common symptoms - Premenstrual syndrome and painful periods, chest pain, morning stiffness, cognitive or memory impairment, numbness and tingling sensations, muscle twitching, irritable bladder, the feeling of swollen extremities, skin sensitivities, dry eyes and mouth, dizziness, and impaired coordination can occur. Patients are often sensitive to odors, loud noises, bright lights, and sometimes even the medications that they are prescribed.
Aggravating factors - Changes in weather, cold or drafty environments, infections, allergies, hormonal fluctuations (premenstrual and menopausal states), stress, depression, anxiety and over-exertion may all contribute to symptom flare-ups.
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The cause of FMS remains elusive, but there are many triggering events thought to precipitate its onset. A few examples would be an infection (viral or bacterial), an automobile accident or the development of another disorder, such as rheumatoid arthritis, lupus, or hypothyroidism. These triggering events probably don't cause FMS, but rather, they may awaken an underlying physiological abnormality that is already present.
What could this abnormality be? Theories pertaining to alterations in pain-related chemical transmitters (particularly substance P, nerve growth factor, serotonin, and norepinephrine), immune system function (e.g. abnormally elevated levels of cytokines that form the communications link between your immunologic and neurologic systems), sleep physiology, and hormonal irregularities are under investigation. In addition, modern brain imaging techniques are being used to explore various aspects of brain function. The body's response to exercise, stress, and alterations in the operation of your autonomic nervous system (the one that operates in your peripheral tissues) are also being evaluated. Substance P and nerve growth factor are increased threefold and fourfold (respectively) in the spinal fluid of people with FMS, but researchers are working to figure out why these elevations exist. With regards to genetics, its role in FMS is also the focus of many investigations.
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