Discussions By Condition: I cannot get a diagnosis.

Tingling, Fogginess, Numbness and Fatigue For 18 Months

Posted In: I cannot get a diagnosis. 4 Replies
  • Posted By: TheTaoOfRoz81
  • November 29, 2010
  • 08:54 PM

For starters, I'm a 29-year old male, about 5'9'', 160 lbs., whom exercises regularly and has a decent diet. I don't smoke, use any illegal substances, but do drink occasionally (once ever 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.

My doctors have tried to place me on neurontin and klonopin. Neurontin had no effect on me, positive or negative, so I was weened off of that. I was a mess on klonopin, basically feeling like a zombie all day and feeling more drugged than I had in quite some time, so I only lasted about three days on that before being taken off the medication.

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 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 have attempted to discover causes and/or trends with this condition, but that’s been a difficult task. It began 3-4 days after a week long venture in Omaha, where I took part in my senior class’ 10-year reunion. This is why I figured I was just overly tired at first, but that obviously wasn’t the case. I also felt the symptoms increase in intensity after another trip and flight, just the day after I landed back in Columbus to come home. However, as I’ve traveled since that point and haven’t felt such ill effects upon returning from those trips, I have a hard time believing the travel has/had anything to do with the onset of the condition or an increase in intensity of the symptoms. As I had been out-of-town with friends and family the week I was in Omaha, quite a bit of drinking (alcohol) had been done. So, I had wondered if a link could be drawn from that, so I then stopped drinking for the following 3 months and didn’t feel any different. Once the symptoms began to gradually decrease in intensity and become more scattered, I started to drink again. Stress and/or depression have been brought to my attention as possible links, but while I will not deny that I became quite depressed 2+ months following the condition’s onset, I wasn’t depressed before it started, so I have a hard time seeing it as a cause. I’ve also noticed, more times than not, that if I sleep extremely ******n a given night and have vivid dreams, I wake up feeling awful, where the symptoms will be at their peak intensity wise, before gradually decreasing in that intensity as the day progresses. Of course, this has not happened on every such occasion, but when the symptoms are intense, it does feel as if my mind/body have yet to fully awaken, so I’ve been curious if this may have anything to do with either the drugged sensation in my head or the fatigue. Other people have brought up to me the fact that I’ve undergone brain surgery, have epilepsy and TMJ and have wondered if any/all of those have contributed to my symptoms. I have a difficult time believing this, as the surgery was performed just over 7 years ago and I haven’t had any problems with full-blown seizures or with the TMJ in recent years either. One trend I may have noticed not pertaining to the potential cause deals with tremors in my hands and knees. Slight tremors were noticed by my neuromuscular specialist a few months ago, but I feel as if they may have worsened since then and tend to increase in frequency and intensity with the symptoms of my condition.

Lastly, 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. The neuromuscular specialist suggested that he talk to a neurosurgeon with regard to my case and the MRI's (AVM) in particular. They're supposed to be calling me back today with an appointment. 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, especially after being on the drug for the past 11 years. I did lose 25-30 lbs. a couple years ago and she wonders if due to that, my dosage should have been lowered. So, the plan for now is to ween me off the tegretol and place me on Lamictal, although, I'm rather pessimistic that tegretol is my problem. Thanks for taking the time to read this. Any thoughts or ideas would be greatly appreciated.

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4 Replies:

  • Where to begin...? Congratulations, you must have had the fastest diagnosis of small fiber sensory neuropathy in medical history. I've had SFN for 23 Years and am still dealing with profoundly incompetent doctors in Melbourne Australia.Since you know that date of onset, and since it appeared so quickly, you have either acute or sub-acute form of sensory neuropathy. What you might want to do is figure out what is called a Differential Diagnosis which is recommended by the Neurology Professors such as Ann Noelle Poncelet, Burns, Fink and others. The Differerential Diagnosis works to differentiate the specific type of small fibre sensory neoropathy amongst a plethora of SFN diseases.
    John Day 3 Replies
    • December 10, 2010
    • 06:41 AM
    • 0
    Flag this Response
  • For starters, I'm a 29-year old male, about 5'9'', 160 lbs., whom exercises regularly and has a decent diet. I don't smoke, use any illegal substances, but do drink occasionally (once ever 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. My doctors have tried to place me on neurontin and klonopin. Neurontin had no effect on me, positive or negative, so I was weened off of that. I was a mess on klonopin, basically feeling like a zombie all day and feeling more drugged than I had in quite some time, so I only lasted about three days on that before being taken off the medication. 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 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 have attempted to discover causes and/or trends with this condition, but that’s been a difficult task. It began 3-4 days after a week long venture in Omaha, where I took part in my senior class’ 10-year reunion. This is why I figured I was just overly tired at first, but that obviously wasn’t the case. I also felt the symptoms increase in intensity after another trip and flight, just the day after I landed back in Columbus to come home. However, as I’ve traveled since that point and haven’t felt such ill effects upon returning from those trips, I have a hard time believing the travel has/had anything to do with the onset of the condition or an increase in intensity of the symptoms. As I had been out-of-town with friends and family the week I was in Omaha, quite a bit of drinking (alcohol) had been done. So, I had wondered if a link could be drawn from that, so I then stopped drinking for the following 3 months and didn’t feel any different. Once the symptoms began to gradually decrease in intensity and become more scattered, I started to drink again. Stress and/or depression have been brought to my attention as possible links, but while I will not deny that I became quite depressed 2+ months following the condition’s onset, I wasn’t depressed before it started, so I have a hard time seeing it as a cause. I’ve also noticed, more times than not, that if I sleep extremely ******n a given night and have vivid dreams, I wake up feeling awful, where the symptoms will be at their peak intensity wise, before gradually decreasing in that intensity as the day progresses. Of course, this has not happened on every such occasion, but when the symptoms are intense, it does feel as if my mind/body have yet to fully awaken, so I’ve been curious if this may have anything to do with either the drugged sensation in my head or the fatigue. Other people have brought up to me the fact that I’ve undergone brain surgery, have epilepsy and TMJ and have wondered if any/all of those have contributed to my symptoms. I have a difficult time believing this, as the surgery was performed just over 7 years ago and I haven’t had any problems with full-blown seizures or with the TMJ in recent years either. One trend I may have noticed not pertaining to the potential cause deals with tremors in my hands and knees. Slight tremors were noticed by my neuromuscular specialist a few months ago, but I feel as if they may have worsened since then and tend to increase in frequency and intensity with the symptoms of my condition. Lastly, 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. The neuromuscular specialist suggested that he talk to a neurosurgeon with regard to my case and the MRI's (AVM) in particular. They're supposed to be calling me back today with an appointment. 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, especially after being on the drug for the past 11 years. I did lose 25-30 lbs. a couple years ago and she wonders if due to that, my dosage should have been lowered. So, the plan for now is to ween me off the tegretol and place me on Lamictal, although, I'm rather pessimistic that tegretol is my problem. Thanks for taking the time to read this. Any thoughts or ideas would be greatly appreciated. Hi symptoms sound similar to B12 deficiency - one clue is if the tingling and numbness is bilateral, that is both sides are affected, doesn't have to be 'equal' just both sides... Read these threads, there is a wonderful protocol available that helps with this deficiency and the ensuing mitochondrial dysfunction that occurs, resulting in foggy brain, neurological issues, and fatigue. A big clue to me that this is the issue is the post exhertional malaise that you have mentioned - that is worsening of symptoms after any exhertion. What counts as exhertion will vary from person to person. Check it out, it helped me and many others tremendously, B12 deficiency is very underdiagnosed. Also VERY important what types of B12 you take - cyanocobolamin (found in common drug store versions will make you worse), you need methylcobalamin and adenosylcobalamin to start making things right, brands can be important here so read the advice of those who have been through this themselves.. B12 discussion thread (read but do not post here please): http://forums.wrongdiagnosis.com/showthread.php?t=9948&page=1087 Active B12 basics thread (post questions here): http://forums.wrongdiagnosis.com/showthread.php?p=191131&posted=1#post191131 Velha
    velha508 321 Replies
    • December 10, 2010
    • 06:44 PM
    • 0
    Flag this Response
  • It may well be a B12 deficiency but he has an unusual pattern insofar as having a remitting-relapsing course. It is a lost cause to approach small fiber neuropathy via the causal route. It may be Toxic, Inherited, Metabolic, Immune-mediated etc. There are 400 different causal routes that anyone could pursue. There are 39 mutant genes alone that have been identified in Hereditary Sensory Neuropathy in addition to even more Hereditary Sensory Neuropathies for which the gene has not yet been identified. Looking for the cause is a needle-in-a-field-of-haystacks deadend. The first step is to write down the Differential Diagnosis. I have attached a table that maps out a Differential Diagnosis. Obviously you need to circle the symptoms that affect you. (See attachment.) Now, with the Differential Diagnosis, you can very quickly differentiate between, say, Guillane-Barre Syndrome and CIDP or Marie Charcot Tooth Disease and Dejerine-Sottas disease.
    John Day 3 Replies
    • December 10, 2010
    • 11:25 PM
    • 0
    Flag this Response
  • If I were you, I'd have someone check for anemia and B12 Deficiency. I've been struggling for almost 26 years. I would be so fatigued that I couldn't climb stairs. Doctors would order all sorts of tests which would come back fine, then I'd start to feel better so I wouldn't pursue any future tests. In the last year, my symptoms have been nearly constant and I've pushed the doctor hard for some help. They've "found" sleep apnea, acid reflux, high blood pressure along with the ever present chronic fatigue. Last week, after ticking my doctor off and getting pretty upset with him, he checked and found that I have anemia. He didn't want to treat until he found what type it was, then the B12 deficiency was discovered. I've gotten one B12 shot, he still isn't being as agressive as I'd like, but I feel that we are finally moving in the right direction. Whatever you do, DON'T think it's in your head. That's what they had me believing for years. I was treated for depression.... when you feel so bad for so long, who wouldn't be depressed.... but the meds did nothing but make me even more foggy. I've been tested for things that I never imaged and like you, was always pretty sure that they weren't going to find anything. I do believe that this is the answer that I've been looking for. Hang in there and I hope you find a solution soon. Trudie
    Anonymous 42789 Replies Flag this Response
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