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MS or is it Fibromyalgia?
18 Replies
axxie - September 20

Dear Jezz, wow, you are having a fair bit of a problem and need to know what your problem is, I would ask for a second opinion, I would deffinately ask for a lumbar puncture if bands are present it's an indication that your positive that you have ms. I know no one wants to be diagnosed with ms, but the outcome of knowing outweigh's not knowing and not being helped with drug therapy.

It's imperative that you get a few test done, one is the lumbar puncture, the second would be a complete neuro work up and MRI of the brain, and then there's the evoke potential test. Everything is mild in testing won't hurt until you get the lumbar puncture, that has to be the worst, so keep that one at the very last, and ask for a certified radiologist that will insert dye in your back spine to give him a better picture of where he should do the lumbar puncture.

I know I had the test, and was very grateful that I had a radiologist that did the dye test, it was almost uncomfortable but I was deffinately not in pain.

At one point I was going through lots and the rheumy, doctor and neuro all thought I had MS, but thankfully it would seem I never had a second episode, so I have been diagnosed with Fibro. I know full well what you girls are going through.

Do go see a second neuro and don't be fool, but the testing that have already been done, a second neuro, will make you pass other tests.

With MS, you need to be treated the faster the better, you don't want to wait to find out, and find out that you could have gained better momentum with your drugs compounds that could have helped you and now cannot but you have surpassed the stage.

Please for all of you who think you are battling MS, go seek a second neuro exam and get them to do second tests. The faster you are confirm, the faster you will start treatments.

Good luck to you and lets us know how you do....

 

Silvermaran - September 21

You most likely suffer from Neuroborreliosis. Or better known as Lyme disease. The Elisa test is est. to be less than 50% accurate. And the WB test is only good if your body is making antibodies to show on the test. Many patients are finding after challenging that they have had Lyme the whole time. Fibro is a syndrome of unknown origin for which they have lots of drugs for sales profit. Like MS/ALS/Autism/Alzheimers etc. You should always continue to seek a cause and a cure. Lyme is a stealth organism that has recently been proven to be masked by our own DNA, and may not be detected unless some are killed first in the tests. Always get test results. Many now find that first tests showed some bands and told neg. because they did not meet the IDSA/CDC criteria for pos. Now we know any band should be suspicious. Many labs do not contain all the bands required for diagnosis and many contain just the required CDC/IDSA 3/5 bands they say are needed. This is false and should be changed. There are over 10 bands for Borrelia and some labs like Igenex use them all. Europe has just proposed adding 3 bands this week that they deem as significant. As medicine evolves to learn more everyday we seek treatment to cure and not just cover up the symptoms. You see if borrelia have shut off your immune system they may not see any bands unless challenged. Diagnostic hints could be something as simple as taking doxycycline for a month, going off for at least 10 days and test with a lab that includes all bands. They are also working on finding something that attaches to the OSP that can be seen in the test. This could be a huge breakthrough in diagnostics if it works for all. Published in jcp bmj this month-3 bands that should be included in WB. If it is found you do have Lyme the treatment can take over a grueling 2 years to achive remission, and some have to have continual treatment, but you can get out of the pain of Fibromyalgia. While not everything is Lyme the UK is reporting findings of yet another stealth organism yet to be named. But can be treated by a doctor who specialized in stealth organisms.

 

jezz - September 22

Hi thankyou for your kind remarks. I went to see my G]P yesterday who by the way is very good i have only been with the practice a couple of month, but he has done more for me than my other doc as in i would still be waiting for a bladder op. I have to go back today for blood and urine tests again and he is also refering me to a different neurologist as he isnt happy with what the first one said or has done as regarding testing. He thinks i have MS i am hoping for a complete diagnosis then i can get on with life at least i know what i am dealing with then. I hope every1 else is feeling better today and try to keep smiling i do. If you smile at one person they usually smile back and that can make some ones day!

 

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