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Tingling, Fogginess, Numbness and Fatigue For 18 Months
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TheTaoOfRoz81 posted:
I'm 29, male, 5'9'', 160 lbs, exercise regularly and have a decent diet. I don't smoke, do drugs, but do drink (every couple weeks).

I started feeling the symptoms on Sunday, May 31st of 2009. It started with me just feeling more fatigued than usual after sleeping 12 consecutive hours, from midnight to noon. Over the next three days, I began to feel dizzy and perhaps overly drugged in my head. A tingling sensation also made its presence known in my hands and feet, eventually spreading to my arms and legs and increasing in intensity as the days progressed. At times, my cheeks and the inside of my mouth would feel numb. All of these symptoms, especially the tingles, the fatigue and the drugged sensation, were rather constant for the first 2-3 months. This made it extremely difficult for me to focus on much for a certain period of time. It was even difficult to walk a great amount. No matter how much sleep I'd get the night before or in an afternoon nap, I'd still feel like I hadn't slept at all. Due to all these symptoms, not finding any answers from the doctors and not seeming to be improving in health, I became rather depressed after 2+ months with the condition.

After approximately three months, the intensity of the symptoms became less constant. I no longer felt the numbness in my cheeks, lips or the inside of my mouth. The extreme drugged up feeling in my head would be felt only every other day, as opposed to every day. This held true for the tingles and the fatigue as well. Over the next several months, this trend seemed to continue, with the occasional relapse. After a couple more months, the symptoms were only intense every 3 days. Over the past couple months, the rough days have seemed to occur in spurts. Three weeks ago, from Monday through Thursday, I was a mess, but the following week, the symptoms were somewhat tolerable. This past week, just about every day has been right in the middle of those two extremes I just mentioned. It's still difficult for me to get a whole lot done when the symptoms are intense, but being more spread out has helped in that regard. It's rather unpredictable, though, so it's difficult for me to plan very far ahead, as I don't know on Wednesday night how I'm going to feel on Thursday morning, let alone how I'll feel two weeks from then.

I have undergone the following tests: MRI's (of my head and also of my neck/back), two EMG's, a Q-Sart, skin biopsy and a glucose-tolerance test, to go along with a multitude of blood tests. AVM (arteriovenous malformation) was discovered via the neck/back MRI, but some specialists in the area concluded that it wasn't the reason for my symptoms and without it being active, there was no need to operate. The glucose-tolerance test went fine, as did the blood tests, from what I remember. I believe the EMG's, Q-Sart and skin biopsy showed some abnormalities for my age, but not so abnormal that they could specifically diagnose me with anything. Guillain-Barre Syndrome seemed to be a possibility in my doctor's minds, but they labeled it as small fiber sensory neuropathy.

I went to the Cleveland Clinic a couple weeks ago for a second opinion. I had some blood drawn, along with undergoing the following scans/tests: Q-Sart, EEG and MRI's. The results from this Q-Sart was similar to the one in Columbus, where there were some abnormal or grey area abnormal readings, but not to the point where the doctor felt comfortable making a diagnosis. The EEG showed some slowing in certain parts of the brain, but no seizure activity. The MRI's showcased an AVM-like presence around the spinal cord, but it's uncertain if this is the cause of any symptoms. A seizure specialist did bring up some new ideas, saying it's possible I've been suffering from seizures while in my sleep. She also noted that my tegretol levels were slightly elevated and this could have a sedative effect.
Reply
 
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susiemargaret responded:
hello, craig --

thanks for re-posting this in the neurology community. i am hoping we can get some assistance from my two very knowledgeable friends here.

to RED and LIFES -- the above post is one that i transferred here that craig (originally called T) had put in a different community. i asked him to re-post it here for the possibility that one or both of you might see it and be able to respond.

in the original thread, http://forums.webmd.com/3/chronic-disease-and-disability-exchange/forum/749?@807.UVsPaBMkkP0 , i asked craig if he had seen a neurologist or had been tested for sleep apnea. he said "yes" on the neurologist and "no" on the sleep apnea. here is the rest of his response to my most recent post there --

I've seen the following types of doctors: regular physician, neurologist, neurosurgeon, neuromuscular specialist, seizure specialist, AVM specialist, ear-nose-throat doctor and I think that may be it.

I am still having sleep/fatigue problems. It depends on the day. Some mornings, I'm able to get up with little to no problems at a decent time and have a semi-productive afternoon, but there are also days, like these past two mornings, where I may wake up later than usual, feel like I haven't slept at all (even though I had no problem sleeping) and it really takes a lot of energy and effort just to get out of bed.

I have yet to be tested for sleep apnea, but the seizure specialist I saw at the Cleveland Clinic brought that up as well. I've been wondering if this has to do with anything pertaining to my sleep, because it's seemed as if the symptoms are at their strongest right when I wake up in the morning and usually, the intensity slowly wanes as the day/night progress. I've brought that up to different doctors and hinted at a sleep study, but none of them has said anything yet for whatever reason.

I did lose 25-30 lbs. a couple years ago, so the seizure specialist wondered if taking the same tegretol dosage at a lesser weight could have contributed to my symptoms. So, I'm supposed to wean myself off tegretol and be placed on lamictal in the near future, but I have a feeling that's not the problem.

Well, thanks again for your reply. Any ideas or suggestions are greatly appreciated. It kind of feels like I've had to throw a year and a half of my life away and am still not getting any concrete answers. Thanks again and take care.


does either of you have any ideas?

-- susie margaret
what good is gold, or silver too, if your heart's not good and true -- hank williams, sr.
 
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lifes responded:
Hi Craig,

I had to look up Q-Sart. Quantitative Sudomotor Axon Reflex Test (QSART) (also called Quantitative Sudomotor Autonomic Reflex Testing). I wonder why my docs hadn't done that one on me!

Anyway... I have an idea that hasn't been explored. Let me tell you MY story of how this unfolded for me. I was already disabled for many years and had home care aides visiting every day. Obviously, that means *I* had a schedule to meet, day after day (like a "job" even though I was the patient).

Suddenly, the workers had trouble waking me up. And I'm NOT someone who ever sleeps 12 hours or even sleeps in. It only occurred on some days-- other days I was FINE. My only real "symptom" was recurrent ear pain or sinus pain sometimes. Family Doc would send me to an ENT-- but their office couldn't see me for weeks & by then I'd be fine (again), That went on for at least 3 years. Fam Dr, ENT, neuro docs -- nobody could figure it out.

The HHA worker would be here 12p-4p and I'd be fine--- BUT when they returned at 8pm, I'd be "sick"-- i,e. couldn't wake up, didn't WANT to wake up, felt like I had SUPREME fatigue, felt like I had a weird "flu". Sometimes my ear hurt; sometimes not.

Finally one day, I moved to the living room so the HHA could vacuum my bedroom -- the rooms have wide open doors between so it's almost like one big room & I was about 5 feet from the area being vacuumed. Within 20 minutes, I started feeling "sick"-- horribly TIRED, "ill", etc.

As I observed my symptoms over months & months, I noticed my lips/mouth would tingle/feel numb. I also had a WEIRD horrible "depression" (I am NOT suffering depression) and wanted to call ALL of my family to ask "Are you OK--Who died??!!" I really felt SO SAD & practically convinced "someone just died".

Well, what I realized was: I only got the worst symptoms when the HHA vacuumed (I live in a 100-yr old house that breeds dust), or dusted, or cleaned my cat litter boxes & poured new non-clumping (read: dusty) litter. On days when dust was not stirred up, I WAS FINE.

So I went to an allergist (after seeing an endrocrinologist; a microbiolgy disease specialist, and too many other docs to count!). Skin testing showed I was highly allergic to common household DUST. I wasn't allergic to dust mites (that live in dust) but they decided to treat dust mites too. I was also allergic to MOLD.

So even if this is a longshot, pay attention to things like:
1. When your bed sheets are changed (more dust stirred up);
2. When you or someone vacuums;
3. ANY type of dust or mold exposure; for example, old basements that are "musty" typically contain some mold;
4. ANY reactions to papers that have sat around;
5. ANY reactions to handling items that had been packed away.
7. Notice how you feel 6 hours to 24 hours AFTER any exposures, indoor or outdoor (example, touching the side of a dirty car; wind blowing "dirt" into the air)

Maybe you condition has nothing to do with allergies. But, since it comes & goes, environmental allergies could be the culprit. I never had runny nose, watery eyes-- just profound sleepiness! Also, over the years of suffering, I realized my "sudden sadness" symptom was that *I* was not getting enough oxygen and it was *I* who was in a way "dying".

Once I started allergy shots every week, those mysterious symptoms ONLY occurred the day OF the shot.

However, my allergies have continued to worsen since I'm in the house 99% of every day since I'm disabled. So household dust continues to make me ill. I have to wear a re-breathing mask if I'll be in a room freshly vacummed. I can't touch "dusty" items AT ALL. I can't sort bills / papers that have sat for even one week. Newspapers about kill me.

Just observe your symptoms for a couple months and see if there were any environmental links before the symptoms hit. If this does NOT fit you/explain your symptoms, at least it is one more thing you've ruled out. Or, maybe just go for skin testing to be sure.

Let me know what you think.

Lifes
 
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TheTaoOfRoz81 replied to lifes's response:
Thanks very much for your reply. First off, I'm really sorry to hear about your health problems. That has to be incredibly frustrating, to feel trapped inside a place and be cognizant that your symptoms will worsen from being in the house the majority of the time. Has the re-breathing mask helped much?

With regard to my case, the doctors haven't actually tested me for allergies. I'm not sure if that's it, but I don't know that I'd completely rule it out, because like you said, the intensity of the symptoms kind of comes and goes, but, just this morning, I woke up feeling like I'd figured out the correct path to an answer. The past three nights, I've slept extremely hard, had vivid dreams and woken up feeling as if I hadn't slept for a week. Last night, I woke up after about 6 hours of sleep and the symptoms, while present, weren't intense. I woke up again an hour later and the symptoms felt as they had an hour earlier. I then slept two more hours and in those two hours, slept extremely hard, had vivid dreams and awoke a mess, with the symptoms being quite intense. Whatever is going on, I think it is occurring in my sleep. I don't know if it's sleep apnea or perhaps some other sleep disorder, but I'm really starting to think what I'm feeling is due to something transpiring while sleeping. Also, I have had a history of seizures, which were prompted by too much physical labor or stress many times. Due to the intense sleeping, I wouldn't doubt that the vivid dreams could trigger one while in my sleep. So, I think I should schedule a sleep study. Any thoughts or ideas on that?

Thanks again for your response. It's amazing. In just a couple days on here, I think I've received more worthwhile suggestions than I have in 18 months going to different doctors. Take care.

Craig
 
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susiemargaret replied to TheTaoOfRoz81's response:
hello, craig --

i'm really glad we could help!


yes, i think you ought to at least consult a sleep specialist about possible sleep disorders, including sleep apnea (which will require doing a sleep study). you may be able to find a sleep specialist as a referral from any of your drs. however, you can also find them in the yellow pages thru --

-- the top-of-page category "physicians,"
-- then "physicians and surgeons/MD" -- to distinguish them from chiropractors, naturopaths, optometrists (which are different from ophthalmologists), osteopaths, and podiatrists --and
-- then "physicians and surgeons/MD/sleep medicine" (the individual categories of specialists follow a second general section called "physicians and surgeons/MD").

take a look also under the separate yellow pages category "sleep disorders/diagnosis and treatment."

i can't remember if i have recommended this before (i think not), but you may also want to post in the sleep disorders community, http://exchanges.webmd.com/sleep-disorders-exchange . there is a resident expert listed there, but he hasn't answered any posts for about two months, so i wouldn't count too strongly on him. however, i expect that among the people who post are many who have considerable expertise on sleep disorders from personal experience.

in addition, webMD has blogs by various experts, among whom is dr. michael breus; go to http://blogs.webmd.com/sleep-disorders for his blogs (under the overall title "sleep well"), which are listed in reverse chronological order on that page.

finally, you may want to cruise thru the webMD sleep disorders health center, http://www.webmd.com/sleep-disorders/default.htm , for general info on different kinds of sleep disorders.


i also think that the suggestion from LIFES about possible allergies is a great one. for this you will need to see an allergist. any of your drs might be able to refer you to one, or you can find one in the yellow pages under "physicians and surgeons/MD/allergy."

in addition, you might want to post in the allergies community, http://exchanges.webmd.com/allergies-exchange , which has an expert on-board, and take a cruise thru the allergies health center, http://www.webmd.com/allergies/default.htm . more specific info can be found in the allergies guide, http://www.webmd.com/allergies/guide/default.htm , in which you should be sure to check out all of the subsections; these are listed at the left in blue ink under the black title "allergies guide."


i have one more idea, and it is that your sleep problems may be connected somehow to meds that you are taking, probably in the evening or right before bedtime. you could be experiencing side effects, for example. is this a possibility?


please keep us posted.

-- susie margaret
what good is gold, or silver too, if your heart's not good and true -- hank williams, sr.
 
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TheTaoOfRoz81 replied to susiemargaret's response:
Thanks a bunch for all the information. I'll definitely send my discussion along to the sleep disorder and allergy communities.

To answer your question, I have been taking tegretol for about 11 years now (200 mg... two in the morning and one in the evening). I've been slowly weening myself off, as I'm being placed on lamictal. I lowered the dosage to one pill in the morning and one in the evening for a couple weeks and am now taking one pill in the morning.

The seizure specialist at the Cleveland Clinic wondered if in conjunction with my taking tegretol for 11 years, my losing 25-30 lbs. had played a role in any of my symptoms (as the dosage stayed the same). I don't really know what to think. I think it's possible it could play a role, but am thinking it's not playing a central role. Hopefully I'll find out one way or another after I switch meds. The seizure specialist did say that tegretol can have a sedative effect. ::shrugs::.

Thanks again for everything and I will definitely keep you posted.

Craig
 
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susiemargaret replied to TheTaoOfRoz81's response:
hello, craig --

in case you want more info on tegretol/carbamazepine, webMD info on it is at http://www.webmd.com/drugs/mono-5-CARBAMAZEPINE - ORAL.aspx?drugid=1502&drugname=Tegretol Oral&source=2 .

in the "warnings" section, the material says to tell your dr immediately if you have unusual weakness or fatigue; drowsiness is a common side effect of tegretol. numbness and tingling are rare side effects.

i am certain that you are already aware of the caution not to eat or drink grapefruit products while you are taking tegretol; this can increase the amt of tegretol in your bloodstream, which may increase either its beneficial or its toxic effects. the exact effect is not predictable from person to person.

since you have been taking this med for so long, i doubt that it is what is causing your problems, but the possibility is always there. i was esp struck by the inclusion of numbness and tingling as side effects, even tho rare.

reviews of tegretol by other people who have taken it are at http://www.webmd.com/drugs/drugreview-1502-Tegretol Oral.aspx?drugid=1502&drugname=Tegretol Oral&monoId=5&monoTitle=CARBAMAZEPINE .

i know you are switching to lamictal/lamotrigine (see PS). i have taken lamictal for years (it is often used as an antidepressant) and have never had the slightest problem with it. of course, that is no guarantee for you, but i thought i would tell you of my experience.

what is the next step you are taking?

-- susie margaret

PS -- webMD info on lamictal/lamotrigine is at http://www.webmd.com/drugs/mono-7217-LAMOTRIGINE - ORAL.aspx?drugid=8486&drugname=Lamictal Oral&source=2 .
what good is gold, or silver too, if your heart's not good and true -- hank williams, sr.
 
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TheTaoOfRoz81 replied to susiemargaret's response:
Thanks once again for all the information. I made a bunch of phone calls today. I'm having trouble getting on the same page with my neurologist, but am hoping he'll phone in the prescription for lamictal tomorrow and I can get started on that in the next few days. I also scheduled an appointment with my physician for next Tuesday, so that he can refer me to a sleep specialist for a sleep study. I'm not sure how long the waiting periods typically are for such studies, but I hope it's not terribly long, so we can start getting some answers for a change. I'll be sure to let you know when I hear word about it. Take care and thanks again.

Craig
 
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susiemargaret replied to TheTaoOfRoz81's response:
hello, T --

it seems like you're making progress, even if it seems slow to you! in one day, you managed to reach your neurologist and to schedule an appt with your primary-care dr about a sleep specialist. you reached a person with some authority in two drs' offices in one day; i find that an astonishing achievement!

when i was researching tegretol, the sites said over and over that it should not be taken concurrently with lamictal. i don't remember why, but i could probably find it again if necessary. so, are you off or almost off the tegretol completely?

when you see the sleep specialist, be sure to ask about sleep disorders that might be different from or concurrent with sleep apnea.

keep us posted.

-- susie margaret
what good is gold, or silver too, if your heart's not good and true -- hank williams, sr.
 
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TheTaoOfRoz81 replied to susiemargaret's response:
Hello again,

Yeah, I have made some progress the past couple days. I made some more phone calls today. My neurologist here in town is being a bit of a pain, so I'm going to be researching for a new one. But, I set up another appointment for next Thursday at the Cleveland Clinic, so I'll have three appointments that day. The first, which I scheduled today, will be to go over the medication, lamictal, talk about what dosage I should take and the weening myself off tegretol. I have already started doing that. I was taking 2 200 mg tablets in the morning and 1 in the evening. I dropped that to 1 and 1 after two weeks and am down to just 1 in the morning after two more weeks. I'm thinking after next week's appointments, I should be set to make myself tegretol-free and ready to take lamictal.

Thanks again. This next week will be a busy one for me, but I can't wait. I'll keep you posted.

Craig
 
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TheTaoOfRoz81 replied to TheTaoOfRoz81's response:
I just returned from Cleveland a day or so ago and thought I'd update some people about the trip. It took me a while to write my update on Facebook, so I think I'll just copy and paste it onto here.

I just returned from Cleveland today. I had three appointments. First off, I will be switching medications soon, from tegretol to lamictal. It'll be a slow process, as I've taken tegretol for 11 years, so I'll be weening myself off that while increasing the dosage of lamictal over the next month.

Secondly, I underwent a test, called a Somatosensory Evoked Potentials. I can say with no hesitation that it was the most painful test I've gone through thus far. I had a multitude of electrodes pasted all over me, then two needles put on the inside of both ankles. The technician then slowly increased the voltage until my toes twitched. This lasted 5-6 minutes for each ankle and they're quite sore already. The same was done to my two wrists, but those weren't nearly as painful as the ankles. This test was conducted to see if I have multiple sclerosis. The good news, pain and all, was that I tested "normal," so it appears as if MS is not what's causing my symptoms.

I then went to see a neurosurgeon regarding some MRI's and in particular, the arteriovenous fistula which was spotted in them. A neurosurgeon in Columbus stated that even if the AVM was causing the symptoms, the risks would outweigh the rewards in operating around the spinal cord. He said that my AVM wasn't active and there are times it never becomes active in a person's life. However, the neurosurgeon today disagreed and called the other doctor's assessment "silly". He said he wasn't 100% positive, but was fairly certain that what he saw in the MRI were fistulas. He also said that it was a slight miracle that if indeed they are fistulas, we spotted them so early. He was surprised, due to what he saw in the MRI's, that my symptoms aren't worse than they are. But, unlike the other doctor, he said we shouldn't sit around and wait, but take action. According to him, the fistulas will progressively get worse, which will in turn worsen my symptoms, to the point where I could lose my legs. So, he suggested my family and I talk things over and get back to him soon. The next step would be to schedule an angiogram, to take pictures around the spinal cord and see just where (or if) the "short circuits" are. If nothing is found, then he said that perhaps it was just the way I was born. He doesn't think that's the case, but it is possible. On the other hand, if/when they're found, we'll then have to decide what action to take, likely surgery. I may have to schedule an appointment with my local neurologist and get his opinion on it, as he was the one whom initially discovered the AVM-presence.

Lastly, I went in on Tuesday to see my doctor and be referred to a sleep specialist to undergo a sleep study. While it's quite possible that I do have AVM, I honestly don't believe that's the cause of my symptoms. The neurosurgeon today said that with AVM being active, the symptoms progressively get worse. However, in my case thus far, the symptoms have regularly fluctuated in intensity and I have a hunch the symptoms I feel currently may be due to a sleep disorder (central sleep apnea). I have yet to hear back from the doctor, but he said I should be receiving a call Friday or at the start of next week with an appointment. (Update. I received a voice mail last night about it and am supposed to call back next week.)


Well, that's all the news I have for now. I think it's now time to relax for a bit.
 
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susiemargaret replied to TheTaoOfRoz81's response:
hi, craig --

thanks for the update. please keep us posted.

-- susie margaret
what good is gold, or silver too, if your heart's not good and true -- hank williams, sr.
 
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TheTaoOfRoz81 replied to susiemargaret's response:
I went in for the sleep study on Monday evening. I'm not sure how well it went. I think it may have helped if I had at least a day to prepare, so I could have made certain I woke up rather early the day of the study, so I'd then be more apt to falling asleep at a decent hour. The technician did say I fell asleep at some point or another, but I can't remember sleeping much or ever reaching the REM stage, so I'm curious to see how much data they were able to collect and if it signified anything. I have a hunch I may need to go in for another, but we shall see. I'm supposed to be receiving the results in 7-10 days.
 
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TheTaoOfRoz81 replied to TheTaoOfRoz81's response:
Well, I received a call back with regard to my sleep study. It's almost funny. I went in complaining of central sleep apnea symptoms. I haven't had any problems sleeping since the condition's inception, but have slept rather deeply and wake up feeling as if I hadn't slept. So, since I had trouble sleeping on a bed that was rock hard and had electrodes pasted all over me, unable to move much, the doctor is saying I may have insomnia. Eh, I'm thinking this isn't true, but have scheduled an appointment for early February to talk things over with the doctor and perhaps set up another sleep study.


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