Appointment with specialist next week - need advice

Hello,

I'm new to this forum and I'm glad I found it. My family doctor suspects fibro but I'm finally seeing a specialist next week (after months of waiting) and could use any advice or suggestions I can get so as to make the appointment as profitable as possible.

I'm 20 years old and have been experiencing these symptoms for about two years, possibly more. My family has a history of MS, liver and heart disease, although liver disease has been ruled out. I've had thorough blood tests done and all came back normal (negative for lupus, thyroid, stis/stds, celiacs, Lyme and vitamin deficiencies etc.,) so my family doctor is pretty stumped.

I remember experiencing fatigue for years, but only really recognized that something was not right when my hair started falling out and I started developing mouth sores (clear bumps that often burst into a painful sore, larger shallow red patches, and lines) and a chronic yeast infection (which to this day has still not gone away). Since, I've additionally been experiencing constant fatigue, muscle pain (esp. in back and knees), weakness, shooting "electric shock" pains (all over my body but esp. in back and knees), I twitch a lot, muscle stiffness, dizziness and coming close to fainting always accompanied with a headache and nausea (which gets worse with standing or physical activity), brain fog, tension headaches at back of head, shakiness (almost like I'm anxious, even though I'm not), memory/concentration problems, eye pain and blurriness (I think from dryness), a feeling of tightness in my lower chest around to my back (a deep throbbing pain), and occasional D (esp. but not always after lactose, coffee, soy, cheese), and cysts on my gums/lips and scalp (not sure if that's related).

I'm going to press to have Sjogren's looked into (because of my dry eyes) and my thyroid but besides that I have no idea.

Does this look familiar to anyone? Does anyone have any suggestions on what else I should bring up to my doctor?


Thanks for reading my post. Any replies will be very much appreciated.

Post Edited (tara_) : 6/16/2011 6:08:25 PM (GMT-6)

Welcome,

I was going to say to print off what you posted. Robin kind of beat me to it. It is good to have a list of any questions that you may have too. We always forget things. I wish you the best of luck. I hope that this specialist can help you.

Try to stay relaxed. Have you had blood sugars checked as you said that you were having yeast infections. That is a symptom of diabetes. Not saying you have it, but make sure you get that checked with a fasting blood draw.

Best wishes to you.

Hugs, Karen

As I read your post, I thought that your symptoms sounded quite different from fibromyalgia. You might have it, too, but the hair falling out, etc., seem more like a disease than a syndrome. I agree with the idea of asking about behcets--it's not something I'm familiar with, but at least it's a place to start.

Good luck.

Many of yr symptoms are classic fibro, but something else is going on also....don't let them throw you into the fibro basket until other symptoms are explained or diagnosed. I was dxed w/ fibro 7 years ago, now they say it might be something else.

As all of the rest said, research, write down symptoms, take pix. When my husband was dxd w/ cancer, somebody else always went with him to help with this stuff. Good luck and let us know

Maggie

hi tara!
i am 21 years old and experiencing a similar situation as yourself- still undiagnosed with the possibility of fibromyalgia. i have had similar tests done that were negative, with the exception of a few of my MRIs which showed small abnormalties. if you havent already had an mri or ct scan, i would recommend requesting one of them from your specialists. one question i have for you is are your symptoms always present? do they wax and wane or are they getting progressively worse? i feel as if my symptoms have been getting worse in general, but once and awhile i have good times of the day- is this typical of fibromyalgia?
i have seen a neurologist, who noted that my reflexes are diminished, but didnt say much other than that. i have appointments with an allergist, rheumatologist, and endocrinologist in july. i know that i am going to ask to be re-tested for lymes disease. i had a tick bite this past summer and have heard that the tests are unreliable- i feel like our symptoms are so similar to the disease. also ask to be checked for autoimmune thyroid. that can rule out hashimotos i think, mine was negative.
i am starting to get concerned that my doctor is labeling my symptoms as anxiety because she is frustrated that i have so many symptoms and yet so many negative test results. have you got that feeling with your doctor, and how do you make sure they take you seriously? i am sure that my symptoms are not all anxiety, but i too recognize that my other symptoms cause me to get anxious once and awhile.
is there anything that you have heard about or have been tested for that you would highly recommend for me? again, i feel like we have very similar symptoms and i hope we can both figure everything out soon!

Thank you all so much for your replies. They helped tremendously. I realize that some of my symptoms are not typical for fibro which is why I was sceptical with that diagnosis in the first place. It's a good start but I plan on pursuing doctor's until I have a definite answer.

@crazykitty thanks for the great advice. I'm thinking of either printing out a list of my symptoms or at least memorizing exactly what I want to say (lol!). I have so many symptoms (and small issues that could or could not be related) that I feel like doctors often get overwhelmed. I have been writing a symptom journal so maybe bringing a summary of that will be of help.

@gettingby thank you for your advice. I have had my blood sugar levels checked multiple times and they are always in the normal range.

@beachgirl Thank you so much for taking the time to reply. I'm not familiar with Behect's at all, but after doing some research a lot of the symptoms do make tones of sense. I am definitely going to ask the specialist about it.

@Femangel Good luck with your appointment, hopefully we'll both get the answers we are looking for :)

@teeners thanks for your reply! Sometimes I feel like I'm the only one my age going through something like this. My symptoms do come and go, sometimes getting much worse and sometimes going away all together for a few rare but blissful days at a time. though I'm not sure if it's characteristic of fibro or not... I have not had an MRI or a CT scan yet but refuse to leave the specialist's office this week until he orders me one lol I really do understand your concern about your symptoms being written off as depression or anxiety. The last time I saw my doctor he said "it looks like either depression or fibro" because my blood tests come back normal, and I almost wanted to cry! I realize that when I'm stressed my body is effected but these physical symptoms are very much real and very much a product of something other then my mental state. I have one piece of advice for you: when I first started getting symptoms and doctors didn't take me seriously, I went into denial mode... and for two unhappy years I've suffered with all these health issues without dealing with them. Now the symptoms have gotten so bad that I can't function like a normal 21 year old anymore and I regret, so much, not standing my ground with the doctors I saw two years ago. who knows, all this could have been resolved by now. So please, you know your body more than anyone else, and if you feel like there is something wrong, don't let anyone write you off and be persistent until you get a satisfying diagnosis. You deserve a diagnosis so you can start the healing process. As related diseases, my symptoms are a lot of Chron's, Celiacs, Lyme, MS (more the neurological stuff), Lupus, and also beceht's that someone mentioned in this thread earlier, so I'd suggest getting testing for any of those if you haven't been already. All the best in your search and since we have similar symptoms, let me know if you have any success :)

@Sherrine Thank you for your response. I have not been tested for MS but will press the specialist to look for that since my mom has it. I seem to have some of the symptoms of MS (eye problems, shooting pain, twitching, voice issues, acid reflux) but a lot of my symptoms are nothing like MS at all. Also, I'll look into the fibro 101 thread, thanks again!

Post Edited (tara_) : 6/19/2011 11:38:48 AM (GMT-6)