2 1/2 years ago I started having occasional stabbing pain in right abdomen under rib that lasted for just a few seconds. At the time I weighed 140 lbs. within a month the pain become more frequent and more of a dull constant pain lasting for hours. Within two months I lost 15 lbs. 6 months after the pain began I had kidney surgery that was thought to be causing the pain, but did not fix it. A year later I had my appendix and scar tissue removed and still did not fix the pain. Two months after that while prepping for a Colonoscopy I had a severe migrane and I lost complete feeling in the entire right side of my body and I fell over while sitting, this lasted only a minute. Nearly two years into the problem and numerous doctors and tests later, an mri revealed two herniated thoracic discs which dr. believes is causing the abdominal pain, but shortly after come gait, periodic dizziness, tremmors, slurred speech, lack of concentration, memory problems. In Dec. 06 I got up from my desk at work to leave early from pain and the numerous symptoms above and took about three steps and I felt severe pain shoot down my legs and arms and then I collapsed tremmoring severely all over for about 8 mins. I remained conscious and able to asnwer yes or no questions the entire time. Ten days later I stopped working completely.
Past surgeries in addition to the ones above include hysterectomy-1995, gallbladder removal-1993.
severe fatigue, arms, legs, neck, back and abdominal pain. Constant all over body ache like when you have the flu. Difficulty walking especially up inclines, stairs or rough ground. Wake up in pain with hands, feet and face swollen and all joints aching. Bladder never feels like it's emptied, pulling pain while urinating and slight leakage afterward when walking. Occasional tremmors,dizziness, slurred speech, lack of concentration, memory, extremely sensitive to the heat and can trigger these symptoms and cold temps or drafts give me constant chills. Severe dry skin. Have gained a total of 50 lbs since initial weight loss.
Tremadol-50 mg 4x day for pain, Gabapentin 300mg 3x day being increased over next 9 weeks to 4- 300mg pills 3x day for arm and leg pain.
Tests and treatments:
every GI test known to man, MRI of brain, head, cervical, thoracic and lumbar, numerous bloodtests including sugar and thyroid, evok potential, tilt table, abdominal CT. Scheduled to have EMG in Sept.
Have had physical therapy and two epidural steriod injections.
Findings: 2 1/2 years later this is all they've found
mild discs herniations or slight bulges- C3,4,5, T8,9,12, L4,5
degenerative disc disease
Doctor is currently checking for: MS, lyme disease, R Arthritis, fibromalgia and CFS. He wants to do lumbar punture.
Please email me at ***@**** with suggestions or solutions.
Thank you for your help.
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Severe dry skin and weight gain of 50 lb. might be thyroid issues.
If this is subclinical, the blood tests may be "normal," even if you have symptoms.
Many many of your symptoms show the pattern common to Lyme Disease.
Tick borne infection can cause fibromyalgia, chronic fatigue, arthritis, thyroid problems, and symptoms identical to Multiple Sclerosis.
There is a big problem with getting tested for Lyme Disease.
The tests are not reliable, and will often miss known cases of Lyme.
Because of this, physicians are supposed to evaluate the patient's symptoms and history, and diagnose based on this, rather than on blood tests. This is called a clinical diagnosis.
Many doctors do the ELISA, a test that screens for antibodies to the Lyme bacteria, and if it is negative, they tell the patient he does not have Lyme.
In my case, repeated ELISA's were negative, and I never considered Lyme until someone else at a support group recognized the symptoms.
The Canadian Lyme Foundation has good information, and an excellent list of symptoms.
The symptoms vary so much because the Lyme bacteria infect the nerves, so the symptoms will depend on which nerves are affected.
There is a flash discussion group at LymeNet.org which is very helpful to newbies.
You can post a query on the medical forum, with your history and symptoms.
I hope you will pursue this further.
Wishing you the best,
Thank you for your information. I've been reading about the lyme test problems on here and I plan on asking my doctor about two other accurate tests I was told about having due to this problem. I will definately be tested again, but my feeling will be that it will be to rule this out. I live in the city, have since I was a teen, I rarely have even went outdoors for the past 6 years except to go to work, shopping, ect. I've never found a tick on me, but anything is possible, which is why the additional tests are needed. I had a spinal tap 16 years ago, done by an idiot, who let me sit up immediately afterward which led to a spinal headache for two weeks followed by daily shots for the pain, they didn't have the blood patches back then, or at least no hospital I went to mentioned it, so anyhow that left me gunshy of having another one, but the lumbar pucture sounds also like a necessary test at this point. The Gabapentin is main thing right now that helps me make it though the day. At this point I'll just be releived when I find out what's causing all my problems, so at least I can receive all the proper meds out there to help me function as best as possible. The list of different types of doctors I've seen is amazing and none of them had a clue. My current docs are great and determined to find out what's wrong, so with that I'm in great hands. It's definately helpful to lead them with other tests that can be done. My thyroid has been tested twice, but I believe that this could be one of the issues. I think that's part of my problem. I know I have a few things going on at once, that seems to be my history. 15 years ago I was diagnosed with kidney and gallstones at the same time. Currently I know I have rectocele and will not get the surgery, because of the pain I'm already in and my unwillingness to be in more, even if briefly. I have very large breasts and have been told they should be reduced to help with my back problems, but again, another touchy area that's not in pain and don't want it to be. I've had aprox. 10 surgeries in my life and I'm only 36 and the only one I would even consider at this point, my insurance does not cover yet, that is the thoracic minimally invasive discectomy, but it's still in the trial phase. That would at least help me with the abdominal pain and the squeezing feeling going around my chest, possibly even some of the walking problems. Anyhow, thank you again for your advice, I appreciate all the help I can get right now.
A lumbar puncture is not a good way to diagnose tick borne infection.
Although "your feeling" is that you can't have this because you don't remember a tick bite, there are many people who got Lyme by other means. Researchers have implicated fleas, mosquitoes, and biting flies.
Asking your doctor for a more accurate test may not help.
For example, the Western Blot IgG and IgM are better tests for Lyme, but unless they are done at specialty labs that report all the bands, they are not useful.
There are many strains of Lyme bacteria, but regular labs only test for one strain.
Please go to the flash discussion group I previously mentioned.
I would post the url for it, but the moderators don't like that.
I will be blunt: Unless you do a lot of reading and learn about tick borne infections, your chance of getting good medical care for this is slim to none.
Many of the Lyme literate M.D.'s treat tick borne infections with antibiotics, but there are a number of supplements that can help, and several alternative treatments that have put patients into remission.
When I first read your second comment I was amazed. I had wondered how it was possible that you didn't thoroughly read mine and had not only overlooked how I said lyme disease is possible and that I would pursue further research on the matter, but had gone so far as to tell me to not get a lumbar punture. I understand that you've experienced this first hand and are trying to help others and I am thankful for your help, but I'm very concerned that you would tell anyone to not have a spinal tap that could rule out autoimmune diseases. Limiting a persons ability to rule out or diagnose something so serious as this is not only wrong, but could be fatal. Many autoimmunes can only be detected by this procedure and also have numerous symptoms. It's a wonderful thing to share information that can help others, but never deter them from other avenues that may help them as well. Please post any future comments to me on this post only and thank you again for all your help Carol.
I'm sorry that you misunderstood me. I did not advise you not to get a lumbar puncture, I said that a lumbar puncture is not a reliable way to test for tick borne infection.
This statement is based on information from prominent Lyme physicians.
The Lyme bacteria invade the nerves, and there are relatively few of them in the cerebral spinal fluid. If the sample of CSF does not happen to have some of the bacteria, the lab report will come back as negative for Lyme.
Lyme researchers have likened this to fishing in a stream....you can dip a net into a stream with some fish in it, but just because you don't catch a fish in the net, doesn't prove that there aren't fish in the stream.
If you do get Western Blot IgG and IgM done, be sure to request a copy of the results, with all the "bands" listed.
The discussion group at LymeNet.org can direct you to several articles that explain the significance of the bands.
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