Have you been checked for Lyme disease? I am in process of lab work and then brain scan for lesions. Lyme disease mimics MS.
I went to a neurologist for symptom of "vibrating". He thought I had MS; but I had Multiple Myeloma. My "vibrating" was a paraneoplastic syndrome, an autoimmune response to my blood cancer. You can have MOGUS for years (a decade or more) before you actually have MM; but your blood will show it.
I too have been told I have MS but when tested I've got the brain lesions but not the O-Bands when the spinal tap is done. I have been to six different doctors and had six different intense testings done for MS. Last doctor finally said we will treat it as MS but no medication and tests yrly. so now I will have MRI's and Lumbar punctures done every year. I just don't know how to take it. Any ideas?
I have 2 lesions (white matter) hyperintensive foci on my frontal and periatal parts of brain, I am experiencing nausea, dizziness, dull left temple headache pretty constant and just a feeling of vertigo. Has anyone experienced this type of symptom?
Ask them to check you for Histamine intolerance (deficiency of the DAO and HMT enzymes which neutralize histamine).
Could check for GBS or NMOSD
I would find an LLMD and see if you can get properly tested for Lyme disease. I'm in the same boat, unfortunately. Daily migraines, dizziness, random twitching, hand tremors, brain fog, confusion, and so many other brain and nerve problems to count. I would start there. MS and Lyme have same symptoms but Lyme is hard to detect on an MRI if the Dr isn't looking at the specific things an LLMD would. Also, I've cut out gluten and sugar and it's helped a lot. I have good days and bad days, more bad than good anymore but it's worth a shot. Find an LLMD.
I would ask the neurologist about Myotonic Syndrome. This goes by other names. One is Myotonia Dystrophy.
I had the same things happening and had a negative spinal tap. My main symptom was losing the use of my legs and general feeling of not being well. Looking at ms symptoms we all thought I had it. The neurologist who did the spinal tap gave me the news that it wasn’t MS and said he didn’t know what was wrong with me and said come back in a few months if you’re not getting better. Oh, he did order a x-ray of my neck and I was furious that day because I had no answers and he didn’t seem to really care. I had to call for the results of the x-ray that said I had some degenerative changes and that was all. A few months later not feeling any better I found an MS specialist. He was great, he examined me neurologically and said something is very wrong but it is not MS. He sent me for an MRI of my neck and that is where the problem was. I was sent to a neurosurgeon and since then I have had three neck surgeries. The problem I had that was mimicking MS was degenerative disc disease in my cervical spine. I hope you find someone who will get to the bottom of your problem. Blessings
Have you had your cerebral spinal fluid measured? If so was it higher than 15?
I had exactly the same issue. Told me it was ms. It was b12 deficiency. It mimics ms. Get your b12 test. Its important to get b12 shoots asasp. Your symptoms can be reversed, if done fast.
I had the same symptoms in February, 2002. In May, 2002 after every test known to man, I was finally diagnosed with Meniere’s.
Look at the numerous ataxias. Some are genetic. Others are not.
For me, it was gluten ataxia. Went on a ketogenic diet incidentally and had nearly full remission of my MS like symptoms that sound a lot like yours. That helped the neuro figure mine out and I am on a strict gluten free diet now. My doctor and neuro thought it was MS before that, but I had a normal lumbar puncture and clean MRIs.
Gluten ataxia is estimated to be the root of 40% of those with unexplained intermittent ataxia symptoms.
Before you stop eating gluten, please take the necessary blood work. Get tested with antigliadin antibodies, endomysium and transglutaminase antibodies. If any of these are positive then you are sensitive to gluten. Again, the these tests need to be done whilst you are consuming gluten. Ask your neuro to do the blood work before going gluten free. You can get a clear diagnosis with these. It’s hard to start repoisoning yourself if gluten is the culprit after going gluten free.
If gluten is the problem, I believe the ketogenic diet helps heal the brain faster than straight gluten free. But that’s not proven.
I also take Vitamin C and E daily, as these help with certain ataxias.
Other MS mimic is Syogrens. My neuro also has tested for that in his workup.
Aspartame . Cut out artificial sweeteners . Lot of controversy about it but I cut it out years ago . I also think generally processed food contributes to a lot of modern day disorders but that’s my opinion . Research it . Good luck
There's a huge list of diseases that can mimic MS, I would see a specialist at a university. Possibly a neuromuscular specialist.
I went through similar issue my self; did my own research and became my own doctor. my neurological issues came from heavy metal toxicity which is everywhere: water, air pollution, food, meds, dental mercury fillings ..so I started taking chlorella and spirulina to detox my body from heavy metals, got my old dental mercury fillings removed and taking cannabis cbd oil which is medicinal only and does not give you high and is organic and cold pressed. also supplenting myself with daily minerals and eating 90% raw food, gave up meat, dairy, bread. I recovered and extra bonus from eating raw lost 40 lb. in 1.5 month.
He is with Blue Springs Neurology in Blue Springs, MO.--Dr. Avasarala. He does a lot of research with MS. That is why I picked him and travel to see him. He is great.
who is your doctor in missouri im in arkansas moved here two years ago from california and still no treatment just get passed from doctor to doctor. thanks
Hello. In response to you asking me to keep you informed, I got the results of my lumbar puncture this week. My results were abnormal indicative of MS. To confirm diagnosis, my doctor is having me retake the MRI of my brain and c-spine, an OCT test, and a SSEP test. He wants two negative tests to confirm diagnosis of MS. I am just glad I finally found a doctor that believes me and ran the tests for a diagnosis. I am not happy, of course, to get the diagnosis but at least now I can move on and start treatment before my symptoms get out of control. It is also a relief after having two other neurologists tell me I was "stressed out" or "it is all in my head". So, off to Missouri next week to have the other three tests run to confirm diagnosis.
Your most recent response gave me a chuckle. You are very considerate. Rest assured, your 1st reply does not sound at all deceptive. Please keep us informed!
Ohhh just read what I wrote and that sounds bad. I didn't mean I am deceiving people with the nickname, it's just that I miss Florida and I can't wait to get back and see the sunset. That is the reason for the nickname.
Thank you for the information. I am actually in Kansas. Sorry the nickname is deceiving. I appreciate the information and I will do some checking. Thanks again.
Thank you. I already had a MRI of my neck because in 2003 I had a two level dysectomy/fusion of the C5-6, C6-7. The neurosurgeon said my surgery is still doing fine and the neck is not causing these issues. I've also been tested for Rheumatoid Arthritis and Lupus. I'm told I am clear of these. Thank for the positive note. I appreciate it.