Discussions By Condition: I cannot get a diagnosis.

I believe I may have Multiple Sclerosis (*please read*)

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: N_122AB
  • November 22, 2010
  • 06:38 PM

Hello everybody.

I could use some advice re: a medical problem I’ve been experiencing lately. I’ll try to make the description concise but I’d like to give a lot of background information – so *please* bear with me and read through the post.

The point is this: I believe I may have Multiple Sclerosis.

I’m a 25-year-old, white, otherwise healthy Canadian male; 6’6, 200lbs. With the exception of what I’ll describe below, the only medical conditions I’ve ever experienced are i) multiple pneumothoraces (spontaneous lung collapses – two major surgeries; no problems for over two years now); ii) external hemorrhoids (suffering from them since early adolescence – caused by straining), iii) difficulty emptying bladder and feeling an endless need to urinate (experiencing for the last three years or so), iv) never-ending lower back pain (which, I believe, exists because of my tall stature), and iv) twisted knee and hurt shoulder (sporting injuries). No known allergies. No regular medication.

On a Sunday night back in February of this year (2010), I shaved my genital area and the surrounding parts of my legs as I had been doing every week or two for the last four or five years (using an electric buzzer (e.g. for shaving heads) with no shave gel/cream/water). I had never experienced any discomfort from shaving these areas except for the fact that every so often when I’d exercise and do a lot of pacing back and forth in between exercises I’d notice that my upper, inner thighs would sting/burn as if they were rubbing against each other – this feeling ALWAYS went away an hour or two after the work-out. On Monday I went into work and was assigned a job that involves about 4-6 hours (total) of walking throughout the course of a shift. By the end of the shift I noticed that my upper, inner thighs were stinging a bit – again, as if they had rubbed against each other for an extended period of time. The discomfort went away by the time the evening rolled around. On Tuesday and Wednesday I was assigned to the same job. On Tuesday the pain had gotten much worse and the discomfort started earlier than it had the day before. By Wednesday morning I was in so much pain that I had to wrap my legs in gauze for Wednesday’s shift. After the shift I told my boss that I would be unable to do the job until this pain went away.

Ten months later – now, in November – the situation has gotten only worse.

HERE ARE THE KEY SYMPTONS:
1. Nearly never-ending burning/stinging/itching/tingling sensations in/around: entire genital area (skin above penis, skin on penis (not head), skin around testicles, skin around anus, skin on thighs surrounding genitals), underarms, and various spots all along the undersides of my arms (e.g. especially around the elbows and backsides of biceps).
2. Any type of skin-on-skin (and now more recently, skin-on-clothing) contact aggravates the burning/stinging. This is especially true of my arms; if the skin around my elbows or backs of biceps touches against other skin, burning/stinging starts nearly immediately. My legs are really bad at night. The entire areas along my legs from the top of the knees up to my hips burn/sting when I place a pillow (or anything else for that matter) in between my legs at night when I try to sleep. VERY FRUSTRATING. When I roll over onto my right side when trying to sleep, I am unable to rest my left arm along my stomach/side of torso as the burning in the left arm starts immediately.
3. Burning/stinging/itching/tingling sensations are aggravated by increases in body and/or environmental temperatures. This is the reason I have stopped working out at the gym – something which I need to do to keep up my muscle definition so as to prevent more lung collapses. About one month ago I did some sweeping at work for about 3 hours while wearing stuffy pants: the front-sides of my legs were burning like crazy. The backs of my legs essentially never bother me.
4. Holding my arms against my sides, forcing the skin on my underarms to touch other skin, causes serious burning/stinging sensations. Sometimes my underarms sting after applying deodorant.
5. The skin around my anus (especially the ‘top’ of the anus – i.e., closer to stomach, not back) gets very aggravated after sitting for extended periods of time. For instance, sitting on a forklift at work for hours on end each day ALWAYS causes me discomfort around my anus. Sitting on the truck also upsets my thighs/genital areas: I’m constantly scratching at itches and trying to separate the skin as it feels like I’m ‘sitting on’ my testicles.

HERE ARE THE TREATMENTS TRIED SO FAR:
1. I thought I might have been suffering from Bioton Syndrome as I had eaten raw egg whites once/twice per day for nearly two years (stupid, I know). For a three month period I didn’t eat any eggs or egg whites and began taking Vitamin B complex and Biotin supplements regularly. Not helpful.
2. I thought I might have been suffering from some kind of lice infestation. I washed my hair (I have a shaved head so there isn’t much hair to wash) and my genitals with anti-lice shampoo, washed and dried all my clothing on high heat, vacuumed my room furniture and carpets, and bought new bedding. Not helpful.
3. I thought I might have been suffering from some kind of STI: from December to February I was in a monogamous relationship with a woman and we regularly had unprotected sex. I’ve visited three healthy sexuality clinics since breaking up with the girlfriend back in March. The first clinic’s doctor told me there was no need to get tested after she examined me. I went back again and demanded to be tested for everything possible. I was tested for all the ‘regular’ stuff: HIV, Chlamydia, ghonneria, Syphilis, Hepatitis, etc. All results came back normal. With the exception of a small blister which formed on the inside of my thigh when this all started back on February, I have NEVER had any physical symptoms ANYWHERE in/around my genital/anus/thigh areas. Not helpful.
4. I thought I might have damaged the nerves in/around my genitals because of the way I had been treating my hemorrhoids. I have had only a few outbreaks of external hemorrhoids over the past couple of years as each time I’ve had a bowel movement I’ve then iced my anus for 10 minutes afterwards to reduce swelling. Anyways, for the last month or so I’ve stopped nearly all icing and have made an effort not to strain on the toilet. Not helpful. Given the pain throughout my entire body, I found it unlikely that the icing had caused this condition but I wanted to be sure...Not helpful.
5. I recently had blood and urine testing done wherein my family doctor requested that the clinic screen/test me for nearly everything possible. All results came back normal/within acceptable ranges. Family doctor did not notice any irregularities. Not helpful.
6. I did not shave any areas in/around my genitals for a three month period. No relieve in the pain. I’m still not shaving those areas, with the exception of the skin immediately below my stomach. Not helpful.
7. Various dermatologists have prescribed for me five/six different topical creams/ointments over the last year, many of them being situated to treating eczema/psoriasis (e.g., made up of some kind of corticosteroid (or something similar)). No relief at all. Not helpful.

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  • 8. I’ve been prescribed five different anti-depressants (or similar drugs):i. Amitritpylineà 25mg/day for 6 weeks, eventually getting up to 100mg/day. NO RESULTS. Nothing but bad side effects.ii. Lyrica à standard dose (cannot remember exactly) for 3/4 weeks. NO RESULTS. Terrible nightmares.iii. Amitritpyline (again) à 125mg/day for 4 or 5 weeks. A BIT OF RELIEF, NOT MUCH. Forced to stop because of side effects (extreme fatigue and difficulty urinating).iv. Nortriptyline à 100mg/day for 10 days. NO RESULTS. Forced to stop because of same side effects of as Amitritpyline.v. Cymbalta à 30mg/day for 1 week, 60mg/day for 3 weeks. NO RESULTS. Got impatient and gave up.9. I thought I might have been lacking vitamins/nutrients essential for proper nerve functioning and, so, for the last two or three months I’ve been taking Vitamin B Complex, Inositol Powder, Acetyl-L-Carnitine (only taking for past one month), and Lipoic Acid – all at recommended dosages based upon people with nerve pain. NO RESULTS. 10. My doctor gave me a prostate exam two weeks ago. He says there is nothing about which to be concerned – it seems normal. I asked him to check my prostate because (as mentioned above) for the last three years or so (thus, at least two years before I began experiencing this pain) I’ve constantly felt the need to urinate and sensation that I cannot empty my bladder fully, no matter how hard I squeeze. For instance, there have been many nights (not as recently thankfully) where I’ve gotten out of bed three times in ten minutes after retiring for the night because of feeling the need to pee and being unable to fall asleep until I empty my bladder. Besides a small pain on the side of my stomach that I experience maybe 5 or 10 times a year and have been experiencing since I was a kid, I never have any pain when urinating. No pain during sex either – if that matters.Based upon all this information, I am leaning more and more towards the possibility that I have Multiple Sclerosis. Obviously I would prefer not to be diagnosed with such a serious illness; but at this point I am desperate to get a proper diagnosis so that I can start treating this problem and get back my normal life!At the end of December I have an appointment scheduled to see a neurologist. In addition to what he/she may suggest, I am going to ask to have an MRI done in hopes that it’ll reveal what is wrong with me.Well, what do you guys think? What can I do at this point? Which other tests should I have done?Thank you from the bottom of my heart to those of you who will read this entire post, take it seriously, and offer me helpful responses.
    N_122AB 2 Replies
    • November 22, 2010
    • 06:38 PM
    • 0
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  • shingles can affect any area of the body, it does not always have spots, the one blister you mention could be the sign! shingles causes hot burning feeling on 'bits of the body, usually though these areas are very itchy too. i get scorching hot thigh fronts, hands,and back every night in bed and often my temperature goes up because of the discomfort. I find sleeping with a fan direced straight at me and using thin bedding (a duvet cover without the duvet!) really helps, I had one single shingle as a teen on my back and have had the burning sensation ever since. the doc just dismisses that anything is wrong but it disturbs my sleep every few hours and during the day it feels like things are crawling around inside my thighs and hands.good luck finding a diagnosis, please post if you get one,
    Anonymous 42789 Replies
    • November 23, 2010
    • 05:57 AM
    • 0
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  • dude, i have the same symptoms. I think i might have contracted herpes. you need to check with your doctor. I have been feeling like this for over a year
    Anonymous 42789 Replies Flag this Response
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