What do I do next.....

[sunshine_elaine]

Saw neurologist #1 back in the mid-90s for severe headaches. He did an MRI and an evoked potential then he or his office convienently lost the test results. Never occured to me back then to contact the hospital where the tests were run to find out the results. No clue what those tests showed.

I've been putting up with dizziness for years. Just figured it wasn't a big deal so never mentioned it to my family doctor. Then I started getting clumsy and seemed to trip over my own feet all the time. In July, had a major fall out of the bathtub and hit my head on the sink. Probably should have gotten checked out but didn't. Then in November, I was carrying my 1 year old granddaughter, lost my footing and nearly fell. Thank goodness, I fell against a wall instead of hitting the floor and my granddaughter was OK. That's when I realized I should see a doctor to find out what was going on.

On to neurologist #2. At the first visit, she said my reflexes were off and I had ataxic (sp?) gait--turns out I can't walk heel toe on a straight line. I'd flunk a drunk test for sure!! I told her about the dizziness, falling, pins and needles in my legs and feet, tiredness and forgetting words when talking. So far, I've had an EMG, MRI (w/and w/o contrast), MRA, ultrasound of my carotroid (sp?) arteries and a CT scan. The MRI showed some blockages of blood vessels hence the MRA, ultrasound and CT scan. But those came back clear. Other than the blocked blood vessels, everything else looked OK. The last time I saw the neurologist and asked what this is...what's causing all my symptoms...she didn't have an answer.

I asked what I should do about the tripping and she said I should buy a cane. Needless to say, I left that visit crying. I don't know what to do anymore. Should I go back to her and hope she figures something out? Should I go to another neurologist? Is this just a part of ageing (I'm 58)? Or should I just forget the whole thing and buy a cane?? I have no clue what to do next.

[Carol]

Hi Elaine!

First off - no, it's not aging. I'm not that far off your age and I rarely trip or fall. Have you thought of seeing a physio therapist to figure out why you're tripping/falling? Weakness? Balance? Both? I've had vertigo several times but I have never fallen because of it. Not sure a cane would stop tripping - I think it's more for weakness.

I would try to control all of the variables that I can - eat healthy (low blood sugar can make you weak and dizzy), keep hydrated (dehydration can make you weak and dizzy), exercise to your abilities (use it or lose it has some truth), make sure you get enough sleep (sleep deprivation can cause all sorts of problems), etc. Try to reduce stress as well - easier said than done, but easier once you put your mind to it. My flares are absolutely tied to times that I let myself get overwhelmed.

Sometimes there can be more than one factor in what ails you. Your symptoms sound like MS, but could be from many other issues as well.

I would definitely be followed by a doctor until you figure out what's wrong, but I would do everything in my power to get/stay as healthy as I can in the meantime.

Take care,

C

[Redwings]

Should I go to another neurologist?

Yes. If a doctor can't find a cause, you should get another opinion, and a third and fourth, if need be. "Get a cane" isn't an answer to an undetected condition, particularly one that might be amenable to treatment.

The medical tests that you mentioned aren't enough to evaluate for all of the possible causes of your symptoms. At a minimum, another neurologist should do another evaluation to ensure that you were/are worked up thoroughly.

It's important to note here that your MRIs were negative. MS can exist before lesions show up on MRI. But the current lack of lesions means that -- based on the MRI findings alone -- you're no more likely to have MS than any of the other conditions that can cause your signs and symptoms. There are no signs or symptoms that are unique to MS. And that means that you have to be careful to not arbitrarily choose MS as the disease to fixate on simply because you have some of the same symptoms as other people here on the form who do have MS. It's going to take more time and more thorough testing to rule out all other possible causes AND evaluate whether you have other indications that are characteristic of MS.

It wouldn't hurt for your PCP to (re)evaluate your case as well. You didn't say anything about seeing other specialists, such as an ENT to evaluate the dizziness or a cardiologist to evaluate other vascular issues. You didn't say if you had blood testing to evaluate for metabolic conditions and rheumatic/collagen-vascular diseases.

Finding out what's at the bottom of your troubles could be a long, frustrating process. So my advice is to try not to make premature assumptions and try not to get discouraged if you get a result you weren't expecting. Just keep on going until all of the pieces get uncovered and evaluated. It might be hard, but if you go one step at a time, you can do it!

[Thinkimjob]

Hello. My 67 year-old father trips and falls (I know, you're a lot younger), because he can't feel his feet properly, due to circulation issues, and he has arthritis in his fingers and toes.

He gets dizzy because his blood pressure is too high, and then drops rapidly as soon as he has his blood pressure tablets.

He doesn't have MS - but then who knows because he won't do anything about the arthritis, or getting the blood pressure sorted.

[sunshine_elaine]

Thanks for the suggestions everyone! The neurologist did do a bunch of blood tests, some I don't remember ever having before like vitamin levels. They all came out OK.

My blood pressure is normal, never had any problems with that. I had some chest pain and didn't do well on a stress test about two years ago and had a heart catherazation to look for any blockages but that came out OK, too. So I got a clean bill of health from the cardiologist.

I see an Ear Nose Throat doctor fairly regularly since I had thyroid cancer several years ago.

I don't mean to sound like I'm trying to make my symptoms match up to a diagnosis of MS, I'm just trying to figure out what is going on with me since the only thing the neuro wants to do now is to have me come back in for a recheck in April. I can't imagine what she thinks will happen to my symptoms between now and April and I can't understand why she can't give me any kind of a clue as to what's going on. Guess I've just never went to any doctor as many times as I've seen her, had so many tests run and not gotten an answer as to what is going on.

Since I was thinking about going to another neuro to see if they could figure out what is going on, I thought I'd check with the MS Society to get the name of a neuro they could recommend. Maybe the new neuro could tell me it definitely isn't MS and tell me what he thinks it is. Turns out the neuro they recommend is the first neuro I saw years ago and whose office lost my MRI and evoked potential test results!! Before I found the neuro I'm going to now, I asked two different doctor's offices about the old neuro and they both told me not to go to him because he is so disorganized. And yet, this is the neuro that the MS Society recommends. Now I'm really confused and seriously thinking about not seeing any neuros at all.

[Redwings]

Hi Elaine:

Thanks for filling us in on your background. I can tell you're confused because some of your thinking is a little scattered. There are some areas that, if you focus down more specifically on them, might give you some ideas about what to do next.

First, the doctors whose names the MS Society provides are not recommendations or endorsements (and they do say that themselves). They're names they've been given by others who -- at least at one time -- found those doctors to be interested and experienced in treating MS. The MS Society would probably be interested in hearing your experience with the doctor you went to so they can reevaluate whether they want to keep him on their list of names.

On that topic, you said that two doctors' offices told you not to go to that old neuro, but did they give you leads or recommendations of neuros you should consider going to? It seems that information would come in really handy for you right now.

Second, you got a clean bill of health from a cardiologist, but that was two years ago. The MRI showing some blockages of blood vessels is recent. So if you want to investigate all avenues, it could be beneficial to take your MRIs, MRA, CT scan and carotid ultrasound results to a cardiologist and let that specialist give a current opinion of the brain vessel blockages from a cardiac perspective, no matter what that opinion is. An opinion from two years ago isn't applicable now.

Third, you said you've been seeing an ENT fairly regularly since you had thyroid cancer. But what about the dizziness you've had for years? Have you never mentioned it to your ENT? What about the fall you had in July and the loss of balance in November that could have injured your granddaughter? Did you not tell your ENT about those so you could have a vestibular workup?

In addition, your ENT could be a good source for a referral to a new neurologist.

These are significant areas to focus on in the absence of ideas from your current neurologist. It also appears as if the communication between you and your neuro is lacking if you've been left to you own devices in trying to get answers that your neuro can't provide.

Sometimes the body just doesn't readily give up enough clues to make a diagnosis from. But before deciding that that's the case, it's important to make sure that you've consulted all of the appropriate specialists for the signs/symptoms you've been having.

Consulting a neurologist is indicated for neurological problems. But a neuro isn't an ENT or cardiologist or rheumatologist, and it's an error of thinking to expect her to be. From what you've told us, it sounds like you have or have had access to specialists who are appropriate to the problems you've been having, yet you haven't been using them for those problems and are instead putting all your eggs in the neurology basket. That could be why you're feeling so confused.

So if you'd really like to get to the bottom of what's going on with you -- right now, not two years ago -- it's in your best interest to be worked up by another neurologist (perhaps an MS specialist at a large university medical center or specialty MS clinic) and by your ENT -- about your dizziness and falls, not your thyroid. A consult with a cardiologist might be a good idea. And you should get a copy of all of the bloodwork your neuro ran to be sure you were tested for rheumatologic/collagen-vascular diseases in addition to vitamin levels.

You don't have to follow up with any of these things if you don't want to. But then you do have to willing to gracefully accept the consequences that result from not following up. Until you figure out what you want, nothing's going to happen. Once you decide what you want, you can start making a plan for how to get it, and the whole process will become much clearer.

[sunshine_elaine]

Wow, Redwings, that's a great response! You brought up so many good points that I hadn't even considered!! You are right, I've never told the ENT about the dizziness. I told the nurse practioner at my family doctor's office--don't get me started about not being able to see my family doctor instead of the nurse practioner!--and she's the one who sent me to the neuro who just happens to be in the same practice as my family doctor. The nurse practioner is one of the two people who told me not to go to the old neuro and I have to admit I wondered if it had anything to do with her wanting me to see the neuro in the same practice!! But, since I didn't care for the old neuro anyway, I thought I would go ahead and go to the neuro she recommended. However, I did wonder...is she sending me to see the neuro because she's good or because she's in the same practice as my family doctor??

You've given me a lot to think about. Maybe I need to go back to my family doctor and see what she thinks. Problem is that I was so upset that her office didn't tell me she was out on sick leave when I made my yearly appointment and they had me see the nurse practioner instead, I've been thinking of looking for a new family doctor. LOL But I keep telling myself that it was the office's fault and not the doctor's so maybe I should give her another chance.

Thanks for all of your suggestions!! Guess I've at least made the decison to not give up on finding out what is going on.