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Old 09-30-2012, 11:20 PM   #1
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Question Cycles of Tongue Cracking/Fissure With Lethargy

I'm a male, mid-30s and have been struggling with 'debilitating' lethargy for over a year now. I've struggled with poor energy for several years, but a year ago began to experience these debilitating episodes which last several days and reoccur every 1.5 to 5 weeks. I've seen a dozen doctors and nobody has been able to identify the root cause of this cyclical issue. Has anyone else out there had severe lethargy in association with a cracked tongue? Both of which come and go together? The crack is vertical, about 1.5 inches in length, 2-3mm deep, and is on the right side where Chinese medicine would suggest liver issues. About the only thing I can do when these issues occur is sleep. It typically takes 2-3 days of sleeping 14-16 hours before I can function. Although I feel better in between episodes, I never do feel normal and survive on high doses of caffeine. (Prior to these issues I'd been caffeine free for nearly 2 years with no issues.)

Other symptoms that appear to be unrelated to the cyclical nature of the lethargy and tongue fissures include lower back pain, neck pain, tingling in right arm and hand, urinary issues that come and go. I've previously had some issues with dizziness and seeing wavy light patterns that many migraine sufferers report although I've never had a migraine.

I've read about many cases of geographic tongue and fissures, but never have I seen anyone that experiences repeat episodes with lethargy. The tongue fissure is rarely accommodated with slight pain and does heal between episodes. When I see a new crack beginning to form on my tongue, I know to expect an episode within 2-3 days.

I also struggle with Hypothyroidism and low testosterone (Hypogonadism?).

I'm currently working with a Neurologist to identify any potential neurological issues.

Hopefully there is someone out there that has experienced this before and can shed some light on this. Or someone that is going through similar experiences that I can team up with to get some answers!

Thanks all!

Last edited by Kritler; 09-30-2012 at 11:24 PM.

 
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Old 09-30-2012, 11:47 PM   #2
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Re: Cycles of Tongue Cracking/Fissure With Lethargy

Your symptoms are suggestive of a rheumatological problem. The combination of tongue fissures, arthritis like symptoms, some urinary problems and episodes of severe fatigue with neurological symptoms could be one of a few things but the one that comes to mind most is possible Behcet's syndrome. It is rare, but often affects young males. Unfortunately, there is no good test to run for it. It is a diagnosis more of exclusion, ie., excluding other similar conditions and following the clinical course, treating symptoms until it becomes clear. It is a combination of rheum and neuro problem, but many Drs are not familiar with it. I would research it and try to find a Dr in your area who is knowlegable about it. You might mention it to the neurologist you are seeing. Some clues may show up on the tests done to rule out other rheum conditions, like elevated sedimentation rate or CRP during an episode. It is best to get testing done during a flare and when you can show your Dr your tongue. Since this is rare, you may have to be a detective and see what fits with your situation. Vit B deficiencies can cause tongue problems, so that can be checked for on blood tests too. Let us know what transpires!

 
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Old 09-30-2012, 11:57 PM   #3
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Re: Cycles of Tongue Cracking/Fissure With Lethargy

Just a quick addition, do you have any tests results from your Drs visits, and are you on thyroid replacement with adequate doses to combat the fatigue? On testosterone replacement? These affect your baseline, but do not cause these episodes. Reiter's syndrome is another condition you might want to research. Any visual or eye problem episodes? Those can happen in both of these syndromes.

 
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Old 10-01-2012, 12:14 AM   #4
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Re: Cycles of Tongue Cracking/Fissure With Lethargy

Hi Ladybud! Wow, thanks for the quick replies. That's great. So my sedrate was normal. Rhemetoid factor was <5IU/ML; so nothing there. I'm on Armour Thyroid for the Hashimoto's and my T3s/T4s/ReverseT3s are looking good. I also started Testosterone injections a couple of months ago after compounded cream showed to be inadequate. My T levels were below 200. I'm also on an aromatase inhibitor (Arimidex 1mg/week) as of last Saturday since my estrogen levels were high. Urologist who prescribed it couldn't find any physical sources for the urinary issues.

I haven't had any issues with my eyes and actually tested 20/10 back in grade school. However, I do have an appointment with an Ophthalmologist on Tuesday at the advice of my Neurologist and I have an MRI of my brain/spine scheduled for Thursday. An MRI from a year and a half ago showed some brain lesions that, at the time, my neurologist had no concerns. The MRI was done back when I had the short period of dizziness.

I had asked my Urologist about Reiter's syndrome or reactive arthritis and he said it likely wouldn't be the case since I definitely don't have any STDs. Typically Reiter's/reactive arthritis is accommodated by Chlamydia or Gonorrhea which I definitely don't have as I've been married and faithful for a decade. I'd considered Behcet's at one point too, but I'm missing many of the classic symptoms there. Previous deficiency studies did detect low Bs back in March, so I've been on a complex b ever since which hasn't helped matters. I also drink a ton of Redbull just to function which of course is packed with the Bs.

Keep em comin' though! I'm all ears and desperate to get to the bottom of this so I can move on with my life!

Last edited by Kritler; 10-01-2012 at 12:20 AM.

 
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Old 10-01-2012, 08:11 AM   #5
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Re: Cycles of Tongue Cracking/Fissure With Lethargy

Reiters can also follow a bout of infectious diarrhea-like salmonella, shigella, and traveler's diarrhea. Behcets often presents one symptom at a time over a long period, which adds to the difficulty of diagnosing a string of seemingly unrelated events separated sometimes by years. I assume whoever checked your RA factor checked an ANA for lupus? Sometimes that is overlooked since it is more often seen in women, at a 9:1 ratio to males. The urological symptoms are inflammatory, not infectious, so nothing usually shows upon tests unless you have a cystoscopy (scope into bladder) to see the inflammation.

 
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Old 10-01-2012, 11:16 AM   #6
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Re: Cycles of Tongue Cracking/Fissure With Lethargy

Great questions. Yes, one of my docs did an ANA for Lupus about a month ago and I'm ok there. Also checked for parasites and that came back clean as well.

So most of my symptoms can align with a handful of diagnoses out there. Lupus, Reiter's, MS, Parkinson's. Perhaps chronic fatigue with fibromyalgia. And of course the sooner I have a diagnosis, the sooner I can treat the issue more effectively. HOWEVER.... What I don't understand is why my tongue fissures align with these episodes of lethargy. Every doctor I've talked to has been very intrigued by this finding. However, about the only thing anyone has said is, "Huh. Very interesting." This suggests to me they've never seen this before and that I may be up against something that is so rare, it's not even identified yet. Alternatively, it could just be a much more unique way that my body is responding to a more common disease.

My primary purpose for posting here is to assist in understanding all possible diagnoses and learn of other's similar experiences. As well as to help others that may not be as far along as myself. However, I'm very interested in getting to the bottom of this tongue thing. I'm beginning to think maybe I should just shrug it off, as the doctors do, and be thankful that I have an indicator gauge that warns me for periods of lethargy. It's great to know that I'll be in an episode within 2-3 days from the time a fissure begins to form. However, I sure would like to know someone else out there that has experienced the same symptom. As it sure seems this specific symptom could be a tale-tale sign of something more definitive.

Thanks again ladybud!

 
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Old 10-01-2012, 01:23 PM   #7
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Re: Cycles of Tongue Cracking/Fissure With Lethargy

I know people who get mouth or nasal ulcers at the beginning of each flare, and this is not too far off from that. Autoimmune diseases have remissions and exaccerbations, and exaccerbations usually include extreme fatigue/lethargy along with other symptoms. You might consider looking for a chat board for Behcet's and pose this question to others. Inflammation in the mouth can manifest in different ways, and I think this is just your way of the flares coming on. My Father had Behcet's, and he had geographic tongue and fissures in his tongue at times. So I'm sure there are others out there who experience this and may have found something to help it. Let us know what you find!

 
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Old 10-01-2012, 01:29 PM   #8
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Re: Cycles of Tongue Cracking/Fissure With Lethargy

As you probably know, when a person has one AI disease, there are often others. So since Hashimoto's is AI, it would be logical to pursue another AI cause for these episodes.

 
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Old 10-03-2012, 03:21 PM   #9
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Re: Cycles of Tongue Cracking/Fissure With Lethargy

FYI...I had an appointment with an Ophthalmologist yesterday. Vision was 20/20 and they were unable to detect any issues. My brain/spine MRI is tomorrow and my followup with the Neurologist is next week. I also have an appointment scheduled with a Rheumatologist the week after next once I have my results back from the MRI/Neuro. Hopefully I'll learn something soon! I'm still very interested if there's anyone out there that is willing to share a similar story or provide some insight! Thanks!

 
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Old 10-04-2012, 07:59 PM   #10
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Re: Cycles of Tongue Cracking/Fissure With Lethargy

Ok, had my MRIs this morning and had results back this afternoon. So doesn't appear to be MS thank God. But there were notes that I have artritis and stenosis in different areas of my spine. My grandmother struggled with spinal stenosis for several years before she died earlier this year but I didn't expect to begin battling this in my 30s. So this is good information to have, but my new questions are....

1. What is causing spinal stenosis and arthritis at such a young age?!
2. Are my bouts of lethargy/tongue/episodes related to the arthritis?
3. How does this all tie to a potential auto-immune disease?

I'll be seeing my Neurologist here next week to ask some of these questions regarding my MRI and will see a Rheumatologist the following week to determine next steps. But I'm still concerned I'm up against something that is difficult to diagnose and treat. I've found very little online to suggest any type of arthritis or spinal stenosis will put someone in bed for 14-16 hours a day for 2-5 days!

More to come.... Thoughts anyone?

 
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Old 10-04-2012, 08:18 PM   #11
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Re: Cycles of Tongue Cracking/Fissure With Lethargy

The autoimmune diseases like ankylosing spondylitis (spinal arthritis), Behcet's, Reiter's, etc. all involve inflammation in the joints and elsewhere. The inflammation is what causes the fatigue. Inflammation is a very complex process that involves production of chemicals caused cytokines, that make people feel sick, fatigued, feverish, achey and just pooped. These diseases tend to have remissions and exaccerbations, and yes, the ill feeling, tongue symptoms and arthritis are all connected in these diseases. Once the problem is identified, there will be treatments available to control the symptoms, disease progression (arthritis), and reduce or prevent flares (exacc.) Your rheumatologist will hopefully get to the bottom of this quickly for you. You are asking good questions, and understanding what is happening is very important.

 
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