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[prm]

I am a 33yo white female, with no abnormal medical history until recently.  Over the past 13 years or so, I have had many diffuse symptoms which wax and wane and don't make any sense.  My biggest complaint is memory difficulties, to the point of not being able to work as a residential designer.  

I am being seen at a well respected teaching hospital. Working memory and Logical memory have been pin-pointed as deficient in psych-elvals, Right finger tap test was slower than right (I am right handed), I have an abnormal MRI (3 non specific lesions in white matter  - but no change in second MRI taken a year later)Lumbar Punct: clear & pressure norm.    Blood work up, cardio-stress test and echo(?) show no abnormalities (including Mitral Valve Prolapse).  I have had mild numbness on the right side which lasted about 2.5 - 3 years then gradually over months has come back.  I have had several disturbing episodes that I would like your thoughts on (in order of appearance):

1. Awoke in the middle of the night with chest pain; has happened before, lasts for 5 -15 mins, with no consequence.  This one was different; I had an intense pain on the left that radiated in an unmistakable curved path from the center of the chest pain down in an inverted "U".  The chest pain lasted about 15 min, but for the next 2 - 3 weeks it became increasingly difficult to sleep unless I was elevated. A week after symptoms subsided (yes, I know stupid) I went to the local ER (not the teaching hospital) and they found nothing.

[CCF-Neuro-M.D.-PW]

It has taken me a while to sort through your post! In general, one can expect a quicker and more informative response from shorter questions, in the internet setting.

I cannot give you a clinical diagnosis over the internet, but I will try to informally answer some of your questions

1) the symptoms in 3) sound like an unrelated UTI

2) the chest pain does not sound neurological so should be dealt with accordingly in a non-neurological fashion

3) Brain fog and memory difficulties can sometimes be more accurately be analysed by standardised tests such as neuropsychological testing. A review of you medications for side effects is essential also.

4) re pins and needles in the foot - I would not worry too much about this - you are most likely within normal range for pins and needles

5) an EEG may be benefical in terms of the brain fog and panic snesation to investigae for seizures, although the likliehood of this is low

6) have the flashing light and visual lines evaluated by an ophthalmologist, my inital impression is that it sounds retinal rather than neurological

General laboratory screeing for ie diabetes, electrolyte disorders, thyroid dysfunction, should be done if not already

Otherwise as in your  MRI report and tests, there is no hard evidence for a neurological disease, keep attending your doctors, time I suspect will support this statement. Good luck

[prm]

2. May 04 Several weeks after above chest pain; mild slurring of speech, dribbling when drinking, and difficulty swallowing (food and drink "going down the wrong pipe" several times a week to several times a day) lasting from 2mos - 7mos - speech problems lasting the longest.

3. Aug 04 Intense shock like pain going from the groin, shooting to the mid thorasic region.  This pain took my breath away, and I couldn't speak for a minute or 2.  (I had had similar pains, not as intense) for probably 10 years with no consequence.)  The next day at around 2pm I realized I hadn’t urinated since 8pm the night before.  I seemed to lose the sense of the urge to urinate.  I made a conscious effort to make sure I urinated enough.  This lasted for several weeks and gradually got better but its still not right.  I have had leaking when standing up after urinating, sensation to urinate but hardly any urine, and urine smells that probably indicate UTI’s.

4. Brain Fog and Fatigue (not tired!!)  This has come and gone for years, however it is getting worse and worse.  I tend to measure my difficultly with my ability to handle benign tasks, such and following recipes.  I usually read a recipe twice once to get the general gist an the second time just to go over what utensils I am going to use, the technique, the order, the timing.  I will go through periods where I have to refer to the recipe 12+ times for each ingredient, or figure out what bowl I am supposed to be using (even though I already have it out).  When I am like this, everything takes so long and fun things start to be come a chore.  The fatigue usually coincides with the memory difficulties, but varies in intensity.  The fatigue can be completely debilitating.  When fatigue is a factor I am always economizing my energy – because, after years of fighting it and “pushing through” – I learned pushing through just causes a void of energy to become a black hole.

5. I often go through periods where I am “beamed in from another planet”.  Really, it happens while doing anything, cooking, designing, DRIVING.  This combined with the slow thinking I experience (where I seem to be running at 1/3 speed every one else is).  I have much difficulty driving to the point where I feel that I am more dangerous than an extremely drunk person.  I drive slower when this happens, I forget where I am going, can’t recognize where I am and it takes me 5 to 10 minutes to re-figure all these things out while driving.  What is happening here?

6. What could possibly cause a person to loose the “pins and needles” sensation after a body part goes to sleep?  In other words, when I have a body part fall asleep, I don’t have the painful pins and needles sensation at all while it comes back.  I have even had my leg fall asleep to the point of not feeling pressure in the foot.  I don’t know when this started. Some time early this year, but its body-wide and still here.

7. Feb05 I don’t know how to explain this one without it sounding like a panic attack – but I am relatively sure it isn’t.  I don’t think that the heart stopping is part of a panic attack, here it goes:  This is what I remember:  I felt a strong vacuum sensation in the upper central chest area. Then I sort of remember asking myself in disbelief if my heart stopped. Looking for carotid pulse while noticing blacking out was becoming serious.  Made a conscious decision to try to get to the chair 2 steps away, instead of the phone 6 feet away;  I knew I wouldn’t make it to the phone, even if I did make it I wouldn’t have been able to use it. Couldn’t find my carotid pulse.  By the time I stumbled to the chair I had minimal vision.  I pretty much knew by this point I was probably going to die (it wasn’t a fear, it was a knowledge).  I put my head on the desk and counted in the off chance I would wake up.  I got to 6 and just when I thought I had only a second more, my heart started.  I stayed with my head on the desk for maybe 15 minutes and everything was basically fine after that.  No one was home at the time and I never mentioned it to any one.

8. Apr 05  I stop moving bowels for about 5 weeks.  And I mean nothing.  I didn’t have any pain and when I did start to go. It wasn’t that dramatic.  I saw my doctor after w weeks of not going and got the usual eat more fiber and drink more.  In mid Jun after things started moving and started getting painful, I saw a different doc.  Tested for blood in fecal: neg.  Again, drink more, eat more fiber.  The GI pain would get worse and get better.  The ulcer causing bacteria and other such work up on the stool came back neg.  Went again to doc with GI pain that was getting more severe and still not producing 50% of the stool I used to.  Tried  Protonix, no change, currently on Librax (just a week) and I get pain after meals.  The suggestion of more water and fiber is a joke for my diet.  I have a very healthy diet, not health fanatic but just plain healthy.  No I am not vegetarian. No I am not at all over weight. 5’7” 110lbs. -125lbs. I have gained weigh atypically for me since mid-summer.

9. Sep 05 Sometimes I have a flash of light in one or both eyes when I move my eyes from right to left, it looks like an arc or a copy of my iris in white light.  What is causing this? What is the significance of the pin point lights in the eyes? They are though out my whole vision.  Incidentally, the intensity and frequency of both the pin point lights and the arc lights corresponded.  Now they seem to be waning.

10. I have been having difficulty for months maybe, even over a year, with the feeling that I don’t have complete peripheral vision, however, when assessed everything seems fine.  Recently, I think I may have discovered a possible explanation for this perception.  The vision in the lateral half of my right eye seems to have the slightest rose hue to it, and it looks like the contrast is misadjusted (like on the tv).  There seems to be a very distinct delineation right down the center of my vision between the two halves.  What could cause this and what does this indicate?

I am sorry for the excessively long post, but I have been waiting months to post a question.  In addition, I am very good memory-wise right now, so I feel able to give a clear description.  

Doctors are saying its anxiety and/or depression.  However, the only things I have minimal stress except for this diagnostic process, I do not dwell on what I don’t have or can’t do.  I have several ideas and plans for the possibility that I will not be able to be a designer in the capacity I had planned on, or even any capacity at all.  And being a volunteer EMT (with about 9 calls a year - no kidding, we are rural), with a background in psychology, I am well versed in recognizing and devising coping strategies for stress, anxiety and depression.  But I am having a very hard time conveying this to doctors with my memory issues – I just can’t thing fast enough to counter point any line of thinking in real time; which is very atypical for me.

At this time we have yet to rule out anxiety and/or depression (I am scheduled for an appt for that eval) and GI issues.

Please……I know this is long and complex, but I need help.  I have a lot to offer and I am in a holding pattern right now.  With the question of whether or not to have kids and other things in the balance, I need to move on from this diagnostic process one way or another.  And I have the gut feeling something is wrong and needs to be taken care of early.

Thank you for taking the time that you do to answer these posts, I have read many of the posts while investigating my situation and have found them very helpful.  I appreciate the time you put in and know it is because you, too, love what you do.

Please  help if you can.  Thank you.

[prm]

Rheumatologist did full work up for Lupus including CNS Lupus - that's not it.  She also said that she really didn't think it was fibromyalgia.

Also, I have had other symptoms such as ringing in the ears and vertigo (not disabling - but significant).  I also had chronic pain which kept getting worse. But I was put on nortryptiline 25mg at first.  It was intended for sleep, but my chronic pain which had NOT been alleviated by NSAIDs went almost completely away with in an hour of taking the first nortryptiline.  Played with the dose, balancing out at a dose of 35 mg/day.  Then a few months later parathesias, ringing, started to come back.  Upped to 40mg, 50mg was too much (I found the drug even in these small doses made me easily angered).  Stayed that way for about a month then gradually went off.  Ringing in the ears has returned, (quite loud at times) but I am not taking the nortryp for that!

Other odd symptoms:
May 04 For weeks I could not clean my ears they were constantly clogged, like being under water, or severe elevation change.  If I q-tipped them I couldn’t hear out of either ear,  I would keep trying to swallow, to "pop" them, but they would just close again.  Not cleaning them seemed to prevent this from happening.  That lasted for a few weeks or months.  At the same time I had a nose that wasn't runny, but occasionally when I would bend over or look down, a large amount (maybe 3cc - 5cc) of clear liquid with the viscosity of water would run out of my nose.  Yes, in hind sight, I probably should have checked to see if it developed a CSF halo, just in case, but I didn't - this other stuff hadn't happened yet.  I just thought it was odd, and for it to be CSF a lot other things would have had to been wrong.  Maybe it was some how, something from the ears.  It only happened a few times (less than 10).

[prm]

Correction:  Right finger tap test was slower than left (Rt handed)

And I have an increasing number of muscle spasms in the right trunk,leg and arm.

Thanks again, sorry for the hacked nature of the post.

No more, I promise.

[kwag]

Have you ever researched Lyme?  Please google it and read all you can.  Google Sue Massey and Lyme and read it all.  Before you say you don't have Lyme, look into it.  I have lost so much time in the past by not looking into everything.  kw

[prm]

Lyme: I had it years ago and treated it with in days of being bit.  Had the classic bull's eye mark and everything.  I had 4 or more weeks of antibiotics so, I am about as good as its going to get for that case.  I will always test pos for lymes since having it.  Thanks for the comment.

[nosol]

Hi,

I would suggest going to a Neurologist in an academic center and getting the following:  

1.  Another MRI + gadolinium (to check for recurrence or change in those white matter spots) of Brain and possibly spine as well.  This is needed to rule out Multiple Sclerosis or related disorders.

2.  EEG (electroencephalogram) to check for any possible seizure activity.   Mild nonconvulsive seizures may be responsible for some (not all) of your symptoms and should be evaluated

3.  Spinal tap for oligoclonal bands / myelin basic protein (again to rule out MS)  and I also agree w/ the Lyme suggestion from another post.

Good luck.

[patsy10]

I really think you should consider the fact that you may not have gotten rid of the Lyme.  Your symptoms are profoundly classic of neuro Lyme.  People are told 4 weeks is enough antibiotic and that is not necessarily the case.  Lyme would explain all of your symtoms.

I would see a doctor specializing in Lyme disease.

[MICH2604]

hello,

Please check out lymenet...do a search and you will see lots of people just like you...if you do nothing else check out the site.

Please go see a doctor specializing in Lyme disease.  you have many of the symptoms that i have.  I also have had every test done imaginable. Trips to the ER in so much pain, and they have found NOTHING!  4 weeks of antibiotic is not enough, you need a lot more then that.

[prm]

Thanks for your thoughts everyone.

I should clarify the MRIs  Both done at well respected Teaching hospital.  Both head and Cspine done, both with gad contasts, taken a year apart.

I have had symptoms before lymes, Its looking unlikely.

[kwag]

4 weeks on antiobiotic treatment for lyme is not adequate.  After being treated successfully, a person does not have the symptoms ( or is at least as close to symptom free as they can be)and tests neg.  You can get lyme from fleas, and humans and elsewhere.  Your family probably has it as well.  There's a reason so many of us are telling you that what you have is classic for Lyme.

[Citizen T]

One of the hallmark signs of advanced Lyme is joint pain.   Elbow, knees, etc.     Keep this in mind before becoming hysterical.   It wouldn't hurt to do a Lyme antibody blood screen and if, and only if you're allready doing a lumbar puncture, check the csf fluid for Lyme as well.  good luck

[prm]

CSF showed no lyme.

I am glad you are all pointing out that I forgot to mention that above.  

I am aware Lyme can be very different from person to person, and very slow to develop, even after extensive treatment in some cases.  But with out evidence of lyme in the CSF - It is extremely unlikely to be the cause.

Thanks though.

[prm]

And I forgot to mention I had a neg Evoked Potentials test

[prm]

It has taken me a while to sort through your post! In general, one can expect a quicker and more informative response from shorter questions, in the internet setting.  
***Yeah, I am really sorry about the blitzkrieg but I had been waiting months to post – and stuff keeps getting weirder and weirder, so I couldn’t really limit to a specific group of symptoms.  I figured if it took a while for a response, that was probably good for me, it meant it wasn’t a quick review.  Unfortunately, at this time, I can probably express the depth of my gratitude best, only within the words of exasperation with my bewildering situation.   The fact that you take the time to, be a second set of eyes, to go through this mess….I deeply hope this work enriches you.

I cannot give you a clinical diagnosis over the internet, but I will try to informally answer some of your questions

1) the symptoms in 3) sound like an unrelated UTI
***Not clear if you mean both 1&3 sound like a UTI or just 3.  Type-fart, maybe?
**1) I should note I did elevate my chest, not my head.  In fact, there were a few days I had my back arched over pillows, so that, although my head was elevated, it was not supported by a pillow, so that it hung down, and I was actually looking toward the wall behind me.
**3)As far as a UTI as an explanation for #3, I forgot to mention that these shock like pains are not always from the groin like that, in fact that may have been only the 2nd or 3rd time it took that path.  Usual they are in the legs, arms and trunk (anterior and proximal from midline).  I don’t remember any in the shoulders, back, neck or head (with the exception of cluster migraine – which are some what similar in description, but may be only migraines).  I also get pains in two different sides on completely different nerves, several vertebrae apart zapping in synchrony.  (This really pisses me off because I’ve been taught that there is no reasonable explanation for this – but its happening anyway).  And the way my pain in #3 went from a specific point, in what seemed to be the right upper portion of my vagina, near or including the cervix, across the midline to the left thorasic – again leaves me at the point of, no one is going to believe me, I can’t research it because I don’t know what to call it, because it can’t happen – but I perceive it’s happening.  Ahhhh!)  I think you have helped me to better understand my neuro’s dismissive response, because I might not have explained the above to him either.

2) the chest pain does not sound neurological so should be dealt with accordingly in a non-neurological fashion
***What would a neurological heart problem look like?  I have had three “chest/heart” episodes one mentioned in #1 April 04, the other in #7 Feb 05.  Here is the third:

Again, I hesitate, with utmost dread, to communicate another heart incident.  I am not sure when it happened, all I can say is it probably happened in Sep-Oct 05.  Woke in the middle of the night - heart slightly pounding with the most blatant arrhythmia, an elephant could have diagnosed.  There were gaps with no beating longer than 2 normal beats and tachycardia so fast I couldn’t gage it.  The irregularity was nearly incomprehensible, very “Hollywood”.  I had yet another, mysterious, un-confirmable, dubious, maybe life threatening, completely deniable symptom I didn’t want to report.  After all, the heart doc told me after my stress test, very firmly, in no uncertain terms: it was “not my heart”.  I did nothing.  I don’t remember pain and I don’t remember any other sensations.  


3) Brain fog and memory difficulties can sometimes be more accurately be analyzed by standardised tests such as neuropsychological testing. A review of you medications for side effects is essential also.  
***Librax right now for IBS which, unfortunately does not seem to be working (…Ugh).  Colase is also used to back it up (Ha! Or not back it up! – sorry, bad humor).  

4) re pins and needles in the foot - I would not worry too much about this - you are most likely within normal range for pins and needles
***This is another thing that can’t happen, I know, all other sensation would have to be gone before this could even happen.  The fact that I have two things that can’t happen is insanely scary.  But I really and truly mean I had NO pins and needles response.  Other sensation was completely intacted – I know this can’t happen and I understand your response, but I beg you to please believe me, and please try to think of the “zebra” explanations that there might be.  The only thing I can offer is: this started happening at the same time I was getting my right side sensation back.  Even now with a bit of the sensation coming back I can still move and slap around a body part while its coming back from “sleep”, the entire time, with out any discomfort beyond tepid water would be running over the skin.

5) an EEG may be benefical in terms of the brain fog and panic snesation to investigae for seizures, although the likliehood of this is low
***Would you push for an EEG?  If so, what would be your most conspicuities indicator the “heart stopping episode” and/or the “beamed in”?

6) have the flashing light and visual lines evaluated by an ophthalmologist, my inital impression is that it sounds retinal rather than neurological
***Optho looked at retina and said it was fine, saw no indication it was anything other that vitreous dynamics.  I did forget to mention the eye jumping thing, but I will call the office for an answer on that.

General laboratory screeing for ie diabetes, electrolyte disorders, thyroid dysfunction, should be done if not already
***Diabetes, Thyroid I can definitely say yes, Electrolyte I assume has been done.

[redhed]

hey prm.  um, i hate to beat the dead tick here, but you have almost every symptom that's been making my life miserable, and i was just diagnosed with lyme.  i mean, we could be twins.  i went on the tetracycline, and i'm already seeing an eradication of pain and symptoms.  heart has started to level out, fatigue is melting away.  joint pain is just less and less.  balance is so much better. mental cognition greatly improved.  knees not swollen all up.  i've been cycling in and out of this for about 6 months now.  floaters got bad, then eased off.  swollen neck glands normal finally.  i'm thinking you just maybe should try the antibiotics for awhile and see.

my doctor, who has had lyme herself, told me i may need to stay on this treatment for up to 6 months, maybe longer.  i just think you stopped to soon.  hey, why not try it, couldn't hurt, right?