Seeing a Neurologist

[stayhomemommyandwife]

Hi. I have posted before, and it was recommended I follow-up with a neurologist. Problem is, even though my insurance allows me to self-refer, the only two neurologists in my area don't allow it. They want me to be referred from a primary, but my primary isn't taking me serious. In the meantime, I am scared and my symptoms are progressively getting worse. Do you have any suggestions for me, please?

Here's my orginial post:
I'm a 38 year old female. I'm a wife and stay-home-mom to one 4-year-old and have very little stress. The past few weeks, I keep getting these episodes of burning and tingling, and in some cases, pain on the entire left side of my body, including my face (not my tongue, however) and down my left arm and left leg. I do not have a loss of strength, or really any numbness, just the extreme burning and pain. I do also get a headache with this, which feel hot and, at times, lightening-like. I also get dizziness and occasional blurriness in the left eye. I have been to the ER and seen my primary. I've had heart echo, stress test, and heart cath--all negative for any troubles. I've had cardiac enzymes (multiple times) and other bloodwork. All fine. I've had CT of chest, abdomen, head (WITHOUT contrast on the head) and had some sort of lung scan to check for pulmonary embolism--again, all negative. My choiropractor did a bone scan with contrast and found the beginning of osteoarthritis but didn't think it was affecting me yet. Not sure why he said that, but that is what he said. Anyway, I am scared and have no idea what is wrong with me and since the docs have done all these tests, they are now blowing me off and treating me like I'm crazy. Any ideas or suggestions would be of help to me. Thank you!  

[deebrown30]

have you researched Lyme disease?  If not I would recommend that you do!!

[deebrown30]

WOW!!  Well heck my left leg is shorter too do u think that is also causing my symptoms???LOL....Sorry not meaning to make light of it but I swear if we do not laugh we will go crazy!  What tests have they ran on you?  I am just curious...I have a little knowledge on the testing only because of the personal research I have started doing in hopes of finding my illness.  When we do not have the "common" illnesses then doctors think we are crazy or a panicked nutcase.  I told one doctor that tried to prescribe me Xanax for anxiety that I was panicked and that the anxiety was from my illness and "so called" doctors being unable to find it.  It is scary not knowing if you will wake up in the morning or what other odd ailment will strike next.  So I walked out and never returned.  I almost lost my eyesight due to one doctor telling me that my red eye was "just a broken blood vessel"!  I said, "really" it has been here for 8 weeks...turned out I had a serious eye condition known as Uveitis.  I am now on my third time round with it.  All I can say, sweety, is hang in there and NEVER give up.  You are your only advocate and if you give up then everyone else will to.  Oh, and please, NEVER SEE THAT PCP AGAIN!!  LOL

Take care!
DAwn

[deebrown30]

the doctors like to rule everything anxiety......you know your body better than anyone else and if you think that is is not right then most likely it is not....seek out a different doctor.

[deebrown30]

I would recommend a MRI WITH CONTRAST!!  Contrast is very important in seeing things that may not be visible with out.  I am not a doctor but I have been dealing with a mystery illness for several months now.  I know that the first MRI i had was without contrast and my neurologist said it had to have contrast so I went back for the second one.  Good luck with your illness....

[stayhomemommyandwife]

I completely agree about not taking doctors at their word. My husband is so frustrated with them, too. He's like, "Why can't they just give us a straight answer?"

I am glad your hubby came around. And I can totally understand his struggle at first. This is difficult to deal with, not only for us, but our families.

Well, hey, I am gonna leave you a message. Maybe we can email or be Facebook friends or such? I would love to have a friend who understands?

[deebrown30]

Hi there!  I just returned from seeing my eye doctor.  This time he says that the other 2 dxs were wrong!!  That I do not have scleritis but I have episcleritis.  I have a hard time believing him though.  The reason so is:  The first doctor that I saw told me that it is very hard to determine if you have episcleritis or scleritis by looking.  He put drops in my eyes and said he would return in 5 mins.  He took one look at my eye and said yep it is TRUE scleritis.  So when I asked this doctor to do so today he refused.  I think because he was so worried that it would actuallu prove him wrong!!  He now wants me on steroid drops for another 6 weeks.  I am nt interested in using steroids for that long in my eye.  Anyway enough about me!!  I am happy that your hubby believed you from the start because mine did not.  It took him awhile to come around.  He told me recently that it wasnt that he did not believe me but more so because he sis not know how to deal with it.  It is a lot for anyone to deal with especially when we are young and should be going strong.  You may have to go out of network and see someone in a bigger city.  I am considering going to a specialist out of state myself.  I know that I am sick and I KNOW that there is something to be found but  these people are not looking in the right places.  I am not willing to take doctors at their word anymore.  I have lost much of my faith in the medicine field.  I hope you have a better time with it than I did.  Take care

[stayhomemommyandwife]

Thankfully, my husband does believe me, because he's known me long enough to know this is not me. I am usually a very active person. I am grateful he does. I agree with the muscle twitching, I even outright asked for a referal to a nerologist, and asked, "Can you tell me I don't have MS or an aneyrysm or such" He said he couldn't say for sure but wanted me to try "stretches" first. Oh geesh. The difficult things for me is 1) We don't have family here to help. So, you are so blessed with your mom! That is great!! and 2) We live in a very small town with a limited amount of docs, who mostly work in the same offices...ugh! I could drive about 30 miles to a larger town, but they are out-of-network for my insurance. Honestly, I am just frustrated beyond belief. I like your idea of a support group. I will definitely look into that. Thank you!

[deebrown30]

I also have 3 kids

[deebrown30]

You have to be persistent.  Change doctors until you find one that has compassion and wants to help you.  I did so many times and I am still not sure that I found t he one.  I am lucky though, I have something wrong with my eye so the retinal doctor is searching for the cause. The muscle twitching is most def neurological issue.  You may also want to look at MS.  I am not trying to scare you but that fits the bill too.  I have researched about every auto immune disease.  I have found one that looks like it will be my answer. The eye doc is testing me for it and I will know tomorrow.  It is called Sarcoidosis.  I am alone al ot too.  When I first got sick I was too ill to care for myself.  I was bedridden for 8 weeks and semi bed ridden for another 3 months.  I am just now getting to where I can care for myself on the basic level.  My mom stopped working and came to help me.  Thank God for mommys!! She is the best!  Felt strange though being in my mid 30's and being babysat....lol.  I am so sorry that you are going thru this.  Does your husband believe you?  Do you have a support group?  That is really important for people like us!  Take care hun!

[stayhomemommyandwife]

You said, "I was panicked and that the anxiety was from my illness and "so called" doctors being unable to find it/" Me, too! This is awful. I have a 4-year old and my husband works 12-hour shifts. If something happened to me, my son would be here alone  until nightime!

I haven't checked about lyme. I will read about. Thanks for the tip. They have done all sorts of tests, though. You can read in the lists above, that's pretty much everything. All blood work, etc. The only thing I really haven't had is a CT with contrast of my head, and an evaluation from a neurologist, which I cannot seem to get anyone to allow me to have!

How can I get a doctor to take me seriously? I need someone to listen to me. I just want my life back. I used to be active and happy. Now I am almost incapacitated. I just want someone to listen and take me seriously...sigh.

[stayhomemommyandwife]

Thanks for your encouragement! Today, I went to a new Primary doc out of sheer desperation (and hope for a referal to a neurologist) You won't believe the answer I got today! That all my problems are due to my left leg being 1/4" shorter than my right! In all my life, even from a choiropractor, have I never been told that. And I am not a doctor, but I doubt it's causing all my syptoms! Wow!

[stayhomemommyandwife]

I would like to just add that my primary seems to think I am having anxeity, which I don't think I am, but I am not ruling anything out. In fact, anxeity sounds better than the others things I've read about with these symtpoms. I just wonder, can anxiety cause entire unilateral symptoms such as the ones I described above? My newest symtpom is muscle twitching in my legs, arms, and sometimes eyes and face. The burning sensation is on the inside and my skin doesn't actually feel hot or look red or flushed. I don't feel panicked when I am having this, but liek I said, I am not ruling anything out. The headaches are horrible, but seem to be in the center of my head, rather than on one side or the other. The headaches don't always accompany the burning, nor vice versa.

Thanks.