Early MS symptoms & negative tests

[jmbatgirl]

Eight years ago I began having what my doctors said were MS symptoms, but the MRI and spinal fluid were negative, so MS was ruled out.  Is it possible to have MS in the early stages before there is evidence on tests? I’ve had slowly progressive symptoms over the years (weakness, unsteadiness, and stiffness), and have recently developed some memory and visual problems.  I continue to see a neurologist, who simply treats symptoms. I’m wondering if it is worth pursuing another MRI.

Thank you.      

[callenius5]

I would definately get another MRI. I have had similar symptoms for 15 years. In fact, when I first started having them in highschool, I was diagnosed with MS. A year and a half later we went for a second opinion. I went through the whole slew of tests and they determined there wasn't enough evidence to prove I had MS. I have felt the symptoms on and off for 15 years. It was constantly in the back of my mind if i had ms or not.

2 months ago after having another bad "episode" I gathered my courage and decided to pursue it again. THankfully it came back negative for MS. Unfortunately, after tons of tests, everything comes back normal. I don't have any answers yet.

Please pursue it and I will be thinking of you. I pray that you find answers and please let us know what you find out.

Nancy T. - I have a hard time telling anyone my symptoms too! When you feel something for so long and everything "looks normal" you start to feel crazy. I don't want people to think I am a hypochondriac. Please know that you are not alone!

Blessings!

[Nancy T]

Good luck, jmbatgirl. I hope you get some answers, although I've learned that we should NEVER count on that, nor even really expect it. Go with the flow... and get your symptoms treated.

Which is easier said than done if you have to pay everything out of pocket. OUCH.

It's true, it's hard to convey to someone how your abilities have changed. My walking strength/stamina has declined considerably, but I could walk down the neurologist's hall like Miss America. (Or at least Mrs. America. :) No walking problems there!

I too had something come up very abnormal, the auditory evoked potentials (ABR), which were way off the charts. Besides MRI and a couple of inner-ear tests, that was all the testing I had, no spinal tap. But even the bad ABR was not given any real significance or explanation. Just "could have been a virus," the default explanation. OK...

Best of luck to you, and to you too Callenius! Stay strong.

Nancy T.

[Craig Brooker]

Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with your doctor.

Without being able to take history from you and to examine you, I cannot tell you what the cause of your problems is, and I cannot give you a diagnosis.

MS is a diagnosis that is based on symptoms, objective neurologic manifestations, and tests such as MRI, or other tests like Lumbar puncture and evoked potentials.

MS is usually manifest as flares of worsening symptoms (though far less commonly can be a slow progressive decline) that over a briefly get worse and then improve over several days.  These episodes have focal neurologic symptoms (such as numbness, weakness, specific visual symptoms, coordination problems, etc) affecting different areas of the central nervous system at different time points.  Episodes most often following an infection or stressful time.  These episodes of symptoms most often improve nearly completely or resolve and many not happen again for months or years So when patients have symptoms that may be suggesting MS, if they do not fit the criteria, a second evaluation after a second attack can give a higher yield. In the evaluation of patients suspected to have MS, the MRI plays a major role, as it can detect lesions (usually lesions in the white matter of the brain), and subsequent MRIs can demonstrate appearance of new lesions in different areas at different time points. If there is still no diagnosis after neurologic examination and repeated MRIs, and if there is high suspicion, lumbar puncture for specific markers is performed, and if there is still doubt, other tests such as evoked potentials can be performed.

When patients have objective neurologic findings, and there is doubt about the diagnosis, other rarer conditions come to mind, including vitamin deficiencies, toxic exposure, genetic conditions, autonomic disorders, and as I mentioned before, infectious and systemic illnesses. I cannot say that one of these could be causing your problems, as a detailed history is needed to consider diagnostic options.
Unfortunately I cannot give you a diagnosis based on your symptoms, and the conditions mentioned above should be only explored if there is a possibility that they may be involved. What guides the work up is the history and the exam.

[Nancy T]

Same here, symptoms for 9 years. Eight years ago neurologist all but told me MS (even after he knew I'd had a normal MRI a year previously, to rule out ear tumor). After another MRI, he said no, not MS. He did not follow me despite continuing symptoms, so I've just stuck with my Rx that helps and have not seen a neurologist nor had an MRI in five years. Being painted as a hypochondriac is so devastating that I don't tell doctors my symptoms anymore. You are lucky that a neurologist is following you, but if it's been 8 years since an MRI, you'd think he'd want to do another one if your symptoms are progressing!

[LymeLight]

Yes, it's worth it. Another MRI is a given after 8 years...mine showed major changes/abnormalities over a 3 year wait from beginning of symtoms.  Just asked your Neurologist or change neuro's if you have to and request that MRI's be done for comparison and to see what might show up now. Get checked for Lyme disease as well. ..........please.

[xdawnx]

please help me! im going out of my mind. For a year now i have felt dizzy, nausea, headakes, weakness in my arms, legs, face and head, Tingly/numb weird feelings in eyes, face, legs and arms. My eyes feel puffy(although dont look it), akey, drowsy and get sharp stabbing pains in the corners. My head feels strange, akey, dizzy and heavy.
For about 8 months i was getting chest pains and slight b reathing trouble which started about a week after having a tonsilectomy. 7 months later i was diagnosed with a left lung infection and treted for it. now 3 months latere the chest pains are getting worse again and my breathing shallow and fast again. Pains in my stomach, chest, ribs, left arm and shoulder especially are all other symptoms including strange bowel movements...constipation/dirreah all the time. ive seen various doctors who have treated me for all ear conditions and migraines and none of it works! i cant help feeling i need to see a neurologist and this could be seriouse? everything just keeps getting worse. Im 16, female and 7stone by the way and not pregant, aniemic or diabetic or asthmatic or anything. i cant stop thinking i have something seriouse and nobody is helping i feel crazy the way people look at me when i describe everything like im making it all up!? Please has anyone experienced any of this? =(

[jmbatgirl]

Thanks to everyone for the responses.  My neurologists have ordered some tests in the last few days, some completely out of the neurological field.  After MS was ruled out before, I did have a muscle biopsy 7 years ago that showed neurogenic changes, but the doctors don't seem to give that much weight and can't match it up to any specific neuromuscular disorder.  Since then, my records have been lost so it is just my word. Recently, one doctor even went so far as to say that maybe the pathologist saw something that wasn't there.  I completely understand the fear of being painted a hypochondriac. I am to the point where I am self conscious about telling anyone my symptoms.  The doctors tell me that my strength is not that bad objectively, but they don't know how much I used to be able to do before I started having all these problems. I often feel like they think I am making this stuff up. I don't have good insurance so I pay almost everything out of my own pocket.  I would much rather spend all this money on a nice vacation, rather than paying someone to clean my house and contributing to the doctors' income.  One of my more recent symptoms which started a year ago is this very painful spasm type pain in the rib area of my back.  When I was researching recently, I saw something called the "MS hug" which sounds exactly like this pain I've been having.  I have been to the doctor several times for this, and finally was told to get a back brace at the cost of $600!!  Before this pain started, I walked 2 miles a day, now I can't walk across the block. The brace helps some, but I still can't walk very far.  Anyway, thanks again for the responses, and hopefully I'll know something soon.