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Tingling, Fogginess, Numbness and Fatigue For 18 Months
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 May 31, 2009. It started with me just feeling more fatigued than usual after sleeping 12 consecutive hours. 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.

I shared this story in another community and someone responded by stating it could be an allergy problem. Any thoughts or suggestions would be gratefully appreciated.

Gregory M Metz, MD responded:
Craig, sorry to hear about the symptoms you have been experiencing. Allergies can lead to many symptoms, primarily eye and nose itching and running or congestion but occasionally a foggy sensation and fatigue. I do not know of a mechanism by which allergy could lead to your neurologic symptoms such as numbness and tingling. Do you have any chronic abdominal symptoms such as bloating, loose stool or pain?
TheTaoOfRoz81 replied to Gregory M Metz, MD's response:
Thanks for the response. In answer to your question, no, I am not suffering from any of those abdominal symptoms you mentioned. I had a feeling this wasn't allergy related, but someone brought it to my attention that it may be a possibility, so I thought it couldn't hurt to post this and see. Thanks again.

Nikhil262 replied to TheTaoOfRoz81's response:

I have same problem since last one & half month. Initially I have B12 & vitamin D inefficiency & later i suffered from Ti-foid (Viral). Same time i have same symptom & it was less since few days & stop for 3 days. It again started from today & its same numbness as stated here. Even I have also gone thru all test like blood, Nero, MRI.. those are NIL

But yes, I have allergy about lots of food & shown during allergy test (blood report).

I have started taking care of food & restricted from the allergic food. No idea why its happening. Please share or help, if any one can..

Craig, How are you feeling now? Are you better? Please reply.

Troub72856 responded:

Comparing symptoms with others is not a good idea, The best thing for you to do is talk to your doctor and be evaluated that way. looking for an evaluation this was is not the best way to go. I know this first hand because I had the same symptoms as you described and I heard a long list of what if's and you might have this..... I was diagnosed with Chronic Panic Attacks and recently found out I do have Chronic Fibromyalgia. I would highly suggest that you seek other doctors for answers if your primary doctor has no answers to your questions and symptoms.... I wish you the best of luck and my prayers are with you......
JennC121 responded:
I know how frustrating this can be. I have been dealing with similar symptoms for the last 4 years or so. Along with the slew of tests and MRI and such, I did see an allergist, Food and environmental. I am allergic to a few foods and environmental allergies, and our dog. I do not want to get rid of our family pet, but we are at our wits end and feel that might be our next try. While I do respect opinions of others, you can not always sit around and wait for the doctors to figure out what is wrong. You know your body best. I have been through 12 doctors and more tests than I can count in the last four years. I have drastically changed my eating habits, and I am now the healthiest I have ever been, with exception of this problem. I did find a natural doctor who has done me more good than any of the other 12 doctors... We'll see how that does for me. I will keep you in my thoughts, and I hope you figure it out soon. I'll let you know how my next experiment goes! Even if it's not the same issues causing these problems for us, it is nice to have that little reminder that we are not alone.

TheTaoOfRoz81 replied to Nikhil262's response:
Hey, sorry for the delay. I hadn't checked this site for a while, because I've been feeling better for close to two years now.

There have been two times since I began feeling better in late-December of 2010 where I've felt some of the symptoms again, but they didn't last long, fortunately.

In the end, the doctors still weren't certain what happened. Their best guess is that my symptoms were prompted by a very strange virus in conjunction with some odd side-effects to an anti-seizure medication (Tegetol) I had been taking for too long potentially (10 years). When I was weened off Tegretol and then was switched to Lamictal, I slowly began feeling a waning of the symptoms and within a month or so, felt close to 100% again for the first time in a couple years.

I wish I could help, but I'm not sure what all to tell you. I underwent a great number of tests at multiple clinics in Columbus and Cleveland: EEG, EMG, Q-sart, blood work, MRI, sleep study, and I don't remember what all. I was tested for diabetes as well.

Have you learned anything new in the past couple weeks since you posted this? What are the doctors saying? If you're only seeing one doctor, it couldn't hurt to get a second and third opinion.

Well, I hope things are looking up for you and that you and the doctors can figure out what the problem is, so you can get back to feeling better. Take care.


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