Me and my flomax too! Gradually loses it's effect. All the neuros have to do is fire up the old cell, tablet, or laptop and SIGN ON to learn a lot! Thanks for the encouragement. I second the can Rx.
akamalaccas said:
The main thing for me is enjoying being able to walk again.The freedom this brings from paralysis comes from the IVIG.For me this trumps anything else but amongst old men the prostate should always be a topic for discussion with or without CIDP.
I had my 77th IVIG accompanied by a man with MS who is gradually going blind.
I count my blessings and remain forever grateful to still see the sunrise and the sunset.Just forever grateful for 7 years of life because of IVIG,complimented with medical cannabis.
Thanks for the encouragement! The dream of being able to walk farther than my mailbox.
Of course, the lessening of the irritable bowel symptoms would be good too.
Shawn Shawn The Leprechaun said:
If WE all know that CIDP affects these things, why don't our Neurologists?
Why am I on Flomax for an slow and intermittent urination issues, when it's a neurological issue?
Why did I go through the swallow studies, just to have them say there's nothing wrong with me? I'm glad I haven't told them I can't control my gas.
Next time I see my neuro, I'm going to mention that many of us are suffering the same "sphincter effect" issues and tell him to add it to his list of CIDP symptoms.
Yes, please do add that to the list! I've been suffering from IBS for years and now I'm supposed to again be scheduling all the GI tests because my neuro doc said something to the effect of "well, the GI issues are not caused by the CIDP, so you should be worked up by your GI guy." Therefore I'm trying to schedule an abdominal CT scan, upper GI scope, and the lower GI tests all around the thrice weekly IVIG treatments and various other muscle/nerve pains and issues of CIDP. Needless to say it's a "slow go" on the GI tests. So far I've had a lower GI scope that proved to be perfectly normal, making me look like I made up all of the bowel distress. I'm almost hoping the "abdominal binder/boa constrictor" feeling I have in my abdomen will be solved by showing a huge (non-malignant of course) space alien tumor in my belly trying to get out, which is what I envision whenever I have a bad day in this regard. We should all collaborate on a book about these symptoms from the patients' perspectives and give it to neurologists to read. The empirical research articles do not do this disorder justice and are not nearly as interesting as what most of us are describing on this website.
Geeps said:
Thanks for the encouragement! The dream of being able to walk farther than my mailbox.
Of course, the lessening of the irritable bowel symptoms would be good too.
Shawn Shawn The Leprechaun said:
If WE all know that CIDP affects these things, why don't our Neurologists?
Why am I on Flomax for an slow and intermittent urination issues, when it's a neurological issue?
Why did I go through the swallow studies, just to have them say there's nothing wrong with me? I'm glad I haven't told them I can't control my gas.
Next time I see my neuro, I'm going to mention that many of us are suffering the same "sphincter effect" issues and tell him to add it to his list of CIDP symptoms.
I know just because we have CIDP that all the symptoms we experience aren't necessarily due to that disease. That said, there are common complaints that seem to run through patients with CIDP. Neuros tend to blame something else if the symptoms aren't in their mental "appropriately significant symptoms" playbook. If it walks like a duck, smells like a duck and looks like a duck, IT'S A DUCK! Meaning that the symptoms patients with CIDP express should be considered related to CIDP until proven otherwise.
Cookie said:
Dear Shawn,
Yes, please do add that to the list! I've been suffering from IBS for years and now I'm supposed to again be scheduling all the GI tests because my neuro doc said something to the effect of "well, the GI issues are not caused by the CIDP, so you should be worked up by your GI guy." Therefore I'm trying to schedule an abdominal CT scan, upper GI scope, and the lower GI tests all around the thrice weekly IVIG treatments and various other muscle/nerve pains and issues of CIDP. Needless to say it's a "slow go" on the GI tests. So far I've had a lower GI scope that proved to be perfectly normal, making me look like I made up all of the bowel distress. I'm almost hoping the "abdominal binder/boa constrictor" feeling I have in my abdomen will be solved by showing a huge (non-malignant of course) space alien tumor in my belly trying to get out, which is what I envision whenever I have a bad day in this regard. We should all collaborate on a book about these symptoms from the patients' perspectives and give it to neurologists to read. The empirical research articles do not do this disorder justice and are not nearly as interesting as what most of us are describing on this website.
Geeps said:
Thanks for the encouragement! The dream of being able to walk farther than my mailbox.
Of course, the lessening of the irritable bowel symptoms would be good too.
Shawn Shawn The Leprechaun said:
If WE all know that CIDP affects these things, why don't our Neurologists?
Why am I on Flomax for an slow and intermittent urination issues, when it's a neurological issue?
Why did I go through the swallow studies, just to have them say there's nothing wrong with me? I'm glad I haven't told them I can't control my gas.
Next time I see my neuro, I'm going to mention that many of us are suffering the same "sphincter effect" issues and tell him to add it to his list of CIDP symptoms.
I was diagnosed with CIDP 1 yr ago. initially treated & released but had a relapse. I'm now in a wheelchair but also waiting for hip replacement surgery. but am slowly getting better. Was wondering how you are doing. Have you had your tests yet? Any results?