I finally had an MRI done on June 24th and just got the results - brain is normal - no signs of lesions but they did find "osteochondral bar deformity" on my neck. This may only result in some pins and needles but not the dizziness I suffer from. The neuro (who wasn't very helpful) said I probably had an ear infection (well then I must still have it!) Then he said it was probably anxiety. (Yeah sure!!! Okay!!) I am going for a second opinon as they cannot lump all my symptoms into one bag.
Has anyone had a normal MRI only to get diagnosed later? I have another MRI booked in August - should I do it?
Here is some history:
I am 34 yrs old (35 now!) and have yet to be diagnosed with MS. IMy first encounter with what I call a bag of mixed symptoms occured in 2001. I ended up staying home from work for over 2 weeks - to weak and dizzy to go anywhere. In 2004 the symptoms appeared in May and lasted another 2 weeks. Again, no work and to weak to do anything. Then in October 2004 the same thing! Many visits to the emergency room and I was dismissed with having "aniexty attacks"! (Believe me, I am not suffering from aniexty!)
I know I am not nuts but I have to question myself sometimes. Others just don't seem to understand how someone can feel so bad, so often.
Some of my symptoms include dizziness which seem to be more frequent around lunchtime (yes, I eat well), pins and needles in my feet and legs, very cold feet at times, nausea, and a tingly feeling throughout my body. Sometimes if I lay in one position for to long I get numb. I have never fallen down yet but walking has become a chore. I find myself short of breath at times and at times I have a general feeling of weakness throughout my body.
I have had numerous tests done and all seemed to be fine except for an evoked potential which showed nerve damage in my right leg (demyelination is what the tech said). My follow up with the neuro is in April and I am waiting for an MRI (takes up to one year - have many months to go).
Since Ocotober I have these bad feelings come and go. Dizziness, pins and needles in my feet and nausea seem to be the most frequent problems I am having right now.
Ruth, I am not speaking from experience, but yes, it is certainly possible to have a "normal" MRI and still end up having MS. Did they do the MRI with and without contrast? The thing about lesions is that they can come and go. Don't suppose you were "symptom-free" at the time that you had your MRI? A second opinion certainly seems in order. We'll pray you get to someone who listens to you.
Thanks. From what I have read I heard it is possible but the doctors seem to say "no the MRI would have picked any lesions up". ARGH! The MRI I had was without contrast. I have had lingering symptoms since Oct..dizziness, fatigue, odd pins and needles and have noticed that my sex drive has decreased! (My boyfriend even noticed - not surprising!) The symptoms that are lingering are nowhere near as bad as the times I end up in the hospital and then out of work for at least 2 weeks.
Anyhow...thanks for the response...I just wish there was an easy for things to get diagnosed. I can't see myself doing this day in and day out without at least an explanation to the feelings.
Ruth, where are you? the reason I ask is that the answers you've gotten seem, well, sort of ignorant. Researching on the web will tell an average schmoe (like myself) that: 1. Lesions can and do come and go in people with MS. 2. A brain MRI without contrast can easily miss lesions.
If you hadn't mentioned the demyelination suggested by your EP I would be encouraging you to hang in there, it can take a long, frustrating time to get a diagnosis. But I can't imagine a responsible 21st century neurologist being content with half an MRI in light of possible demyelination. Did they mention doing a spinal tap?
Honestly, Ruth, get that second opinion. MS is a demyelinating disease, for pete's sake.
You didn't happen to be seeing a neuro at a VA hospital by any chance? I had an experience with a VA hospital several years ago that made me believe the old doctor hadn't cracked a medical journal since he graduated from med school. Or read a newspaper. Around 1995 I asked for an HIV test (dentist had poked himself on my syringe). He said, "I don't think there is a test for that." Oh, my...
Ruth, I had my first round of MRI's back in March of 04 after having some weakness on my left side. 1st one: brain w/o contrast, 2nd one: spine with contrast. Both came out normal. My neurologist at the time said it was 90% certain that I didn't have MS or some other sort of demyelinating disease. 9 mos later my legs went numb and I had the same round of MRI's-- brain w/o contrast, spine w/contrast. Both showed significant lesions, and after ruling out all the other possibilities with blood tests and what not, they decided it was in fact MS. So yes, you can have a normal MRI even when having symptoms, and then have positive MRI's at a later date. I went thru the same sort of thing you did, my 1st neurologist kind of shunted me off after that and basically said "there's nothing wrong with you" Fortunately I found a great PCP who referred me to a great neurologist and I finally got some answers. Hang in there, definitely consider getting a 2nd opinion (dr.s don't know everything, trust me, I'm a nurse) Keep us posted.
I have a question. I have had three MRI's and they all came out normal.
The one of the Brain was done without contrast. I did however have a LP that showed and inflamation. The Neuro said I had 12 white blood cells found in the fluid. Does anyone know what signifigance this has? My symtoms started with what I thought was a bladder infection, then it went to my bladder not working at all. I ended up in the ER with three times the normal amount of fluid in my bladder, twice. Finally they gave me an indwelling cathather that I ended up having to wear for three weeks before I learned to self cath. Now my bladder is functional, I do have pain on and off and my bladder has a hard time sometimes. I had numbness from the waist down into my feet. My feet only had numb spots in different places. I had no controll of my bowels for a few weeks and the pain associate was terrible. I went to the itching stage, my tail bone itched something terrible, with no relief. I started the L'Hermitts sign soon after that. They put me on prednisone and I started to feel better two weeks after taking that, but before then I had the fatigue like you would not believe. Now I am loosing my hair, my eyes are doing funny things like light shows and halo's of light. The neuro says that he does not know what could cause my eyes to do this. At first he said that I had possible MS and then he said I had probable MS after the LP came back and now he is calling it possible MS again. He is out of town for a month and told me to go see an MS specialist if I needed anything while he was gone, I asked him why he could not just refer me to another Neuro close to my home and he said, he wanted me to see an MS specialist. He is confusing me! Well I am waiting on a referal, since he did not due one before he left. Now I am having vibrations randomly in my feet, in my pelvis, and tingling and numbness all over my body, but the latest thing is the itching in random spots all over. My fatigue is better the last week, I started taking the neurontin during the day and it has seem to help. Does anyone have other symptoms like these? I am a single mom with three kids and I work full time. I am worried about being able to do it all, all of the time and I usually am not good at asking others for help, but I guess I am going to have to learn.
Did he not ever do an MRI of the spine?? I am like you, bladder problems off and on. Even had several bladder infections and kidney. Just got over on this week. My first episode of problems other than my eyes was in October and it has been a wild ride ever since. They even checked for Devic's due to my having ON in both eyes. You should see an MS specialist. He is right about that. But take heart it took me MONTHS to get in there so even if he refers you, you are still in for quite a wait.
I'm going through a very similar thing, and am really frustrated!
Been having numbness, tingling, weakness in my left leg and arm for a couple years. Have dizzyness occasionally, and my brain is gone.
I've had bouts of bladder problems, and just recently fell down the stairs.
I've have 2 MRI's without contrast, and an LP, all which were normal. 2 Neuro's have told me I DO NOT have a neuroloigcal problem. I've been told to see a shrink I have an appt., and did see a pyschiatrist at the begining of all this too. It started during PG, and I did have post partum, so I think that is why they are certain it's pyschological.
Why do they say that there is no way it's MS with a normal MRI? The second neuro I saw is supposed to be the MS specialist here. I'm tired of not knowing, and being shunted all over the place.
I am in Ottawa, Canada. I am getting a second opinion and the date is set for Oct...another few months of waiting! The first neuro never mentioned a spinal tap...maybe the second one will or at least listen a little more than the first! So far the 2 doctors I have seen said that the MRI would have picked up lesions if there were any.
I can see how easily a person will begin to think they are going nuts!!! People have started to tell me that maybe it's all in my head... (WHATEVER!)
Hopefully the next neuro will be more helpful than the first.
Thanks for your response lilc! I will keep you posted!
I can understand your frustrations. One thing I have decided against is allowing other people to try and convince me that "it's all in my head" or that it's "physcosymatic" (however you spell that!) I know there is something wrong with me and what I feel daily is not normal! When they told me it was stress and aniexty that was the biggest joke because I am a very level person (unless you really tick me off!:-)
Anyhow....I am not sure how long this will continue but it's gets to be really tiring having to tell friends, kids, family, and a boyfriend that you can't do this or do that because you feel sick!
Hopefully we will have some form of an answer one day , real soon!
I am going through it right now too. (I was told it was anxiety and couldn't be ms because my symptoms come and go over the past few years. Which now I know is a totally ridiculous statement.) This past week things have really been bad for me. I am in another one of my "episodes" and am at my wits end. My Dr's leaving the practice and I can't get in with anyone else for a few weeks. I have fallen twice today and am only out of bed because I have kids to take care of. I am about willing to go to the ER but can't handle hearing it anxiety, ear infection, allergies, or any of the other excuses I have been given over the years now.
Oh, I did have an MRI back in Jan. I have possible "spot" but neurologist said she didn't know why. (She said it couldn't be ms because I don't have the same problems everyday - all day.)
still looking for answers...
sorry to vent so much but it does feel good to let off some steam.
They rely too much on these tests and don't listen to the patient and one of the problems is by the time you get in to the neuro your symptoms may of subsided a bit only to return a few days after your visit. Alll they do is tests now to diagnose, then either order meds or therapy. It is frustrating- I hope you get some answeres soon. I would make sure they have run all other tests to make sure its nothing else.