Discussions By Condition: I cannot get a diagnosis.

lack of sweating, neurogenic bladder, etc

Posted In: I cannot get a diagnosis. 5 Replies
  • Posted By: rinsley
  • June 29, 2008
  • 07:11 PM

I am 33 and have been seen by a Neurologist for 7 years due to symptoms consistent with MS. I do not have MS. I have numbness, tingling, fatigue, heat sensitivity, hyper reflexes, muscle spasms, and was diagnosed this past summer with a Neurogenic bladder (due to frequency (20-30x per day) mild incontinence, and hesitation). A urodynamic study showed a Neurogenic bladder. I was sent to a MS specialist who still follows me but I do not have MS. MRI's are clean, Spinal tap, clean.

A few months back I developed an indentation in my upper hip area that produces pain...it looks like a dent. Now, in recent weeks, it hurts.

I have another symptom that I never really thought about until my boyfriend told me to share. I sweat very little....I mean very little. When I get over heated my face turns red, my temp goes up and I feel very weak. I exercise a great deal and still no sweat - just a tiny bit under my long hair.

Any ideas on what direction to go? Could all these symptoms be related.....

Please help....


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5 Replies:

  • you've been seen x 7 years, and you didn't say, but MRI's and CT's OK?do you have any MRI's of your spine (neck, thorax, lumbar?) the numbness and tingling are where??you don't sweat, but after 20-30x of urinating, do you drink enough water to replenish the loses? have you been on any MS medications for your symptoms.are your symptoms progressive?are your symptoms relapsing?do you have any visual problems?you may not have any MS, but there are a ton of diagnosis that are related to spinal chord. more information may be needed. if you can share some, it may help.
    Anonymous 42789 Replies Flag this Response
  • Some possibilities, and I'm sorry as they're rather scary. Parkinson'sShy-Drager SyndromeADHESIVE ARACHNOIDITIS SYNDROME (sorry-- in caps because I didn't want to misspell it & cut and pasted from a document)
    aquila 1263 Replies Flag this Response
  • Parser fellow- in response to your questions...I have had MRI's(brain and all of my spine), a spinal tap, tons of labs, Ct scan(brain/spine)- all were normal.Numbness and tingling is in my left arm and hand, past eye pain in left eye, now twitching in left eye which has been non stop for 3 1/2 weeks now, muscle weakness in my right leg, red eye on the left, urination frequency , hesitation and incontinence...at 33 - not so great!! ;)My symptoms are much worse in the heat and are cyclic.My reduced sweating as been present since I was a kid. I was and still am very athletic - when not clumsy ;)I eat very healthy and drink plenty of water.My frequent urination does not produce a lot of urine ...almost like a urinary infection but without the pain and lack of infection. My urologist says it is 100% a neurological cause for the bladder problem- most frequently, MS. However, I do not have a MS diagnosis and that does not explain the lack of sweating.Something is not right. It is not debilitating at this point(except the fatigue I had last summer). I do have some slight memory things- when in a "episode" I have some poor name recall or word recall. Doctors have ruled out Lupus, spinal cord injury, Lyme's disease, Migraines, strokes, HIV, etc...They have not ruled out MS but have not ruled it in either-thus why I am followed by an MS specialist. My concern is that I do not want to be peg holed with MS when I have other symptoms that do not fit with MS - the indentation in my hip area-very unattractive and it can be seen through clothes that are made of thin material, and the severe reduced sweating. Last night I ran on the treadmill for 15 minutes and I feel like my head is going to explode. My face gets all red- I am fair skinned- a redhead. My temperature goes up -or I fell like it does. but very little sweat- a little drop under my hair, a drop in the arm pits ..more clammy feeling that sweat drops- no glistening in any area that most people sweat. My boyfriend used to joke early in our relationship that I did not work out hard enough to break a sweat - until he worked ourt with me. He sees that I work out very hard..he will be drenched and I just look like a clammy tomato.Any further help would be appreciated!!R
    rinsley 1 Replies Flag this Response
  • Have a neurologist or Metabolic geneticist give you a dna test for fabry disease. Does your family have any history of kidney disease? Especially in their 30's, or early death due to cardiac/stroke in their 30's or 40's or 50's for females.....The test needs to be a blood test for DNA as you are a female. EMory University, MT Sinai in NY and many other labs are familiar with this test. You can google Fabry Disease or go to fabrycommunity.org or fabrydisease.org for more information.Fabry disease causes many of the symptoms you mentioned and does have treatment. A DNA test is necessary in females to give a true diagnosis. Fabry disease means your body is missing an enzyme that is necessary for your metabolic system to work properly.
    Anonymous 42789 Replies
    • December 3, 2008
    • 05:48 PM
    • 0
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  • I too have suffered from lack of sweating pretty much my entire life and I'm 53. As a child, I'd turn red, throw up and pass out (heat stroke) when in the sun long. As a young adult, I'd avoid the sun and hot places, but would get pounding headaches and dizzy even in the shade because I couldn't cool down. Sometimes people think it's remarkable that I can wear my shoes with no socks day after day and take them off and there is no foot odor, my clothing has no smell other than what I put on it due to lack of perspiration so I can often wear a blouse several times before having to launder it. While this might seem great to some people, it has forced me to have to live indoors mostly, requires that I have control over the thermostat in my office, home, etc...and of course due to my age, most just assume it's menopause...but it's been a life-long problem. MAYBE, I can shed some light on this for some folks with the same issue as "diseases" in my life have progressed and I've learned things about myself. When I was 28 I was diagnosed with a prolactinoma (pituitary tumor). I have complete "Metabolic Syndrome Disease" (was polycystic ovaries, fibrous breasts with many "cysts", diabetes type 2, hypothyroidism, etc). I also suspect that this means I have hypothalmic disease although that hasn't been diagnosed yet. ANOTHER ISSUE is that I DO HAVE Ehlers Danlos Syndrome (multiple joint dislocations - general type). It seems EDS also has it's own strange list of symptoms and many report being either heat or cold intolerant but not sure about the lack of sweating which I too suffer from. I can't say I have any particular bladder issues other than frequency but imagine that comes with being diabetic...having to get up a couple times a night generally. Even though on average, my body temp reads normal...I always feel too warm. I have even suffered frostbite on a couple of toes because I didn't feel cold when out in extreme cold and consequently wasn't wearing the proper clothing. I do not yet have any diabetic-related neuropathy. My conclusion would be most likely a hypothalmus disease or disorder (in my case) compounded by the Ehlers Danlos Syndrome which is a connective tissue disorder caused by a defect in the collagen gene (from what I understand). There is no cure, also from what I am told. I have had to learn to treat symptoms and live the best I can with what I am. Sometimes, it's really not easy. Especially the heat. Family and friends have a hard time understanding why I can't participate in functions if it's over 72 degree's max outside and there's no shade for me to hide in. It makes people in my home uncomfortable because I either keep windows open year round (even when it's snowing), or I have the air conditioning on year round. Even in the winter, I only use a sheet to cover myself up. Oh, and lastly, I am also as of age 25 allergic to the sun...I break out in hives if I go into sunlight. If anyone else has similar symptoms, espcially associated with EDS, I'd be interested in knowing. Thank you.
    ayleeann 6 Replies Flag this Response
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