Not a doctor but have been thru this with my husband and still waiting. Has a lumbar puncture been performed(spinal tap) to show cells conducive of MS? Also, has a neuro done an avoke potential eye test on you-this can also dx. MS.
My husband has been ruled out as not having MS even though he exhibits all the MS symptoms and has more than 24 lesions on his brain. I just watned to tell you of some other very important tests they can do for MS. They should also do a genetic blood work-up on you. Good luck.
I've not had an LP. My neuro suggested it, but I declined. Blood work has been done. Evoked potentials were done after my first neuro visit 6 years ago. Thanks for your input, I appreciate it. Best of luck to your husband.
I know what you are going through.I also have the same symptoms and now am going through an episode of burning spots that come and go on my legs,back and shoulders.Constant burning in my feet and burning pain in my face that gets worse when I touch it.
And I also can't get dx'ed because my MRI's are clean.
I think this is terrible!We are missing out on valuable treatment,but what do we know...we are only the ones that are suffering through it.
I was diagnosed with MS 12 years ago. It is not unheard of to actually have MS and have NO lesions appear on MRI. BUT...in time, if you indeed DO have MS, the lesions will make themselves known. I still know that there are some people diagnosed with MS that have never had lesions.
Of course, all of us hope that you do NOT have MS. MS can be a very difficult disease to dx, since it can mimic so many other diseases or even a combinatiion of disease...Diabetes, Firbromyalgia, Chronic Fatigue Syndrome, Vitamin B-12 deficiencies, Peripheral Neuropathy and the list goes on.
I know what it's like to feel helpless while waiting for a diagnosis of SOMETHING. You begin to doubt yourself, you wonder if you are crazy, you worry that your doctor thinks you are a hypochondriac...I've been there. Despite 7 highlighted lesions in my brain and one in my spinal cord, I had a Neuro that would not diagnose MS because my evoked potentials came back normal. I was stuck in laa-laa land for many years. All I wanted was help. If I did indeed had MS, I wanted to begin treatment to slow it's progression. It wasn't that I WANTED to have MS. I consequently told the Neuro good-bye and went to a teaching hospital in Virginia.
I finally submitted to a spinal tap, which showed the typical banding seen in patients with inflammation of the Central Nervous System. Put all the information and symptoms together after many years of complaints and badda bing...I was finally diagnosed with MS and put on Avonex. Happy? Yes, in the sense that I finally had a diagnosis, which was a disease that could be treated; if only with expectations that were limited. But happy to have MS...NO!
It's so hard to be between the symptoms and the diagnosis. Sometimes it can be a long wait. Now I look at things differently than I did before...if I really didn't have MS, would it have been wise to treat me for a disease I only "thought" I had? But in today's medical world, I believe that Neurologists err on the side of caution. If it looks like a duck and acts like a duck, treat it as a duck. I believe that most doctor's feel that it is better to start you on treatment for MS and it's flair-ups, than to not treat you at all. As is usually the case, the lesions from MS will eventually show up.... All the symptoms finally fit. It's the waiting that can be the hardest thing about dealing with MS.
I hope that "Curious Neuro Patient" hears from one of the board doctors soon. She deserves an answer to her question. She has done what she should do...she has seen a doctor, in fact many times; now she looks to another avenue for some answers that may help.
Just as a matter of the symptoms during pregnancy...MS symptoms seem to abate and return about 6 months after delivery. It seems that hormones present
during pregnancy and the immune system changes, (that allows the foreign "being" to develop without the mother's body attacking the baby AS a foreign invader or infection) prevents or stops MS symptoms in it's tracks. If only for a little while. That is 'one' area the researchers are most interested in.
Thanks for your post. I wonder if you would be willing to post it on the patient to patient forum titled Multiple Sclerosis. I am not sure if you have ever posted there, but it is a very good forum with a mix of folks who have been dx with MS and those struggling with sx and searching for answers.
I think your post and input would be very helpful. You may also find quite a bit of knowledge there as well.
lesions=MS. How could someone have 24 lesions and not have MS? Have you seen a neuroimmunologist(MS specialist)? I would have the spinal tap. Also, lyme disease causes lesions and MS symptoms. A negative test does not mean someone doesn't have it.