Hi again,
Thanks for all of the info. I will read over it a few more times and take notes to bring to my next appointment.
I think I had the urodynamics done - is that where they fill up your bladder until you cant take it , and the. They empty it out and measure how much urine you can hold and if there is any residual ? All done through a cystoscope? It was horrible. Even with the smallest amount of liquid it was painful
I tried amytriptaline but didn't notice much of a difference. However, it helped me sleep and I didn't get side effects. However, around the same time, I started with the tingling I. My arms.
I too, have burning everywhere. Its more prominent in certain areas like my thighs, bladder/pelvis,upper back, and feet. My hands were numb every time I wok up from sleep for months. That's when I was diagnosed with mod-severe big lateral carpel tunnel.
My bladder will be completely normal for months and then suddenly I have the burning, urge cry and frequent trips again . Nothing has helped this.
I should mention that I take lyrica also. I have never been able to take a lot because of the side effects.
Everything has come to a standstill as far as testing goes, and it frustrates me to say the least,because I have to suffer while things get worse. It seems that no doctor has heard of the pattern of symptoms I present. When it all began, my gp just kept thinking it was a uti,and anxiety. Everyone has disregarded the burning thighs and tailbone area pressure and burning. I did have an mri of the area and it was fine

So regarding autonomic functions, not long ago I was having rapid thumping heart beats for months. We did an ecg and everything looked fine! Diagnosis stress....there are times when I feel like I can't breath, but that actually may be anxiety. Who knows.
I would be up for doing the gastro testing. Like you, I thought it was heartburn or an ulcer, but antacids didn't help.

Aren't we lucky that our entire bodies are affected .. how do you deal? I hope the meds help you somewhat.

I would like to chat more, so any other info you think of will be so very much appreciated. I am lost, and suffering .

Hi lined-in-silver
I have found this website of a neuropathy support group. They have a lot of articles.
www.neuropathysupportnetwork.org

I can emphazise with you.
When you said doctors do not understand. I had doctors saying the same things to me, stating that I must be depressed. But I think perhaps anxiety and depression probably reflects in our faces, because we are so frustrated and feeling so ill.

I want to give you this advise: Do not give up, and remember, that a lot of times the doctors just do not know, and/or they do not care to researc further, so they just leave the patient like that. You must be your own advocat. Keep on research ( even though, one would think, that would be the duty of the doctor) A lot of doctors(mine included) like to just say: diagnosis Ideopatic Neuropathy. And we know of cause, there could be 100 of reasons for your neuropathy. But the sooner you find the reason, the sooner the doctor can treat the underlying cause.

Have you had tests for Diabetes? Blood test HgAiC, FBS, Glucose Tolerence Test, etc?
Test for thyroyd problems?
Tests for all the different Autoimmune Diseases that can cause neuropathy?

I will tell you. In the last 2 years I have seen 6 neurologists. I did not care, I needed answers ( and I still do not have all the answers)
I dumped 4 of them, I now have 2 good ones.
I have found a good doctor at a university teaching and research. He specializes in neuropathy
Most general neurologists do not know a whole lot about it. They just think we all have diabetes.
ASK YOUR DOCTOR to REFER you TO A SPECIALTY NEUROLOGIST.in neuropathy
Do you need to see a Rheumatologist? to rule out aotoimmune disorders that can cause this symptoms you have.


Right now, I seem to have things in perspective.

Important:
Try to have as many possible tests and procedures necesarry to diagnose. Once you have test results, that will back up for you and your doctor.
by the way, I have carpal tunnel too. with all the other stuff
All the best

hi

Regarding your rapid heart beat and chest problems with unable to breath, did you see a cardiologist, perhaps you need to have Ecocardiogram and stress test.

Ask your primary doctor to have a full workup on autoimmune diseases. This is a lot of blood tests.

Do look at that web link

Medical problems are discouraging. Try to keep thinking positive. You may have to quit walking until the cramping and pain are under control. I wish you luck with your new neurologist.

Give up walking ? What cramping?
I don't remember writing anything about that : /

I have had and ecg but not a stress test. I did blood work for many autoimmune diseases.
Working on a reply to your other large, very helpful and appreciated response :-)

Hi Synnove, I am finally able to respond to this.
So for starters, thanks for your understanding. I can't put into words how frustrating the last 3 years have been. It doesn't help that I am under 30 ,female, and have mental illness as well
Here in Ottawa, it takes roughly 9-10 months to see a specialist. I have only seen one, and she has done every test she can think of. As for blood sugar, I am hypoglycemic. I have low blood pressure too..everything is on the low side.
My thyroid has been tested many times, and is in the normal range, although my symptoms are that of hyperthyroid for sure. She tested for all kinds of auto immune diseases. Plus others, such as vitamin E, and Lyme disease.
My GP only recently referred me to a rhematologist, and I haven't heard anything. The current neurologist was trying to get me in with a different neurologist who specializes in the peripheral nerves, but they won't take me for whatever reason, so now I am waiting until December to see a different woman who interpreted the results of my nerve conduction study. December !! Who knows how much this is progressing in the meantime.
Were having a heat wave right now which has caused things to worsen. The fentanyl 25mcg patch I am on doesn't cut it anymore. Yet my pain "specialist" does not believe in breakthrough medication and keeps saying that opiates are bad, can cause more pain, and of course are addictive. It makes me wonder who the hell is allowed to benefit from these drugs that are made for pain??!!
I know it is because i am mentally unstable (depression, anxiety, and more)..and also my age. It is unfair and I feel under medicated.
They are SO quick to hand you the latest anti depressant though..which has more side effects, risk factors, you need to increase over time, and are dangerous to come off of suddenly. How is this any different than opiates? They are just more expensive. Doctors make more money for prescribing them. It seems that the best interest of the doctor comes first!!

hi lined-in-silver
What does that mean, that the spesial neurologist that specializes in neuropathy "will not take you"
I guess it has to do with the socialized healthcare system. But, try to INSIST !! Write an article in the local newspaper, say you are being denied proper health care!!
Regarding the referral to the Rheumatologist, and you are still "waiting to hear" ?? I think I know how it works (remember, I said I came from Canada? from Toronto, Ontario) Your GP has to make the referal He has his secretary make appointment, and when they finally get one, they will call you. You see, I know the system. But, try this: CALL, CALL, say on the phone you are getting worse. Write an article in the local paper again, say you are waiting to receive proper healthcare!!!
Why are you on the Fentanyl Patch? For neuropathy? Yes, I know it is very painful, but I did not know this was being used for that.
I know, those antidepressant meds, and anti seizure meds are VERY STRONG. At present time, I have told my rheumatologist I would like to come off Lyrica a bit, and try Amitriptyline which the neurologist suggested. I was on a very high dose of Lyrica, 500 mg daily. And it is affecting me very strongly on the nervous system.
I have a good rheumatologist, she is young in her 30 ties, and tries so many tests and procedures. She is also willing to listen to suggestions. I can E-mail her any time, she answers me, prescribe meds, and calls the pharmacy for me.
She told me to start Amitriptyline, low dose nightly, in addition to Lyrica for 2 weeks. then slowly decrease the Lyrica. The goal is to be on a combination of both. I now have decreased Lyrica by 150 mg, then (I think starting next week) she will increase th Amitriptyline. It is working
I'll tell you. When we are dealing with sickness like you and I have with a lot of pain, and especiall, when we have unsure diagnosis, we need to have frequent contact with our doctors.

The idea of waiting until December to see a specialist!!!! That just does not cut it for good safe health care.
In Canada, one could die, before one get the right medical treatment!
Waiting for 6 months???. Just call them and call them. Then if that does not help, call the ministry of health!! Complain!!
I'll tell you. I am a nurse, ( educated in nursing school in Canada)
And I know that one of the first and foremost things of importance in patient care, is COMFORT and pain control
Down here in the states, comfort and painmanagement is one of the important criterias inspectors look at when they come to our facility to qualify the hospital wwhen they inspect the nursing care.
So, heng in there!! make those calls!! If you are feeling realy sick, and unable, get someone else to write the newspaper article.
Synnove

Hi again,
Thanks so much for rooting for me. And completely understanding the Canadian health care system and its frustrations. I think this is the encouragement that I needed. I will not suffer for many many more months , without answers , on inappropriate medication, while being passed around like a hot potato .
When I contacted the neurologist number 2 after months of waiting to hear of an appointment , she said that they only take certain patients with certain neurological illnesses. Then she sent me to a different one ( the one ill be waiting 6 more months to see )
Oh boy .. Now I'm crying. I am not even 30 and feel that my life is over.

How do I go about writing an article ? I am totally capable - I just don't know how to get it published.

My pain is not being managed. The doctors are always on vacation, and put their best interest first. You're right , I could be dead by December.
I am ON IT!! Tomorrow I will start making calls. I won't let them intimidate me into being meek and passive. My life hangs in the balance .

The pain is everywhere but my head. It just feels like hot knives are stabbing me everywhere . It wakes me up. My guts burn , my feet burn, my bladder burns.
I saw two urologists who NEVER even considered that this was a nerve issue. Ugh.. What hell.
Went through two cystoscopies
I know a doctor whom I do work for - he got me two appointments quickly . I may have to big him again. I see him Tuesday.

Thanks.

By the way, I wish you luck with your combination of the two drugs. I would be willing to try amitryptaline again.
I know what you mean about lyrics messing with your nervous system. They don't know the long term effects of it. It scares me.