Waiting on a diagnosis
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I have been given a diagnosis of CFS and FM. I got a severe virus in 2008 and never fully recovered. In recent years I started getting unusual symptoms like pins and needles all over and blurred vision. They give me a brain scan and said MS was ruled out. Since then I have what I can only describe as attacks, my left leg is unpredictable and feels numb, I get severe pain which stems from what feels like an inflamed spine, and I get blurred vision in my left eye, which comes and goes. These symptoms are always along side chronic fatigue. Then it all settles and I'm back to normal with bouts of milder fatigue. I'm so fed up with Doctors not knowing what's going on. I am waiting on another MRI for my thorasic back and I am contemplating a private MRI for my lumbar. Any advise welcome as I am at the end of my tether. I live in Ireland on public health which is not great.
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FaithInHim julia24924
Posted
Hi Julia
You definitely have my sympathy and prayers. I have MS so here is what I suggest.
You really need to see a Neurologist that deals with the symptoms you are having. MS is caused by lesions in the brain, and on the spinal cord. This causes damage to the central nervous system. You can have a clear MRI of the brain, and still have MS. You most likely need an MRI of the cervical area, (Neck) and the thorasic spine.
One other test that is done is a lumbar puncture. A needle is inserted into the spine to take cerebral fluid and serum to look for Oligoclonal bands which is 98% present in MS patients. I also suggest that you start a daily
journal and write down the date, and what the symptom is (Example: left leg numb) and how long it lasts
Does it go away or linger? Knowing the symptoms and how long they last can be important to help the Neurologist in the examination. Things tested in the exam are cognitive skills, reflexes, strength, eye movement,
coordination and balance. I also want to ask you, have you been tested for Lyme Disease (tick bite illness)
and tested for Lupus? There are some diseases that mimic MS, but in my opinion it sounds like it very well could be relapsing - remitting MS. In your daily journal, it is important to note how often your "attacks" come back and if there are any "New" symptoms you experience. So for now, while you wait for the MRI, try to get as much rest as you can. Eat foods that are good for you like fresh vegetables, chicken and fish. Avoid overuse of salt or sugar products. Also it would be beneficial to have a blood test done to check your levels of vitamin D, B-12,
check for anemia, platelet counts, red & white blood cells. Mention this to the neurologist. You need to see a Neurologist because "other doctors" don't have the knowledge or understanding of the disease. You will need to stay strong, and try to keep a positive outlook. I know that is difficult. Don't give up in your search for answers.
Any other questions you may have, I will try to answer for you if I can. Take Care & Best wishes to You ~ Faith
julia24924 FaithInHim
Posted
Dear havefaithinhim
Thank you for your warm and informative reply. I have been tested for Lupus and Lyme's, but I am not wholy convinced regarding the testing procedures. I would have been tested for Lyme's long after symptoms. Sorry to hear you have been on a similar journey , I hope you are managing well. I am doing my best to stay positive, and feel once I find out what's going on I might have a direction to go in regards managing this. My gut instinct is MS, and at least there are systems in place for that.
Thanks again. J