Hello and nice to meet you all,
I have been lurking for some weeks and so I know and appreciate the expertise you possess. I'd like your reactions to my current situation but I will try to do the history real quick. I have been dealing with lower back and cervical pain issues for 3 years now. I had a fusion surgery for lower back that failed and a big surgery to fix that mess just this past June. Recovery has been rough and in the middle of this I am having neck pain and was Dx with a cervical hernaition at C5-6 to boot.
In August I had an epidural steroid injection in my neck to treat the herniation. I had a reaction to the steroid and within days I developed a severely irregular heartbeat. Rx'd a beta blocker for that and I soon developed vertigo. Lasted a short few days and gone. A month later the vertigo came back and was not typical vertigo but dreadful anyway. Lasted a week and faded. Dec 16th the vertigo-like ick came back and it was much worse and lasted until a few days ago. During this episode I was at my neeurosurgeon's office and he found I had Hoffman's Sign? He sent me to a neuro because he felt my symtpoms could not be due to the cervical herniation.
My symtom's have been: vertigo-like illness with extreme nausea and vomiting, gait disturbance, imbalance, funny head sensation that is like L'Hermitte's Sign but not quite, extreme weakness and stiffness in hips and legs, leg pain, roaming arm and hand pain, right hand is stiff, neck pain, recurrent bladder infections, tongue biting in sleep, fatigue. I was seen by a neuro (12/28). Neuro ordered an MRI (no contrast) and kept me home from work and Rx'd phenergan for the nausea and that was it. Oh, her neuro exam showed no problems though she didn't check the Hoffman's Reflex.
MRI showed no tumors (Phew!) and 5-10 nonspecific, small supratentorial white matter high T2 signal foci. The radiologist writes "I could not exclude a demyelinating process such as MS. However, these could simply represent changes of aging or be associated with other disease or even migraine headaches. I recommend clinical correlation. If there is a concern for MS then lab testing may be helpful".
My symtpoms have eased up. They are not gone but they are much better. My neuro thinks this MRI is not the MRI of a person with MS. 'MS goes way down on my list", she tells me. Upon being pressed, doc tells me these lesions are insignificant and perfectly typical even though I do not have any diseases that typically cause lesions like migraine headaches. Since I am getting better her plan is to monitor and hope this is some unknown illness that is passing. If I relapse? Her next step is to do Evoked Potentials. Since she let me go back to work I was thrilled and put MS away for good. I wrote some folks on the MS forum at Healthboards to thank them and tell them my good news and they suggested I might want to slow down. Some of the feedback I got was very critical of this medical care.
I don't know what to think? Are such lesions so insignificant? Can I afford to just wait and see? Is this neuro's plan flawed? I haven't had bloodwork to rule out Lyme. But I am a recovering back surgery patient. Until the vertigo and strobe like thing in my head started, I thought my bad back explained everything. Would you want a second opinion or an MRI with contrast? Thanks so much for reading this book! Take good care - suzyq

I see people are reading your post but not replying.....so I'll jump in, but I'll say from the outset I'm one of the least experienced. OTOH, I really identify with where you are! I think it's hard to tell another what to do, so it really is up to you and how you deal best with things. It sounds like you are a researcher, so you are probably more proactive than, for example, my sister or mother, who are shutting out the possibility that her 6 brain lesions mean anything despite her neurological problems. Me, I would not stop, personally, without as definite an answer as possible.

When I had similar symptoms, loss of balance, dizziness (I was prescribed some antidizzy medicine that did nada), and eye movement trouble four years ago, my neuro thought of MS. She did bloodwork and MRIs up the wazoo, to rule everything else out. Nothing showed up (not even lesions). I had two lumbar punctures, again nothing. Had a spell of bladder trouble, swallowing, and then later spell of problems with my eyes. I put myself through both those LPs because I *needed* to know; I wanted to be preventative if there was any sign it was MS. There never was, despite my unexplained neurological symptoms. Steroids actually helped me get better, although I ended up with permanent seizures, for which I DO take medication for (and they are under control). Even without the lesions or LP positive results, my neuro did not put the possibility out of the question.....she had me repeat MRIs yearly and said the moment I had a relapse of symptomes, she was going to do another LP. I appreciated her honesty, no matter how scary it was knowing she still wasn't sure I was "in the clear". Luckily, that day has not come. I've been symptom-free (except for seizures) for three years. There are times when I think it's "only" seizures, but then I remember that a three years symptom free does not mean it's gone if it's MS (and I have other autoimmune probs, so it's not like it would be out of the blue).

Then there's my sister. She's been having all sorts of neurological problems-and I just posted about them last week. She has six brain lesions; the surgery to correct the cervical herniation helped a lot, and her neuro is now saying there's no reason to worry about the brain lesions. Without having done any LP. Now, I KNOW the LP is no picnic (!!!), but if it were me (and it was, four years ago), I would want that extra confirmation. I would NOT want the neuro to be blowing it off. Plenty of people hang around at this site and are in "limboland". That's where I was initially, and suppose, in a very minor way, could still consider myself (I'm convinced there's nothing *active* going on, although I think of MS every single dang time I accidentally tip into a wall-going through my head to make sure it was an accident and not an actual neurological loss of balance....). But to say NO, without thoroughly testing for MS.......well, that's not what *I* would do. OTOH, my mom and sister feel okay with it. Actually, feel *better* doing it. And I can see their point, too. Instead of worrying about it....instead of it hanging over their heads......they say the lesions are due to migraine and the neurological problems are all due to the herniation....and go back to their lives. Fingers crossed that's all it was/is (although I find it disconcerting that migraines can cause such significant lesions, because a lesion is a lesion and a lesion in the wrong place, no matter the cause, is a baaaaaaad thing!).

I hope that makes sense. YOU are the one who has to wake up every day and do your thing. I don't have an answer for you, especially since I was questioning the exact same thing regarding my sister's situation. You need to find what works for you. It never hurts to get second and third opinions, either, if that is an easier middle ground solution.

Hugs and good luck!

Hi SuzyQ! I'm right there with you, which is why you'll probably see a little flurry of posts from me. I've been researching for the past 6 months trying to figure out what's wrong with me while guiding my Dr as to what tests need to be done. I finally was able to get him to order an MRI in Nov, and then I changed Dr.s to find someone who would actually listen to me. My new doc has me seeing a neurologist on Thurs. The last doc had me set up for March 3 and thought this was perfectly fine. He doesn't even realize that I left for another doc. My symptoms are classic MS and too many to list. I'm sooo tired of people asking what's wrong with me, since I look fine (except for the huge dark circles under my eyes). Anyhow, I don't see how lesions on the brain can be nothing. Maybe someone can enlighten me on this. Have you looked up supratentorial white matter? I found it helpful to take the specific words out of my MRI and google it and see what other docs or reseach said. You can learn a lot if you have some science knowledge. Is the neuro going to continue to keep an eye on this? Did she do the whole battery of balance, etc. tests?

Hi Footprints,
I have read your posts with interest -sorry about your sister and sounds like you have had good medical care, at least. I would not be surprised if the nurosurgeon who is doing sister's cervical care wouldn't say much about her MRI findings. These folks are real specialists - my surgeon had not a word to say upon finding my abnormal refelexes except that I needed to see a neurologist and quick. I find it odd that he/she is venturing to dismiss the findings. How wonderful that the surgery has been so helpful already. That's great.
I appreciate your taking the time to share with me. This is a nerve wracking process and no mistake. I am taking some time to think things over and I will be seeing my neuro next week. I will ask to have Lyme testing and also for the Evoked Potentials since I am still symtpomatic. I'm still feeling better and that is also wonderful - I needed a break. Then, I think I will wait until Feb 6th when I see my neurosurgeon again. I have enormous faith in that doctor. I will lay it all out and ask him what he thinks and whether he would want a second opinion. I also will ask him for a referral since he is Boston based and will have a much wider base to work from than my GP. Boy, there aren't a ton of MS Specialist out there, eh? I figure I have time to wait so I may ask for one and plan to sit out the several month wait.

Hello Carol - nice to meet you. You are sure of MS - not Lyme? I think Lyme is a long shot for me but.... my neighbor keeps reminding me of a friend that was misdiagnosed with MS and is in a real mess now. I do, indeed, look things up just on vocab words. Supratentorial means above the tentorial process of the brain - that's most of the brain, too. My neuro left things that I would see her on Jan 26th as a follow up. The next step was Evoked Potential Testing. But I am not sure what triggers that next step - just the fact that I am still having symtpoms or only if I have a full relapse or new symtpoms. I'll have to see. I liked this doc a lot. I have been told she is very good. I'd love to think that she is and that I am on the recovery side of some unknown illness. But I don't feel much like I am and it has been a long road. I'll have to see. I am heartily sick of docs and doc apts. It would take next to nothing to convince me to forget all about this unhappy episode. Nothing except a strange strobe-like electrical sensation everytime I turn my head and waves of nausea!
BTW- the neuro did a some neuurological testing on my first visit: watch my finger, walk a straight line, touch finger to nose, look up and so on. She did not check the Hoffma's Sign though and that really irks me! I wish you the best of luck and good for you for going looking for a new and more attentive doc. I hate to think i will might have to do the same but... Take good care- suzyq

I have a friend who keeps reminding me of another friend who was diagnosed with lyme also. There are a lot of the same symptoms. I have a running log of both of these. My doc gave me one test for lyme and ruled it out. This was the doc that I left. From what I have read, the lyme tests are not completely reliable and there are several different tests to be done. I just don't know. It really stinks, doesn't it? Everyone has a different opinion. Follow every avenue that you are able to and keep up your own research. No one knows you as well as yourself and doctors tend to be narrowminded in their thinking instead of wanting to look at a patients whole history and list of symptoms. Good luck!

Hey, SuzyQ. I was recently dx with MS. It began with the finding of lesions on my brain. The neuro first thought I had strokes instead of MS. But, he ran the Lumbar Puncrure, the Evoked Potential, and various other tests. Since I was also having a lot of trouble with the discs in my neck, he also ordered an MRI (with and without contrast). Lesions were also found there. To be honest with you, I have been chasing severe problems in my spine for years and years, and MS was not even much more than a thought for anybody but me. But...I seriously believe that I have had MS for all of those years, and it was not ever caught because the dye was not ever injected in MRI's.

Like Carol K said, I cannot understand how lesions on the brain can be incidental. Could somebody please fill me in on this????

Hello Sallyb-
How nice to meet you. Thanks for taking the time to chat. I'm sorry about your diagnosis but perhaps it is better to know, eh? I am concerned about the lack of contrast used in my MRI. I will be asking this neuro about it next week. I am so very grateful that the nausea has stopped but other symptoms are back up (strobe-like thing in my head) and I am unstable on my feet at times. I do hope the doc will agree with me that further testing is needed. Thanks for info. Take good care- suzyq

SuziQ, please be careful when taking phenergan, this drug has been known to cause halucinations and much more. I had several nurses tell me to make them take my husband off this, they didn't recomend it to anyone. It caused symptoms in him that made them think he had a stroke, they all stopped when he was taken off it.

One nurse told me of how she made a doctor take it himself, that doctor has never prescribed it again.

I'm a limbolander, also with those nonspacific lesions, 20+, but since I have a mostly negative LP (no banding, but high MBP and protein) I am ignored, even though I have many abnomal tests for the eyes, swallowing, hearing, gait disturbances and tremors. It's just so hard to find a doctor that will listen or be willing to get answers for a patient anymore.
Take care,
Pat

I'm wondering if the radiologist is actually a board certified neuroradiologist. If you don't know, you can go to Google and enter his name in parentheses, and after typing a comma write "neuroradiology" and perhaps the city in which he practices (ex: "John K. Smith M.D.", "neuroradiology","Tacoma"). It doesn't sound as though he is, to be honest. He should probably have recommended a repeat study with contrast (Gadolinium), given the lesions he did see and given your symptoms. An "over-read" by another, board certified neuroradiologist wouldn't be an unusual request. Make sure that you have your films if you switch neurologists, and ask for another opinion.

I just had an mri and started a thread similar to this...one bright lesion was found on my last mri and I am to see my neuro next week...he ordered it due to a migraine that is running on and on I wonder what he will say. I have cfs, fibro, or is maybe lyme or ms? I am debating on bringing hubs along to DEMAND complete testing as I don't want a brush off as it being migraine associated or what not....I have all kinds of sx....well enough to warrent further testing in my opionion. Not just like oh I have a headache...I mean I have body aches, weakness, new body aches, new weaknessess, etc....