Hello everyone,

I want to thank you for your support!!! It means so much to me to be able to have people listen. Not too mention being able to relate what I am going through.


I have to report that one of my recent appointments was a complete and total waste of my time and I just can do it anymore. I no longer have the energy or the ambition to keep this up. According to these doctors (Supposed to be the best? Ha, that's a good one) there is nothing wrong with me.

Well then if that is the case why the He** does my neck, lower back, right hip, right leg & both feet writhe with pain? This doctor looked at my medical records and excepted them as gospel would not take into account my new symptoms or order any new testing. They told me this is not peripheral neuropathy because it does not present the way I am describing it and they said they would not have been able to touch my feet due to pain. UMM? GUYS, HELLO? YOU COULDN'T TOUCH MY FEET DUE TO THE PAIN !!!! REMEMBER ?

I am so upset no one is of any help including my girlfriend. she says she is but everytime I try and talk to her she does not want to say anything. The only person who is helping is my pain doctor and for that I am ever thankful but how long will he continue to Rx pain meds when all the other doctors tell me that there is nothing wrong?

I am to have a bone scan done which was ordered by a Rheumatologist but why bother it will only help prove that there is nothing wrong. How can I hurt this bad, Why can't I feel my feet, How can they not find what is causing this? Personally I am really starting to think that this might be diabetes related. Everytime I eat something high in carbs or sugar, I become hot sweaty, nauseous, my vision goes phunky, and my pain and numbness goes through the roof.

the only problem with all that is my latest blood tests have been normal after I stupidly eat such foods. Of course no one wants to hear what I have to say, because I am a foolish person who is making all this up. SIGH, WHAT ON EARTH CAN I DO THAT I HAVEN'T ALREADY DONE?

Again I say thank you for listening to my rant. I've had the day from He** and the 8 hour drive on top of it not to mention the raging sinus infection has not helped.

i am sorry you are in such pain quahog. and it really is the pits when those the closest don't understand. i live that too.

have you thought of hypoglycemic? ( ok..i'm the worst speller...) did you have the fasting diabetes test done?

don't give up on trying to find the answer or the righ dr who will listen. me....i got rid of the nay sayer dr's that only give me doom and dispare for a dx. nope....not going to give up and give in to it.

just remember quahog, you are not alone here. i may not always have the right thing to say....but i'm a good listener...and i always have treats.

YES!!! There are times when I am totally gung-ho about going to doctors appts and working on my pain issues. Then there are times when I say I have had enough and I need a vacation from these same doctors. I know they are trying to help me but sometimes what they call help, hurts more. Like all of you have been through tests up the waazoo, doctors coming out my backside, specialists the same way. It seems my full-time job is going to appointments right now. Eventually I will get sick of it and taper it off, but right now it seems my body needs the attention from PT and TPIs. Lovely huh?
Well, the best advice I can give you is to keep fighting when you feel you are being talked down to or shrugged off. You have to be your own advocate, unfortunately no one else will.
Good luck!

Oh Quahog,

I am so sorry that you are having such a tough time right now! It can be very discouraging when you have one test after the other and they can't find the answers. Please don't give up! There is a reason you are having problems and if you need to keep asking for test after test until they can find the answers.

I wish I could help you more but know that I'm here if you ever need to talk.

Take care!
Linda

Quahog,

One of the spinal docs I saw insisted that I have a fasting glucose tolerance test. You might want to insist that your pcp send you for one...I did test high, but not high enough for medications...I think the high doses of steroids I was on for sinus infections threw my sugar off...I seem to always be on some sort of steroid whether it be a shot or a pill....Steroids can cause sugar to escalate.

Quahog, that is one of the worst and most frustrating places to be in!!! I have gone through years and years of getting docs who have told me that the problems in my back are not enough for pain. I have others who said, "Yes, Indeed! Lots of pain!" I've had a few that blamed fibromyalgia, and had a couple that do not believe in that. I prematurely turned very gray at about 40, and it does not run in the family. It is obvious that I am in severe pain, and STILL there are some that say it cannot exist. To h*** with them. Move on. Find docs who are genuinly compassionate, and believe you. Some do not advocate shopping docs. But, I do. I just started with a Rheumatologist who has changed my meds and is trying to find the right combo for me. What I have is not fixable. Right now, the meds are not working, but it has only been 8 days, and I am sure that she will either up it, or change it next visit. Don't give up hope. That is the worst thing we can do to ourselves...or, that we can allow imcompetent docs to do to us!!!

sally

I have had many symptoms like you and just recently found I had Arachnoiditis......have you (like so many of us back pain sufferers) had any steroid epidurals/myelograms/or any kind of lumbar punctures/trama (the most common causes of this codition) ?? My numbness is constant in some areas and travels in others....might be worth a look to see if you have any other of the symptoms. I will warn you though, docs don't like to give the Dx since its so hard to prove. Anyway here is a link if you want to check it out.
http://p102.ezboard.com/barachnoiditissupport

Have I ever been just plain fed up with doctors??? An emphatic YES!!! I won't even bother to count the times. So far I've seen nearly thirty in the past four and a half years, and like you, I'm still chasing a diagnosis. I've waited as long as six months for a single appointment, and then got to spend ten minutes with the doc, who was supposed to be the best in our state.

There are others here who live with the double insult of suffering and not knowing why. I'm sure you'll meet them, and they'll really understand how much being undiagnosed adds to the trauma of an illness. We have no real "home" on these forums, so we tend to skip around looking for answers. In a way, that makes each forum a home...

I hope you find some answers soon, Quahog, and start feeling better, too.

Idealist

I get really fed up with the doctors sometimes, too. I finally have a team of doctors that I am mostly comfortable with, though I could probably stand to get a new nephrologist (kidney doc), since my other docs don't agree with what he said and think there are things he should have ordered, etc. I have a whole bunch of doctors, though... and they are pretty much good ones, though they have their quirks. I have a metabolic/genetics doc that I really like, and I also have a neuromuscular doc, a primary care guy, a cardiologist, a pain management doc (she is a PM&R doc), an ophthalmologist, a psychiatrist, an ENT, and an allergist. And the nephrologist guy that I am thinking about replacing. So with all of those doctors involved, it has been really important to make sure that they are all educated about my disorder (it is rare) and that they are accessible when I am sick and that they are smart enough and involved enough to help figure this all out.

I have a diagnosis now... I have a metabolic myopathy that we think is most likely a mitochondrial disorder. We are working on pinning down the mito part of the dx (just got insurance approval to get my fresh muscle biopsy done). They are sure that I have a metabolic disorder that is causing my myopathy, my kidney & acid-base stuff, and maybe my cardiac and neuro stuff.

But 5 years ago, I got sick with some weird neuro symptoms that in retrospect seem to fit with the stroke-like episodes you can get with mito... and I had a terrible "undiagnosed" experience beginning with those symptoms. The neuro people ruled-out MS with an MRI and an LP. I had an EMG and some bloodwork. That was it, though. None of the stuff that was ordered would have showed the mito stuff. After they were done ruling-out MS, I was still having symptoms but they decided it was all in my head since I didn't have any of the disorders they were testing for. It really sucked because I was still getting this numbness, weakness, etc... and terrible fatigue, and also bad nausea... but they were telling me it wasn't real. I alternated between being angry with them for not believing me and doubting my own perceptions of reality. The neuro stuff gradually got better, and I had a little while of healthy time before I got really sick in Jan 2005 and my disorder sort of declared itself. Having symptoms and no diagnosis is a really awful experience, though.

Even now, when we know that I have this metabolic stuff, I have encountered docs while at the ER or inpatient , who are disbelieving of the whole thing. I have had them say stuff like "but that's so rare, what are the chances you actually have that?" (To which I say that the chances are pretty good since I fit the clinical characteristics, have some funky labs and a funky muscle biopsy, and since my specialists who actually know about metabolic disorders think I have it).

There is something the medical people say about rare diagnoses: "If you hear hoofbeats, think horses, not zebras." I have a "zebra" diagnosis. My reply to the "hoofbeats" thing is that when you get close enough to see that hoofed animal, and you notice that it is white with black stripes, and you are on the plains of Africa... you'd be stupid not to call it a zebra.

thank you everyone I knew I could count on you to help lift my spirits!!

In answer some of your responses yes I have had a Fasting oral glucose tolerance test and I failed it !! so according to my PCP I have diabetes. However, I have since lost about 60lbs. Exercise everday (or when I can) even if it kills me and believe me it does My blood pressure has normalized and I no longer need meds for it and my glucose levels are ALWAYS normal. Fasting, 1-2 hours after eating and random. Even after eating high carb, high sugar foods. of course I have those symptoms I've mentioned.
Another thing that is strange is that after I do it eat food like that i get this weird taste in my mouth almost like acetone? which might suggest DKA but when I test my glucose it is normal and I know my glucometer is working correctly. If my sugar is spiking i have been unable to catch it.

I am also on disability and I do have a Dx which came from my pain doctors and they are, bilateral upper extremity and neck pain, low back pain, bilateral lower extremity pain, cervical lumbar degenerative disc disease and sensorimotor neuropathy. but according to everyone else I don't have any of these even though I have a small disc hernaition at C3 - C5 and at L5-S1 and neuropathy confirmed by EMG/NCV. I do think the neuropathy has become better because my feet don't hurt like they once did but they are still numb and I also have this wierd cold water, creeping crud feeling over my right leg and foot too and I don't have RLS according to a sleep study I've had. and a new EMG/NCV test showed NO neuropathy !
The disc degeneration isn't a disease because everyone has a form of it according to some doctors I've seen The disc herniation are also too small and don't appear to be affecting any nerves or nerve roots or so I have been told but it does impinge upon the thecal sac and to me appears to be causing stenosis.
(I don't know what the policy is on other websites but I have some images of my cervical MRI showing this and if I can post the link I would like to show them to whoever is interested)

Sigh, I guess it is good enough for the pain clinic and the social security admin but not for anyone else. The thing is after hearing from all these doctors about it I myself am begining to think that they may be right.

Thanks again everyone

"Update: I have been Dx'd with Lyme Disease and it is more than likely chronic"