Welcome to the forum. I wish we had met under better circumstances. There are several wonderful and informative articles found under "Health Pages" (upper right-hand corner). The very bottom article should be of help with your question.
Hope you find the information you need.
Hi! I'm glad you like it here! I don't think we've spoken yet, so I'd like to welcome you. Welcome! I have seen your posts before, and have to say they are similar to mine in that you have symptoms, but no lesions. How frustrating!
Optic neuritis is one of those conditions that doesn't happen on its own usually. I'm sure you have read that it is often a precursor to MS. I know a man from my church who was diagnosed after one eoisode of ON. He did lose vision in his eye for about an hour, and BAM! diagnosis. Frustrating for the rest of us, but good for him and his worried wife and five children.
Your other symptoms seem to fit the MS mold (pliable as it is!), too. And you say your impulses have shown slowing. That is also an indication of some demyelinating disease. But, shame on you, you have no lesions!
After ten years, we would expect that a lesion or two would make an appearance, but in 5% of MS patients, they don't, or take their sweet old time. Has anyone here been diagnosed without ONE lesion? I don't think so. We have a very few who have not met the McDonald diagnostic Criteria and still gotten a diagnosis. We also have many more who DO have lesions and frustratingly NO diagnosis.
You really should read Quix's post, which I'll bump up for you, regarding MS and no MRI lesions. Just because they don't show up on MRI doesn't necessarily mean they aren't there. Something is causing your symptoms and ON. There is no such thing as MS without lesions. Sometimes the lesions can be shy, dagnabbit!
I should be embarrased to say I've seen seven neurologists. (Plus one who was on call for the other.) Your first doc sounds great. This one, not so much. Have you considered seeing someone else that would look at your case with new eyes? We can help you get a tight time line together to bring to someone new. Maybe by then one of those lesions will come out from hiding!
Thansk for comment. Have to take disablity papers to doc this week to fill out. I am going to try to find out what strenght magnets were used (3T ?) in MRI machine. My sis has MS and NO BRAIN LESIONS. She was finally diagnosed after 14 years of problems and in a wheelchair. Her lesions are on lower spine. My MRI was of brain and upper spine. Those tests cost me $12,000.00. Right now I have health insurance again as a "Domestic Partner" on my boyfriend's insurance as we have lived together in my home for the last 16 yrs. I have a new neuro. (haven't been there yet). Health insurance is temporary - but will have for the next 5 years (until his contract is up). Now is the time to rehash all of this as I am not working and can get my doc visits paid for all but $10. YOU PEOPLE HAVE BEEN A WONDERFUL SUPPORT GROUP!!!!!!!!!!!!!!!!!!!!!!!
Thank you for quick response!!!! I will check out those Health Pages and thanks again. Thank God for caring people like you!
Welcome to the MS Forum. We are glad that you are with us. Quix's article on MS and no lesions is very imformative. I would suppose that you have now read it.
As Momzilla says, 5% of people with definite MS have no lesions. Or let's put this another way, lesions that cannot be detected. I am convinced with people that are having as many symptoms as you are, that indicate MS, that you have lesions that just have not been seen yet.
It seems that some doctor's need to be reminded of that 5% that do not show lesions, but show clear signs of MS, in the absence of other causes. I know that this is very aggravating to you. I hope you don't feel though, that you will wind up in wheelchair like your sister. Wheelchairs are in fact, very rare in MS. Much more rare than the news community reports.
Keep up the fight for answers. Even if it means going to several doctor's to find the answers you seek. SOMEONE will listen and get you on some treatment.
In the meantime, we are here for you every step of the way. You will never walk alone, as long as we are here. That's a promise. Lean on us. We have soft shoulders and caring hearts.
Hang in there,
I believe we spoke last week or so. I've only had 2 neuro's (about to see 3rd) and haven't found one that believes in that 5% at all. I believe if/when I'm in a wheelchair, it will be when I'm older and hey we'll all be there someday. My main concern now is that my income has been cut off. Why doesn't my employer's opinion that I am too sick to work count for anything? They are asking a doc that refilled my Synthroid once a year how long I can sit or stand. I had family support but seemed to have lost that recently, and if I don't get answers soon I will have to give up for now. Even my boyfriend is acting like I'm wishing MS on myself. I just want help - medical so I can work or the disability. I get neither. Now is actually a scary time to finally get a dx. as I may have to return to work and be on new insurance - with a PreExist Cond - and I'm aware of that. I'm not wishing any illness on myself. Why don't these people understand and how did I lose their trust in me that I have a real health problem? You people came along just in time. For the first time in my life - I'm thinking of a professional counselor for depression.
I'm sorry this is causing a rift in your relationship and you feel like others assume you are desiring an MS diagnosis. SO been there, done that. Still living it, too. That is the hard thing to take, when others, who are not experiencing the unkind way your body is betraying you, think you could ever possibly WANT MS. (Did that make sense?)
I have just been given a diagnosis of "complex migraines" after spending a few days in the hospital with severe weakness. The hospital docs told me they feel I have a "degenerative demyelinating disease" which will show up in the testing at some point. My husband bought that. He finally faced the fact that thats' what this is. MS. No doubts.
THEN I went to my neurologist's for a follow-up to the hospital stay, and since my MRIs were normal, and I had a mild menstrual migraine the day of my episode, he is saying "Complex migraines." It just doesn't fit (unless Quix says it does!! So much doubt!!).
So, now my hubby is back on the denial trip. He pretty much refused to let me get a prescribed walker, which I really could have used. Now I'm fine. I know it's hard for him to accept. It still hurts, and holds me back from continuing my pursuit of diagnosis. I say this, not to take away what you're going through, but to show you I understand, and you'e not alone.
I should warn you that it will be difficult to get any kind of MS diagnosis with no lesions. Them's the facts. But you've only seen 2 neuros. That hardly counts on this forum! Get ye to the next one. Hopefully she/he will be someone who thinks outside the box a little.
We'll help you get a tight time line together, if you don't have one. And get that insurance in order....
Hang in there. Feel your pain!
I also wanted to say I think it's a GREAT idea to see a psychiatrist if you can. I know it's expensive.
Seeing a psychiatrist (one neuro referred me when he thought all my symptoms were "in my head") was one of the best things I did for my quest for diagnosis. I got the "all clear" from him, after we spoke, and he said I needed a better neuro work-up. He thought I probably have MS, and wants me to pursue it until I get answers.
Psychiatrists have much the same training as neuros. His evaluation validated me, not just to subsequent neuros, but for myself. It helped me immensely.
Think about seeing someone. Good luck!
Thank you. One prayer has been answered already - by finding you and this site. I've been living for ten years with whatever this is and agree with all you say. The psychology referral was because I quit sleeping. I've had chronic insomnia for several years and have already been in 2 sleep studies. Last one in 2004. Take TV out of bedroom and you'll sleep I was told. Yeah, if you say so! Last psych evaluation I had to have was in 2004. They said I'm fine, just frustrated with good reason. New doctor thinks I have degenerative back, sent to neurosurgeon, found foraminal stenosis and carpel tunnel but said mild no surgery - refer to neurologist. Gee, back at square one!
On Thursday I see doc for the referral. Only will see doc outside my old clinic that will treat me and not my MRI result. My sis has MS and insists I have, her lesions didn't show up for years and are only in low spine area. Let you know what new neuro says. Sorry lengthy!
By the way, Congrats on the new position and to SL too!
Foraminal stenosis as I understand it (had severe foraminal stenosis in my cervial spine and surgery to correct it) affects only the limbs, and not the CNS. Someone correct me if I'm wrong.
Find a good doctor. Bring a good timeline and all your test results.
I'm pulling for you.
Timeline? Like, hey back in 2000 I had optic neuritis? Don't my records indicate a timeline in themselves? Do you mean keep my own personal journal and copy it for my doctor??