Brief Answer:
Neurological entity still possible in my opinion

Detailed Answer:
Good day Mr. XXXXXXX- My name is Dr. Saghafi (Dr D for short if you'd like) and I am neurologist with an interest in multiple sclerosis for which I have been an invited author on the professional website known as SERMO (can only be accessed by physicians). I've carefully read your story and looked closely at your labs and your MRI report. I hope I can help you put some of your workup in perspective so let's see how it goes.

First of all, I understand that you've been dealing with what appears to be an ongoing and slowly deteriorating set of symptoms as about 10 months ago. The symptoms, however, do not involve any motor paralysis or weakness of the body. Rather, there are visual symptoms, feelings of being in a fog, anxiety, and unbalanced sensations. Add to that have been symptoms which are resolved of numbness and tingling in the hands and face, heart palpitations, muscle twitching, tunnel vision, and panic. I also understand you've gone through extensive testing to date which concretely has demonstrated 12 white matter lesions in the brain but not in areas of the corpus callosum, cerebellum, or brainstem. Other testing for infectious causes has been either negative or indeterminate. Visual and auditory evoked responses are also negative.

You have also not mentioned anything in your entire story or history of any type of headaches of any sort. Do you have any type of headache that you've been dealing with or treating on your own for any length of time? Perhaps, you've had it for so long that you simply don't pay attention to it anymore.

In the workup by the MS specialist have you had a lumbar puncture? And in your laboratory workup have you had metabolic labs to include thyroid function, vitamin B12, and Vitamin D?

Also, are you a smoker, do you have high blood pressure, diabetes, high cholesterol, or any other type of chronic medical illness? Is there any such problem within your family history or neurological or even psychiatric disease in your family?

In our practice and in a case such as yours where there are at least 10 lesions in the brain which are otherwise unexplained we would likely ask the patient to consider a lumbar puncture. I would at the same time recognize the symptoms you do have with some of the negative testing results as being related to psychological issues and ask that you see a NEUROPSYCHOLOGIST for a complete and thorough workup. I would then, look at all these results en todo along with an expanded set of laboratory studies as mentioned to see if we could better explain the T2 signal hyperintensities before stating categorically that some form of demyelination or neurological entity is definitely not afoot.

In the mean time I would ask you consider the following points:

1. maintain as normal a schedule of daily activities as you possibly can and follow your doctor's advice in terms of medications etc. Are you physically active? I suggest that if not you take some time out of your day (at least several times per week) and get into either a gym or some outdoor activity that can press you to some higher point of exertion. Of course, this should be with the permission and advice of your doctor but I endorse physical exercise as a way of treating "brain fog."

2. Also, start keeping track of your sleep patterns as these may have some pertinent bearing on your condition in the morning which will likely set the tone for the rest of the day. Are you having trouble falling asleep, staying asleep, nightmares, etc.? is your sleep restful when you awaken in the morning or do you still feel like you have to drag yourself to work every day?

Please feel free to write back with some other information and I'll be happy to try and help work some more on your case. All the best in the mean time don't forget to hug and appreciate those wonderful children and wife you must have.

Regards,
Dr D

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Brief Answer:
Recommend addressing headaches

Detailed Answer:
1. I do have headaches. Never really did before, but do now. I have what feels like a constant pressure in my head. Started in about Dec 2013.

>>>> Your MRI results could also be consistent with an entity known as UBO's (Unidentified Bright Objects) which are seen in headache patients, migraineurs for the most part. I believe there would be good reason in your case to actively pursue GOOD treatment for your headaches by seeing a headache specialist. I am the Director of the Headache service at my institution and I always ask my patients to fill out detailed information in the way of a diary. We then, analyze the results before prescribing any type of specific treatment. I believe that addressing your headaches will go a long way to resolving at least some of your symptoms.

2. I did not get a lumbar puncture. The MS specialist felt confident that it was not needed and that MS could be ruled out. They did the Spine MRI.

>>>> I can't argue the point of the MS specialist since the ONLY thing that is really in front of us are the 12 lesions of the MRI but that is nonspecific and can be seen, as I just stated above, in other conditions. With the negative clinical picture for more classical MS such as the waxing and waning of severe numbness/tingling/limb weakness which can come and go over time and with negative evoked studies I agree that an LP would be less likely to show anything at this time.

3. My thyroid came back fine as well as Vitamin deficiencies. All fine.

>>>>Ok. Be aware that in my practice as well as in our department many neurologists like to see Vitamin D levels at much higher than just "normal" levels. In other words, most ranges of normal fall from 25-100 and most people tested in your age range and with where you live is probably in the 20-30 range. I always like to see my neurology patients at a minimum of 40 if not in the 50, 60, or even 70 range. Again, something to keep in mind but at the final bell it becomes a discussion between you and your physician since you've not provided any specific numbers for me to review.

4. I am not a smoker currently. I quit 3 years ago. But I did smoke for about 17 years previous to that. Could this cause lesions?

>>>>Smoking cigarettes is a common cause for hyperintense signals on an MRI and these may be scattered and permanent. It is even felt by some that just a HISTORY of smoking, even if one has STOPS, places patients at higher risks to develop white matter lesions on an ongoing basis. So YES, these lesions could be related to the smoking history.

5. My first cousin died of a very aggressive form of MS at the age of 35 a few years ago. But there is no psychiatric illness in my family that I know of. My mother is adopted so I can only speak for my father's side, to which there is nothing.

>>>>MS is generally not considered to be hereditary although the literature certainly contains evidence of families with MS. However, your symptoms and testing so far do not support anything of that nature. If you check with your cousin as to how he evolved and was diagnosed and what his MRI and other studies found, I wouldn't be a bit surprised to hear that there is a significant gap between your 2 presentations.

In conclusion,

1. I believe that your headaches may be more significant than you may imagine and whether they are the CAUSE or the EFFECT of what's going on I can't say. However, I believe addressing them will help you in some NONTRIVIAL measure.

2. I believe that the smoking history is potentially important here as it could very well be related to at least some of the lesions in the brain. Also (and I don't want to make you feel old because YOU AREN'T) but aging is also probably the #1 risk factor to the development of white matter lesions in the brain in the absence of any other significant disorder or deficiency.

3. Even though you say that it is hard to get back into the type of shape you were because of your symptoms I think it will do more good than you can possibly know if you make a real college effort at getting back into the swing of physical fitness. It can be at your own pace, at home if you will. But I strongly urge you to consider a regular and routine set of physical activities perhaps with someone's supervision such as a trainer or family member who may be interested in getting in shape as well.

4. I would first address the headaches by seeking out a headache specialist or at least a physician who has an interest and training with headache logs and treatment protocols that could help you before insisting on doing anything invasive such as an LP, especially for all the reasons that have already been given to you by the MS specialists.

Be well.

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Brief Answer:
Still some work could be done

Detailed Answer:
Hi,
Right you are sir! My bad. There are your numbers....and LOTS of them! Please excuse me...when I opened your file (I'm new to this platform as of today) I only thought the first page was all you had for labs. Didn't check the SCROLL button.

At any rate, your Vit. B12 is perfect. Your Vit. D, however, at 88 on a normal of 76-250 would very well correspond to what I would consider lower than where I'd like to see you. The scales I'm familiar with from our reference labs use different units but I'm pretty sure that if we converted to our system we'd find your numbers much lower than where I'd recommend you be if being treated in our clinic. Therefore, I would treat such a vitamin D value with replacement therapy in the form of high weekly doses of Vitamin D followed by a good daily regimen and redraw labs in about 8 weeks.

Benzodiazepines and SSRI's are usually used TO TREAT headaches although some of the SSRI's do have reputations for causing them. That being said, I would have to say that at this point in time and with the data you've presented so far, my suspicion for the MRI lesions to be related to MS is very very low compared to anything that could be a potential cause.

I hope you find a way of getting back into the thick of it because that's impressive that did mountain biking and marathon running before this all happened. My mother began running marathons at age 55 and she is still running at age 80 though she goes not much further anymore than about 5 miles at a crack.

I agree with you that for that level of activity to this point is hard to explain with mere "depressive mood disorder" if there is really no trigger from everything you've said.

I wouldn't throw the towel in quite yet on there not being something organic that could be addressed but I believe your next best step to zoom in on your cognitive complaints would be a comprehensive NEUROPSYCHOLOGICAL evaluation...NOT psychiatric testing but NEUROpsychological testing. They can actually better TEST you for the possibility of "depression/anxiety" and other symptoms that may in fact be present without you even being consciously aware of it- if that makes sense.

Also, if your symptoms DON'T somehow start turning around based on everything I've said or if in 30 days from now you develop something that becomes motor based such as sudden weakness in an arm or leg with symptoms of burning/numbness/tingling that abate in several weeks etc. then, you should ask to get a repeat imaging study done WITH GADOLINIUM CONTRAST. The studies you had were without Gad.

Also, don't forget about good SLEEP HYGIENE. If you're lacking in getting good and adequate or restful sleep you may wish to discuss things with your primary as well. certainly, I'm sure you'd believe me if I said that if you're sleep patterns have been for some reason off center for the past year that everything else could be affected and cause you to be in a fog without much else showing up on either examinations or testing.

In the brief few transactions we've had I believe you do wish to get better and to that end I think you can. Stay in touch and see what you can do to make some head way on getting physically active again and consider seeing a headache specialist to ferret out whether these headaches are primary ones (i.e. caused for no good reason) vs. secondary (i.e. resulting from something else going on such as either medication side effect or this situation you're referring).

Be Well!

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