Multiple Sclerosis Community

Scarlet,

Many patients have had ON present as their first symptom of MS--and have gone through a frustrating and long process of being diagnosed. And, no, it isn't all in your head.

The diagnostic process involves ruling out many other conditions that mimic MS symptoms. Often a diagnosis is given when it can't be anything else. That can take some time.

Have you had a cervical spine MRI as well as a brain MRI? Lesions could be present in your spinal cord and not in your brain. If you have had both MRIs and no lesions, that still does not rule out MS. It can mean that damage from inflammation has been repaired, or it can mean that there are tiny lesions not large enough to be captured by the MRI. It could be that the damage is in cortical gray matter, an area that MRIs cannot capture. An MRI never tells the whole story.

Do seek out an MS specialist for another opinion. A very good doctor will be able to diagnose MS from your clinical exam and history, but those docs are few and far between. Unfortunately, much emphasis is placed on MRI results when diagnosing MS. Like so many of us, if you do have MS, then you might have to wait quite a while for an answer.

The referrals you mentioned to see other specialists might actually benefit you by ruling out other possible conditions, thereby pushing the focus back to probable MS if these tests are negative. If you have the patience and the motivation, you could follow through with these and see what shakes out.

In the meantime, you should have your symptoms treated. There are meds for pain and spasticity, you don't need a diagnosis to be treated for these. Optic neuritis can be treated with Solumedrol, an IV steroid that speeds up the healing process by weeks. If your ON flares up again, call your doctor right away and ask about what treatments can be safe and effective.

Hope this helps. Good luck with your search, and do come back to update us on what you have found out.

Kim

Hi there: So many ppl. on this site are here to help you. I think your Physician should possibly check you for Fibromyalgia. This disease (hate that word) causes' pain in different joints of your body, it can also effect your vision. Something I myself have. If your Physican is willing to work with you, it is possible that you may have bursitis/tendinitis in your shoulder which is also painful. No doubt going to so many Eye Drs' you are getting so much feedback that its hard to take it all in. Each one no doubt giving you a different answer. As well ask him/her to see a Rheumatoid Arthritis Physician. With all the answers you are getting I can imagine you just spinning wondering what is going on. You keep mentioning your eye more so than anything else. Perhaps seeing a Eye Surgeon may help you with answers as well. I dont' know all of your med. history so its really hard to pinpoint. I myself am not a Physician but I would certainly see your Physician and be bold about it. Just say "look, I'm at wits end" tell me whats going on. He/she is saying do this, do that, or nothing at all, that is of no help to you. Dont' be offensive to your Physician but go in with a list of your symptoms, let the Receptionist know that you need time with him/her to discuss your issues'. It is hardly fair to you for him to just tell you "its' nothing" and leaving you not knowing. You will hear from others' on this site, I am certainly appreciative to all of those that I have heard from on this site. There should be no need to change Physicians' unless you absolutely feel that this one is just not doing what he/she should. I wish you much luck and I do hope that you get the answers' you are looking for. Pls. try not to get yourself worked up, I know its' hard not to especially with so much going on and zero knowledge of what is happening. I dont' know where you live but I do know in Ontario Physicians are hard to find. If your symptoms worsen I would go directly to your Hospital and tell them what is going on and if they can assist you with your ailments' and possibly a new Physician if one is available for you. Please try and think "positive" neagativity sometimes' makes the problems worse. Sending you a big hug and I do honestly hope you get the answers' you are looking for. Take care!! :0)

Hey Scarlet2269: I know how you feel..I am in the same boat you are in as well as alot of others. I have been trying to find anwers for a couple of years now. still, have no definite diagnosis.

I have all the symptoms of MS, although my neuro has never done a spinal tap, he is waiting around for me to have a positive active lesions on my MRI (I have old lesions but none active)..I don't know exactly why he feels like he has to have a positve MRI (maybe insurance because MS treatment drug is so expensive)..

Anyway, I am scheduled to see a immunologist/rheumatologists in June (that is the earliest I can get in) so maybe I will get some answers then. In the meantime, I am taking several meds for my symptoms whcih right now is mainly spasticity and vertigo along with tingling, etc.

Just a note, too to let you know it is much easier to read if you break your message into smaller paragraphs. You seem to lose your train of thought in a large paragraph. Thanks and if some of the stuff I am writing doesn't make sure please excuse me..as of lately I have been so tired I am not sure if I make sense or not sometimes.

Just to let you know you are not alone and it is NOT all in your head..Hang in there, don't give up..it is your health and you need to pursue it if you feel something is not right.

God Bless..



Judy

Hi all thank you everyone for giving me your feedback...it has all been very helpful..

i have had a spinal tap and the results are as i stated above,..he igG synthesis rate, CFS are two formulae for estimating the amount of igG produced in the central nervous system. Evidence of increased sythesis of IgG provides support for the diagnosis of multiple sclerosis...

it states that i do have evidence of MS but the doctor is still making me go to all the other drs also so confused..

At least i am not the only one who has had so many issues in regards to being diagnosed..thanks to you all i will keep you all updated next appt is late march..
thanks

holy cow! I thought the left shoulder pain was just sleeping on it wrong or something, but it hasn't gone away, even with stretches and hot/cold packs and pain meds don't do a dang thing, I simply thought it was a stubborn muscle strain. that happened just at the end of the back pain/numbness I had for 3 days in my upper back. now you've got me wondering.... and I completely get the lack of support from the doctors. the cognitave issues I have never seem to happen at the docs, they are always during my normal day. last time I had to take my husband with because I got tired of the docs saying it's nothing it's just in my head. It took my husband saying "she sometimes seems like she's losing her f-ing mind, and can't remember basic things half the time." for them to even remotely take me serious. Funny, as I'm typing this, I'm getting that blurred spot in my left eye, making this the third day in a row I'm going to loose vision for about half an hour. but it's all in my head...