Hi Y'all,
Has anyone in the ATN Group ever been diagnosed as having MS or possibly Pre-Ms. I have read that our symptoms are often the first sign of this devasting disease. One of the neurologists I saw was fairly sure I had it, the other was fairly sure I didn't. Anyone else?
I have MS symptoms and they have found ONE MS lesion, but they cannot legally put it on my chart or treat me for it or consider it as a cause of other symptoms (even though I have them) until I have MORE than one lesion. Their explanation? "That's why it's called MULTIPLE sclerosis." Sheesh! People with MS can get this pain medicine in lollipop form, that is prescribed as "suck on this for 1 minute or to minutes" or whatever to get the dosage you need. it's especially good for nerve pain, but I can't be considered for it until I have more than 1 MS lesion.
I also have lupus, and lupus can eat away at the myelin protection onf the nerves, causing MS symptoms and TN pain, so they sort of just say "it's lupus related", but can't legally do much for me with that diagnosis either. So I use a lot of natural and home remedies, but I am thankful my doc gives me the painkiller for TN. My mind is much clearer with the painkiller than with the anti-seizure meds that damaged my liver, so I had to go off of them.
Christina have you been told you have Pre-MS or one lesion or something?
Gunderson isn't a common name. I have another friend named that who lived in Norway until she was 22 then moved to the US.
Best wishes,
Sheila
Hi Sheila, Thanks for the response. My brain MRI showed multiple lessions, neurologist didn't tell me how many. I had a few other symptoms; parasthesia (bee stings all over, especially in face), dizziness, depression but my biggest complaint is the crushing face pain. My spinal tap came back negative for those specific proteins, so the doc said she couldn't be sure, but it looked like MS and advised me repeatedly to get a cooling jacket. The 2nd neurologist has MS as her specialty and said she was 95% sure I didn't have it. So I honestly have no idea what to think.
What meds help you with ATN? I am on the max dose Neurontin, not enough pain help.
Excellent topic of discussion, Christina. I was just responding to another discussion and it sounded like MS symptoms to me. From my research many MS patients have TN and many TN patients have MS. They have the same cause or origin - damage to the myelin sheath of the nerves. There is a connection. There might be information from MS research that we can look at.
Another issue I'd like to address for anyone who suspects they might have MS is testing. I have a friend who has MS and is very active in the Multiple Sclerosis Society. She told me that MRIs don't always show the cause or origin of MS. Sometimes it can be hiding and just won't be visible. MS diagnosis is one of ruling out other conditions/diseases and not one absolute positive test. Another test is a spinal tap to check the cerebral spinal fluid which will have some chemical element that they're looking for .
So she told me, "Don't ever let a doctor get away with telling you that you don't have MS based on an MRI alone. It can be hiding. Period."
I hope we get a lively discussion here.
Hi Christina. I have Relapsing Remitting Multiple Sclerosis and TN. I have been through the ordeal of trying to diagnose MS. I will repost what I sent to Gloria earlier in the MS and TN group.
A diagnosis of MS cannot be made solely on a contrast MRI. In my case there were several (at last count 11) MRI scans with contrast. There also is a Lumbar puncture.
Also called a spinal tap, this test requires that a small amount of cerebrospinal fluid (CSF) be taken from your spinal column via a needle that is inserted between your vertebrae. The doctor will send the fluid for evaluation, looking for the presence of oligoclonal bands (an increased number of certain antibodies) -- an indicator of increased immune activity in the spinal fluid. The neurologist told me that oligoclonal bands above 2 was positive for MS. Mine was 10 bands.
Three main types of evoked potential tests are used in the diagnosis of MS. Each of these tests requires that electrodes are attached to your scalp and connected to an electroencephalograph (EEG) to record brainwaves in response to different stimuli. The different tests are:
The doctor is looking for both the size of the response and the speed in which the brain receives the signal. Weaker or slow signals may indicate that demyelination has occurred and that MS is a possibility. However, this test is also not specific to MS; abnormalities could indicate another problem. A series of all three tests could take up to two hours to complete.
These were the three tests that were positive for my diagnosis of MS. I hope this helps you in some small way. Feel free to drop me a line at any time. Remember that faith and hope are good things, maybe the best things.
Gary
Thank you, Gary!!! That was extremely valuable.