Quixotic1, Can you please help me? You are very knowledgeable.
I had to have MRI-CAT scans on my head and brain. They found four lesions with a white mass also. I am seeing a neurologist with a few health issues. Severe headaches, had an ongoing headache for the last 3+ months with a lot of migraines thrown in. My eyes keep going out of focus, like a film is over them and double vision. The migraines are like electrical shocks going through one side of my head, they bring me to my knees (always on the left side-very rare on the right) they last on and off for about 20 minutes 3 to 5 times a day. Chronic fatigue with chronic recurring infections. Vertigo/dizziness. My speech, concentration and memory is proving to be very frustrating now, to say the least. Every muscle in my body spasm's 24/7 (though not all at the same time and is not painful, just very very annoying and embarrassing at times)and bone pain through out is horrific (feels like they are in a fice tool and being totally crushed) My appetite is up and down, same with weight gain and loss. Pins and needles in arms/legs they are worse when laying down and they are always falling asleep. Cold/Heat intolerance also. Hair loss, but not alopecia. Low grades fevers 8+x a day.
I was also told that I had chronic abscessed sinus disease and my ENT just done surgery on something that was deeper than the sinus's. (nothing wrong with sinus's) He told my husband after the procedure that it was a pocket,(left side) filled with a severe infection and it had mastisized around the infection (I do not have the biopsy results as yet-so I am guessing it can not be that bad of an infection) and that it was very hard and he had trouble getting in, to drain it. Had surgery 3 days ago.
Before the surgery, back in February, a dentist imploded an abscess into my jaw bone, my tongue turned green (though this started getting better after the surgery) and now the left side of my face and neck is in incredible pain, my cheek inside and out feels swollen and is very painful, the eye socket bone and eye is extremely painful and both upper and lower jaw feels like I have been hit with a bat, with ear pain to. Swollen lymph nodes.
The Dr put me on potent antibiotics (don
I know you were not asking for my advice, but I thought I would pitch in. I am a nursing student and remember that infections involved in the sinus regions of the head that go untreated for too long can begin to cause neurological problems and eventually blindness. If the infection was as bad as it sounds, you could have definitely suffered some nuerological damage. Ofcourse, I am not a doctor, and it is quite possible I have no idea what I am talking about. You might just want to mention the possibility to one of your docs and see what they say. I also know that intense facial pain that feels like electrical shock could be trigeminal neuralgia. My grandmother had it, but she passed of surgery complications when I was only 3 (so I don't remember anything about it). My mom says that is how she described her pain. She was so young when she passed that we really don't know what caused it. She could have very well had MS and just was not diagnosed. Someone should really be looking into what is causing the chronic infections. Have you seen a rheumatologist? Have they tested your ANA levels, sed rates, lupus titer, RH factor, etc. This is the most important to rule out certain autoimmune diseases.
I myself have been diagnosed with fibromyalgia for several years, and I know the frustration of that diagnosis. It is hard to believe that one disorder could cause so many strange symptoms. I myself have been having some new strange symptoms that go along with MS, and I will be getting tested soon. Quixotic has also been helping me on the MS forum. She seems very knowledgeable. I have also been experiencing the tingling and numbness. It does seem to get worse when I lay down, and happens every time I go to sleep. I have also been waking up vibrating so forcefully that my whole body is shaking. For a while I thought I was having a seizure, but I never lose consciousness. Anyway, I hope it helps to know there is someone else out there with the same weird symptoms. I am here if you need to talk.
I read your post and have been trying to make sense out of it. There seem to be at least three issues. The most concerning is the history of the surgeries (dental and ENT) involving "pockets of infections" The other word for these are abcesses. Certainly all of this could cause some of the headaches and facial symptoms,
My main worry is the "white mass" on your MRI of the brain. Could this represent a brain abcess? The ENT surgeon said he had to go deeper than the sinuses. ????? The sinuses are the deepest thing until the brain. They are separated from the brain by a sometimes thin layer of the skull. I am saying that what is deeper than the sinus is the brain. Where did the MRI fall in the timeline of these surgeries? How long ago was it? A brain absess can be life threatening and I think you might need to look ASAP for 2nd opinion. Also I may be way off base. I only have your wording to base any impression. And do remember I am not a neurologist.
Another issue is your description the attacks of headaches you get. These sound like classic Cluster Headaches. Try a search for cluster headaches and see if they fit what you are going through.
Then there are your systemic symptoms, fever, body tingling, body pain. The swollen lymph nodes speak more to infection. Do you know what your ESR or Sed Rate is? Is your white count elevated? Until they straighten out this abcess/infection issue it is going to be hard to understand the other stuff.
Is the Dx of Fibro new?
Yes migraines can cause clusters of white spots in the brain. This and the spots of MS can be confused for one another.
Could you post something of a general timeline about when the various things happened? The migraines, the Dx of fibro, the dental procedure, the MRI, the parasthesias (tingling) and pain, the ENT's surgery?
You need to get copies of all the medical records from all the doctors and seek a second opinion. And depending on when the MRI was, you may need a repeat MRI ASAP.
Please answer promptly and keep in mind that everything I say here can ONLY be a guess.
I started getting sick 2 years ago, with chronic sinus infections, pneumonia and partial collapsed lungs.
H-pylori, twisted colon with diverticulitis. Chronic migraines. Got Type 2 diabetes. Had to have an angioplasty at that same time.
Last summer, the bizarre symptoms started, my feet hurt badly and had swelling, which started going up my legs, they said I had diabetic neuropathy.
I gained nearly 75lbs in 5 weeks and had basket ball size bruises on my right groin and inner right thigh. Then throwing up and diarrhea for 4 months straight, with bleeding up and downstairs. Lost 65lbs in 4 weeks. September 2006, was admitted into hospital with mass infection, 5 days of iv-antibiotics and more tests than I can list. That is when the bone cramps and severe pain started, first just in legs, then pins and needles kicked in and got so severe I could not even walk. They sent me to the neurologist, who did nerve tests and that came back not so good and another MRI/CAT scan which showed the lesions and mass still, with chronic abscessed sinus's. He said it was because of headaches and high blood pressure (which I did not have)
October, re-admitted into hospital for COPD attack and found I had a mild heart attack, they say caused by "MASS
I really hope it is not trigeminal neuralgia for your sake cause I know how painful that can be, but I really want you to get a proper diagnosis. I have only been diagnosed with the fibro so far. I know these other symptoms are not related to my fibro, so I am still awaiting testing and diagnosis for that. I really think it is MS and would be quite surprised if they do not find something this go around. This is my third relapse of symptoms in the last four years. This will be my third neurologist during that time and my third MRI. I am going to be pushing for a lumbar puncture and EVP this time though. The symptoms have gotten so bad that it is not as easy to dismiss them this time.
It sounds like you definitely need to change doctors. Quixotic suggested looking on the MS Society website for a specialist in my area, but I am having trouble navigating the site. Ask around and see what you can find out about other neuro's and internists in your area. You need someone who is really going to listen to you and take you seriously. Because we are women, we are sometimes not taken as seriously because women tend to go to the doctor more and complain about symptoms more than men. You must push until you get the answer you need. I know that can be a frustrating process. This is one of the reasons I have decided to go into the healthcare industry.
I know what you are talking about with the grandkids. I have two small children, ages 2yrs. and 4yrs., and sometimes I feel like I am the most horrible mom in the world. I want to be active and fun with them, but a lot of times I just can't. I am also a perfectionist, but with the kids, my husband, and school, there is no time to sweat the small stuff. I have definitely had to learn to live with mediocre.
My night episodes are still bad. I had a CT scan of my chest and head today to see what is causes the vibrating and shaking sensations at night. I also wore a holter monitor the other day for 24 hours. I lucked out and had an episode while I was wearing it, so I am interested to see what turns up. I woke up that night several times vibrating and my heart racing. Then that morning I woke up suddenly and it felt like my heart was galloping out of my chest. The force was so strong that my body was rocking back and forth and the bed was shaking. If they don't find something on that monitor from that, I am going to check myself into the funny farm! I had never heard of people having these buzzing, vibrating, shaking episodes at night until now. I googled it and came up with all sorts of postings on this website. I also having the twitching, but I don't think it is quite as bad as yours. My biggest complaint is feeling drugged out and tingly numb all the time right now.
I will definitely keep you posted on my results, and please let me know how yours goes. I have enjoyed chatting with you and hope we can continue to lend support to each other. You will be in my thoughts and prayers.
Wow, I just read up on that "trigeminal neuralgia" and "Holy Cow" I think you hit right on it. That can be caused through dental surgery, so I am off to my dentist today. Thank you ever so much.
Have they diagnosed you yet? I really hate the night times, I get so freaked out, because I do not know if it is the bed or me shaking and the bed is solid wood too. I have also found, when the pain gets a little out of control, that is when I get a low grade fevers and sweat so bad, that it also causes uncontrolable shaking. The doctors keep saying it is "anaphylactic shock" because of the antibiotics. The infections are ridiculous, the doctors make me feel as if I am wasting there time or they have an urgent appointment to go to themselves. The spasms annoy me, especially when I am talking to someone, they think I am on the verge of a seizure, I get bad twitches too, all over the body. My neuro dr sits and reads his computer and does not even look at me when I am talking to him, like I am not even in the same room has him.
Can I ask how long you have been trying to get diagnosed?
Thank you for being here for me, I would love to stay in touch, I feel so alone with this and the feeling of "Going Home" is always very near to me right now.
It takes so much energy and work to be able to walk, sit down, eat and even play with my grandbabys. The pain is incredible, I would rather has sextuplets all in one go, than this. I am so scared for my eyesight, that I have to stay in darkness, because the light causes inmense pain and any noise is excruciating to my ears and head. I will stop whinning now though :-x
I am really sorry for your pain, I will keep you in my prayers Jenn. Thank you again. I appreciate you greatly.
Well the Doctor needs to get a little more schooling I think. I went and seen him today for the post op, he said the surgery went well, but had a very hard time trying to get to the Infected pocket, so he spliced my sinus's to release the infection from behind it and then found all the bone around the sinus and eye had metastasized with the infection, so it hardened them and that could be causing the whole left side to be doing what it is doing to me. I asked what was the infection? He said, wait for it......."I do not know"
So I asked him what caused it?.....His reply "Chronic sinus disease for many years" I asked, Is it going to go away?....His reply "I do not know" I asked, did you take it off the bone...His reply, I could not, it was too hard and I am not specialised in that area.....
WHAT....You got to be kidding me, Is all I could reply...
What now? Are they not supposed to do biopsy's on whatever they pull out of our bodies? I thought they did! I am not sure what I am going to do now?
He wants to "Vacum" the spliced sinus every week now for six weeks.
Why on earth leave them in there if it is that bad? I swear they love to see you suffer or trying to meet their monthly salary quota. Dear God....
I am so very sorry for what you are going through, I think they should pay us for self diagnosing, since they do not want to even explore the possibiltys of what we tell them. There are "Patient Doctors and Money Doctors" and I think I get the "Money ones" We really do know that there is something so terribly wrong with our bodies, but Doctors listening, is a life time achievement.
The flare ups for me, I get maybe 3 to 5 days with good days and then "Wham"
they last for at least 2 weeks at a time.
I have a wheelchair for those days and a cane for the somewhat good days.
How do you manage with little ones? Do you get help? I think I have been blessed, I have a nephew who actually adopted me as his Mom and is my caregiver, so what I can not do, he does and when I am so angry or in pain at this disease(s) he listens and copes with me, he is a true angel. But I feel bad, as he is 34 and needs a life, without having to take after his aunt. But he does seem happy and proud to do what he does for me..It is sweet..
Did you say that you lived in Utah also?
Have a great weekend Jen, hopefully not in bad health...
In my prayers and thoughts.
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