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Seeking a diagnosis for my mystery illness

Posted , 7 users are following.

florence1989
florence1989

Hi all,

I'm hoping someone can help me, or shine some light on a possible answer for me. I'm a 26 year old female.

For the last 3 months I've been dealing with a variety of symptoms. The main bothersome one is that my legs feel heavy and tired, as if there's no life in them. Secondly, I have lost at least half of my hair and I have had one patch of what seems to be alopecia. I have also not had a normal bowel movement for about 3 months (not normal for me), it is always like soft-serve. I have also not been able to shake off the feelings of brain fog and a lack of attention and vitality to my brain. I'm just not quite there.

I have had a cough (phlegm) for about 10 days with no other cold or flu symptoms.

My hand joints feel stiff and achy in the mornings.

I have no motivation for life, and I just feel like giving up because this has gone on so long.

I just started getting into rock-climbing this year and I'm so devastated to have to give that up because I don't have the energy anymore.

I've been to many different doctors, and none of them can tell me what it is. I've had loads of blood and stool tests which have all come back normal.

I did have the depo shot about 2 and a half months ago (big mistake), and while that may be contributing to some of my symptoms, such as the irritability and depression, I don't think it's the underlying cause.

I've been suspecting possibly Lyme disease, but the testing for it in Canada is so unreliable. I've been tested for celiac which was negative.

Any ideas??

1 like, 12 replies

12 Replies

  • ptolemy
    ptolemy florence1989

    Posted

    It could be an auto immune disease, they often tend to cause fatigue plus a variety of other symptoms. It could be something like alopecia areata for example. Did the doctors do a scalp test?
    • florence1989
      florence1989 ptolemy

      Posted

      No, that was not suggested. He did see the patch of missing hair, but then presumed it was from the depo shot (birth control injection lasting 3 months), which is quite possible.

      I'm considering asking for another thyroid test, as I hear the the tests are quite unreliable.

  • hope4cure
    hope4cure florence1989

    Posted

    Keep searching.. It took 10 years and 8 docs to finally find the source of my pain... Gallstones stuck in the bile duct of all things. I had been rushed in ER the pain mimicked a heart attack. over the years been told it was all in my head. When finally a gastrointerologist took a X-ray and said its not all in my head it's in my gallbladder. I was so relieved..

     So sometimes it worth the effort to never give up!

     

    • evelyn59775
      evelyn59775 hope4cure

      Posted

      HI Florence:

      ​I have been told that I have a large gallstone but no treatment was offered.  Lately, I have had severe pain in my lower left side which radiates around my groin area. 

      Would you please let me know what other symptoms you suffered and indicate what your treatment was?

      ​

      Eve

  • loopy_lou_71
    loopy_lou_71 florence1989

    Posted

    Hii there.

    I have had similar symptoms, I think though not a.doctor ME,used to be called yuppie flu. problem is doctors don't agree it exists. My doctor gave me anti depressants, when you find the right one that suits you it helped. I never gaained enough enery to start back at the gym.

    Also I have pernicious anemia again affects energy and I lost hair but not to leave patches. Worry willl do that,(used to be hair stylist). This test in England is blood test for b12 its not done standard here I requested it. Thyroid can be connected to it but not with me.Also I read how thyroid is diagnosed is by a range of others with it. Cant tell you much research it. A doctor on tv said cause of this range, some people could have is and cause your not in the range your classed as normal. He also said if he thought a patient of his showed sighns of this he would treat them for 2-4 weeks with thyroxin low dose.i have never been lucky enough to persuade a doc to agree for me.

    Last theory depo, if you read side affects it may be a side afffect, some of your symptoms. I always read info issued with perscriptin medicine, alot of birth control can make you have hair loss. I ve had lots of different ones since having my son and most did have hair loss as a side affect,usually its listed nt common but it is to some.

    Sillica might help hair,if nothing else is resolved. It is such a shame there are alot of people out there like us. I'm about 5 stone heavier cause icant go to the gym. Also cause people cant see nothing wrong they think its in your head or its lazyness and it isn't.

    Last thing have you been tested for type 2 diabetes.

    Falling all else have alternative medicine.

    Hope you have some luck x

    • florence1989
      florence1989 loopy_lou_71

      Posted

      Thanks so much for your input.

      I think quite possibly the majority of the hair loss could be due to the depo shot, however, my hair was already falling out before I got the shot. That's how I know the shot isn't the cause of my problems (though I wish it was).

      I did get tested for B12 yes. I'm having a naturopath have another look at my blood test results in case the doctor disregarded something important.

      You make a great point about other people assuming it's in your head because everything looks normal on the outside. Everyone says, well you look healthy! Or they'll say, yes I remember when I was worried about my health, it was all in my head. Very frustrating when people don't take you seriously.

      As for your last question, my sister has type 1 diabetes, and I used her blood sugar tester after a meal, and it was all normal.

      I'm going to look into finding a thyroid literate doctor.

      All the best to you

  • suzanbel238
    suzanbel238 florence1989

    Posted

    Hi Florence,

    It looks like these sypmtoms started right after the depo shot. What you are describing, are typical unwanted effects that can happen in some people. Is this the first time you are taking a long-lasting hormonal contraception? Consult your doctor, and maybe you need another method, such as pills, etc. Also the doctor can help you relieve some of these symptoms, that can be quite life-changing. As the affect of these shots is usually a few months, these signs should wear off by time.

    Importantly, this could be only one of several possible causes of your symptoms though. You must see a doctor to examine you further, to make sure that there are no other causes or conditions (i.e., Addison's disease, diabetes, autoimmune diseases, etc. ) that could also be leading to these symptoms. Are you taking any other medication? Any other symtpoms, like pain or numbness in limbs, any skin changes? These also could help exclue some other conditions.

    Keep in touch and let us know how you are doing.

    • florence1989
      florence1989 suzanbel238

      Posted

      Hi Suzanbel, thanks so much. Just having responsess on here are really lifting my spirits.

      I had the depo shot after I'd been experiencing symptoms already (though I wish I could blame it all on the depo). I don't doubt that the depo has aggravated my symptoms or created new ones though. I've been on the pill before for 7 years but came off it because I wanted to be natural again. I got the depo shot on a spur of the moment thing; the doctor practically forced it on me and didn't tell me any of the possible side effects. I'm now almost into week 3 of a period (uurrghhhh)

      I'm not taking any other medications. Before the symptoms got bad (the last few weeks) I was doing lots of exercise and eating normally. My Mum has Addisons disease, which I've told the doctor. All the tests have been done, as he also suspected an autoimmune disease, but everything was normal. I have 3 separate appointments coming up with different health professionals, so I'll let you know the outcome.

      Thanks again

      .

    • loopy_lou_71
      loopy_lou_71 florence1989

      Posted

      Hi again, I don't.know how health care is in Canada. Here in the UK we have nhs or we can go private. We also can have blood tests though health shops gp or other avenues like bupa,if you search I'm sure u will find somme one to do what yo want.

      As a women hair loss is the worst thing to have I know. Dint tie hair back tightly as this can cause stress alopicia. Look u have people replying to u, u r not alone. We may all have diff dad rent things but tie a knot in the end of it as not everyone gets an answer..the energy problem got me the worst. I tried so hard to be fit and slim now I'm the opposite.

      If I had spare cash I would be tested and investigated. The doctor then has more time for you as they are relaxed not havin to c people every 10 mins.

      I hope people like us the odd ball get the goal and get a name for an illness that has disabled us from the keeping fit and healthy like we have been prior to this.

      Good look 2 eveyone on here that cant find what's wrong, we.will get there in the end.

  • will24
    will24 florence1989

    Posted

    I suspect a posb muscle problem, i would have your doctor check your electrolites

    ( potassium, magnesium, calcium), your ast, alt and ck. you should also have a reflex test done on your legs and a emg.

    your symptoms sound a little like mine and my potassium and alt are always elavted and my emg and reflex test are abnormal.

    • florence1989
      florence1989 will24

      Posted

      Thanks for your comment Will. I just took a look at my previous blood tests, and I was tested for the electrolytes (all normal apparently). I didn't have a reflex test, and I'm not sure what an emg is.

      Did you find an answer to what your issue was/is?

    • will24
      will24 florence1989

      Posted

      not yet, my emg showed sharp positive waves suggestive of a myopathy, the neurogist thinks its hyperkalemic perioidic paralysis and is sending me to a specil als univeristy for dignosising muscular problems, been waiting 4 months to get in though already sad.

      an emg is kinda cool, they take small needles and stick them into different muscles then have you flex and relax them and the needles are hooked up to a computer so different info is displayed on the computer for the neuro to read.

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