the rheumatologist called yesterday to let me know that everything he tested for came back within the normal range. he said he ran a complex rheumatological panel on me and after receiving those results and examining me, he does not feel i have an autoimmune disorder at the root of all my symptoms.
the only thing that came back out of range was my blood sugar which was 56--normal is 70-100. since my level was so low, and i wasn't fasting, they sent me for a repeat fasting glucose test this a.m. to make sure it wasn't an errant result.
i know i should feel relieved, and i am to some degree, but i was so desperate for some answers as to why i feel the way i do, and we still do not have them. i cried for a long time after getting off the phone due to my frustration over a lack of diagnosis.
at any rate, i appreciate the responses from those who took the time to show their support. everyone has been so kind.
with healing thoughts to everyone on this board,
Binx, Sorry that you did not get a definitive answer from those tests. Did I remember that you have a C5-C6 deformity now also? If so I would suggest you search for a chart of the nerves and the areas that they innervate. I know that a lot of the neuro type symptoms may be explained by the involvement of the spinal cord. I know that I have trouble from C4-T1 and that covers a lot of territory when it comes to the areas of the body that those nerves serve. It might help you understand some of the symptoms you are experiencing. Let us hear how you are doing!
thank you for your reply. i do have a c5-6 herniation, with bulges at c3-4 and c4-5. i recall you had a cervical discectomy--right? mine was supposed to take place next thursday, but i have postponed it as my other symptoms and overwhelming fatigue sort of overtook my concern about the disc herniation at this stage of the game. it will likely take place at some point, but just not next week.
both neurosurgeons i saw did not seem to think that my c-spine issues would cause the symptoms i am experiencing, and told me to go back to my neurologist; but i will look for a chart that you mention to check out the nerve pathways and related symptoms that might result from injury to the specific levels that are giving me troubles.
One thing I have learned even when the diagnoses does not come in for what we may suspect is to NOT give up in finding out what is wrong with us medically. Doctor's miss the boat sometimes, as yes they are too human. Some doctors will be very reassuring so that they let us know that although we don't have one particular thing, they will help us figure out just what is making us feel so bad.
Please do NOT give up. Keep track of your symptoms, all of them. There IS an answer and I beleive that you will find out eventually. I know the wait is hard, it really is. But never believe that you don't feel well in a way that means that is normal. Our bodies are wonderful in that they are trying to get our attention and tell us something.
Hang in there, keep posting and remember we all care and wish you well
thank you, madison, for your kind and encouraging post.
i am not going to give up and if i become a gadfly to my doctors, too bad for them. this is my life we're talking about and i will be dam*ed if i am going to waste away in my reclining chair for the rest of my days!
Here for you binx.....
I remember being thrown out of emergency rooms, literally, being told that they were for SICK people. I will never forget how I cried.
You hang in there and let us know how you are doing. It will be okay....
I have been told for years that I just have anxiety or I am depressed. Now my bloodwork is starting to catch up with my symptoms. Not enough for a diagnosis buit enough to confirm that I am NOT crazy!!! Something is going on inside my body.
Whether or not its lupus???? IDK. I guess like madison said we have to keep fighting.
yes, madison, you are very encouraging, and i appreciate your taking the time to contribute your thoughts so much! i am actually going to see a second-opinion rheumie on thursday just to make sure what the first one said makes sense to her.
and momto, thanks for your support as well. i hope your path to a diagnosis continues to unfold for you. i saw that you posted on the lyme board as well. i'm pursuing western blot testing through IgeneX since the ELISA screening is notoriously inaccurate, so we'll see if that turns up anything to hang my hat on.
i will certainly keep everyone posted as new info becomes available.
in the mean time, healing thoughts to you all during this holiday season.
well, i had an interesting 2nd opinion rheumatologist appointment on thursday. she was the rheumie my neuro-ophthalmologist recommended after he noted optic nerve vasculitis at the end of october, but i couldn't get in to see her right away. she has a consultive practice only, and is also a professor at the major research university in my city.
after talking to us for nearly an hour and taking a very detailed history, she examined me thoroughly. afterwards, she sat across from me and stared at me for what seemed like an eternity and then asked me when was the last time i felt truly well. i hesitated, but then confessed that it was right before i got pregnant 5 years ago. i have been apprehensive about saying that that since some of my other docs automatically assume i am just some post-partum/depressive hormone victim.
she raised her eyebrows and said that timing fit with her hypothesis that i am suffering from an autoimmune thyroid disease since many women who develop autoimmune problems do so after pregnancy. she noted that my thyroid was not enlarged but felt very "full". she also said that people can experience neurological symptoms from autoimmune thyroid disorders, and that they can also affect one's vascular system which would explain the optic nerve artery issues that my neuro-ophtho saw.
SO, to make a long story longer, i am going for a thyroid ultrasound on 12/18 and will have a new battery of more sensitive thyroid blood tests. i tried to have my blood drawn yesterday, but some of the tests can't sit over the weekend so i will go on monday. i have a follow up appointment with this rheumie on 1/7/10, and if it's what she thinks, she will refer me to an endocrinologist who will hopefully be the last in a long line of docs. i am trying not to be overly optimistic, since we have been disappointed over and over again, but i can't help but feel a glimmer of hope.