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Hi Doc, my partner has a number of 'odd' recurring symptoms, that MAY be explained by what i can see on LGS...BUT i would really appreciate your advice, as noone on NHS is vaguely interested....and he certainly has a strange collection of symptoms..
He's 35, of Nigerian descent (has had malaria - lots!), fit, healthy, vegetarian. I first found your sight by doing a 'scalp conditions' search as he has a large patch on the back of his head that is 'spongy' - ie the scalp appears to 'give' - and lumpy and ranges from 'pink'and dry looking to raging red with any number of large pus filled sores (bigger than pimples)that look like you could pull the large chunks of hair from them. the hair in this area is also much 'finer' and the scalp gets sore and itchy. 'nothing' works, although it does mysteriously seem to get 'better' on occassions and then flare up with no reason. he has various success with the itch by using all sorts of things from aqueous cream, to honey conditioner, to a leave in moisturiser - although none of them change the condition, they just increase his comfort. he has apparently tried every 'scalp specialist' treatment on the market and it makes NO difference. i also convinced him to use a topical anti-fungal on it for a couple of months which 'soothed' it, but again, didn't fix it. To me the 'flake' is not 'dandruffy' and never makes it to his clothing.
He also suffers from 'fevers' - for no apparent reason - that don't always register on a thermometer (odd, i know) but i can vouch for the fact that i can be sleeping a foot away from him and the heat is enough to wake me up. i have been trained as a nurse and must say that i would have 'guestimated' his temperature as feeling like it's in excess of 40C. Except when he's 'fevering', his hands are ALWAYS cold - they go clammy when the fevers hit. the fevers can be a couple of times a day for a couple of days and then disappear for anythign from a day or two, to a couple of weeks. The wear him out!!!!
He often wakes up with chronic aches and pains (he describes them as joint rather than muscular), and is often fatigued - both of these symptoms are notablly worse after a fever.
We had both assumed that the fevers and aches were 'malaria throwbacks', but he's always tested negative in the last 6 years and we were recently told that you can't have a malarial fever unless you've got malaria...?
We have recently come back from holidays, which is where i discovered that the aches and pains are more regular than i thought - he can only walk for an hour or so before his feet (again joints/bones by his description) become almost intolerablly painful.
To top it all off, intermittently he gets this PHENOMENAL rash. i've only seen it once this year, but it starts like 'dry spots' of skin (his skin is VERY dry - apparently an 'african thing' - but he moisturises thoroughly twice a day every day) but they are nearly perfectly round (when he only had one or two, i wondered if they may have been ring worm ~ but they weren't!) - they then progressed to 'sores' and spread across his back, around his sides and down across his stomach. they weren't like psoriasis, but they did progress to being more 'plaque-ish' in the end than anything else. the itch by all accounts is mind altering. he's always just upped the moisturisation (apparently its often in winter it happens)as once again, no doctor wants to know about them and nothing has ever worked(as with all other 'oddities' described - all they can say is 'might be stress'although one did do blood tests - including arthritis - recently which came back with nothing). i also got him 'anti fungal' creaming these - which i think was soothing, but not much else....it was a long 3ish months!!!!!!!
He is fairly relaxed about all of this, and never complains. He occassionally gets a little irritable - and thats my sign that he's not feeling so well - but fades phenomenally quickly into a mega-grouch if he's not fed regularly!! He now considers that he's been like this for years and will probably be like this forever. He does what he can (ie the moisturising) and then copes with the bits he can't control, when they happen. I hate to think that such a young, otherwise healthy, good natured man may potentially spend the rest of his life in 'not great' health for want of someone taking the time to investigate him properly....but he, understandably, is not keen on getting further knockbacks and no answers from the 'GP' medical fraternity.. you are my last hope!!!!
many thanks for your time and patience
Lou
In Reply to: Spongy Scalp posted by Lou [3636.74] on April 22, 2005 at 08:39:43:
I have had many of similiar symptoms.. and troubling they are!!!! Of course I have been tested for "everything" and the Doctor even suggested that I must be doing "something" to cause it.. well try as I could I could find nothing at all... mine is of course much worse after stress filled events.. or if I suddenly change my level of physical activity either excessive or sedinitary... ALWAYS is worse when I eat foods with modified proteins(doesnt matter if it is vegatable , soy or meat ANY modified protein ) MSG and other glutens make the skin issues aches and pains a whole lot worse..
Good luck , I am interested in anything you find out.
In Reply to: Spongy Scalp posted by Lou [3636.74] on April 22, 2005 at 08:39:43:
Hi, Lou.
This sounds like a rare and difficult to treat condition of the scalp that is commonly misdiagnosed. It is IMPOSSIBLE to treat if the diagnossis is not made! I cannot think of the name of it right now but it is a symbiotic combination of fungus AND bacteria. If you could spend a few minutes with a good, color, dermatology atlas at the medical school library you would see it and know the diagnosis.
Let us know what you learn.
Walt
In Reply to: Re: Spongy Scalp posted by Walt Stoll [93.1889] on April 23, 2005 at 07:37:53:
Well Walt and Penny
the good news is i work in a medical school - so guess where i'll be going at lunch time???!!! will let you both know what i find.
Dr Walt, does this mean you think he probably DOESN'T have LGS???? Whilst he was VERY excited at possibly having some information (and,finally, a diagnosis), we naturally don't want to hit the heavy-duty diet modification road if we don't have too....
MANY THANKS
laura
In Reply to: Re: Spongy Scalp posted by Lou [3636.74] on April 25, 2005 at 04:52:57:
Lou,
He STILL probably has LGS since people with this condition always have immune supression or overload.
Walt
In Reply to: Spongy Scalp posted by Lou [3636.74] on April 22, 2005 at 08:39:43:
Thanks for the advice re LGS Dr Walt. I've not had much luck with the Derm' atlas yet - closest so far seems to be the Tinea Capitis/Kerion but his doesn't have the defined round shape(to date, i've only managed a web search, not an actual book search). Will keep you posted on what i find - in the meantime, if you remember the name of the diagnosis you were thinking of, please let me know!!! cheers laura
In Reply to: Re: Spongy Scalp posted by Lou [3636.74] on April 26, 2005 at 08:50:34:
Thanks, Lou.
Kerion was the word I was trying to think of! If the docs are confronted with this possibility it should totally change their approach.
Let us know what you learn.
Walt
In Reply to: Re: Spongy Scalp EUREKA! Archive. posted by Walt Stoll [93.1889] on April 27, 2005 at 07:11:35:
Well Dr Walt and Penny - we are now CONVINCED this is what my partner has - unfortunately the cranky old cow of a doctor he went and saw yesterday decided, WITHOUT EVEN LOOKING AT HIS HEAD that the diagnosis of 'chronic dermatitis' that he was given 7 years ago was correct, and refused to do/give him anything except a list of shampoos to try! So, penny, persevere!! He is determined to get to the bottom of it so has made an appointment to see a different doctor on friday and has threatened to go back every week until they sort it out...... Will keep you posted! Lou
In Reply to: Re: Spongy Scalp EUREKA! Archive. posted by Lou [3636.74] on May 05, 2005 at 04:03:47:
Thanks, Lou.
Would it hurt this doc to admit that he was asleep on the day this was discussed in medical school? The monopoly protects such incompetence and actually rewards it with lots of money. In my opinion, this is one of the things that perpetuates the allopathic monopoly.
Walt
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