Aa
Finished with Doctors
I've been gone awhile again. Just wanted to stop in and say, "I quit!" No more new doctors, tests, etc. until I am falling on my face every day, or back in bed 100% of the time.
I was referred to Rush Presbyterian in Chicago, IL. 3rd G.I. Doc said Rush could help me with the nerves in the anal sphincter muscles. Great. Finally, I think, "someone" has a clue.
So, G.I. Docs office schedule appt with colorectal surgeon at Rush & forwarded my records to him. I filled out lengthy forms. Saw the surgeon on 6/19. Explained everything to him, and he sat there, with this clearcut look that said he had no clue. I even asked him, "You aren't getting any of this, are you?" He admitted, "No, not yet". Jeez, how hard it is to understand, that a person has no nerve sensation to have a bowel movement????
He did a rectal exam,(I was in pain for 3 days!!! Between the two enema's 3 hours before the exam, and the rectal exam, the nerves in my spine were on fire!)
I told him I had other reports I could send him, tests done by doctors other than my G.I. Doc, and he said, "Send them & I'll sift through them and see if I come up with anything".
Then told me I would be better off seeing this other doctor at Rush that specializes in bowel problems, and pelvic floor dysfunction. I had already told him that my 2nd G.I. Doc said it was Neurological and since I have no nerve sensation, bio-feedback is of no use to me.
The Coordinator was supposed to call me 3 weeks ago, to schedule the appt. with the other doctor.
Good thing she didn't call, saved Rush the cost of a phone call.
And most likely, he didn't get anything out of the other reports I sent him.
Well, I am getting one thing out of the vist....a nice big bill. (:
Seriously, any one else give up on doctors?
Sheila
Sheila
I was referred to Rush Presbyterian in Chicago, IL. 3rd G.I. Doc said Rush could help me with the nerves in the anal sphincter muscles. Great. Finally, I think, "someone" has a clue.
So, G.I. Docs office schedule appt with colorectal surgeon at Rush & forwarded my records to him. I filled out lengthy forms. Saw the surgeon on 6/19. Explained everything to him, and he sat there, with this clearcut look that said he had no clue. I even asked him, "You aren't getting any of this, are you?" He admitted, "No, not yet". Jeez, how hard it is to understand, that a person has no nerve sensation to have a bowel movement????
He did a rectal exam,(I was in pain for 3 days!!! Between the two enema's 3 hours before the exam, and the rectal exam, the nerves in my spine were on fire!)
I told him I had other reports I could send him, tests done by doctors other than my G.I. Doc, and he said, "Send them & I'll sift through them and see if I come up with anything".
Then told me I would be better off seeing this other doctor at Rush that specializes in bowel problems, and pelvic floor dysfunction. I had already told him that my 2nd G.I. Doc said it was Neurological and since I have no nerve sensation, bio-feedback is of no use to me.
The Coordinator was supposed to call me 3 weeks ago, to schedule the appt. with the other doctor.
Good thing she didn't call, saved Rush the cost of a phone call.
And most likely, he didn't get anything out of the other reports I sent him.
Well, I am getting one thing out of the vist....a nice big bill. (:
Seriously, any one else give up on doctors?
Sheila
Sheila
Hi, Quix.
Thanks for understanding my decision to quit with new doctors. My D.O. has been a Godsend.
I think, out of all of the doctors, he is the only one with a personal interest in helping me.
A few weeks ago, we talked, and we agreed I had come a long way, just since October. He kept working with me, until we found a combo of meds, and increase, that have enabled me to be on my feet.
Nothing has ever felt so good, as to get out of bed, at 5:30 every morning, and be able to shower and dress myself, drive myself to mass, and then, join my group for coffee, after.
I even became a Eucharistic Minister a few months ago, and my Pastor understands my health issues, and has allowed me to stand, at the foot of the Altar to be the Eucharistic Minister for the Blood of Christ.
I have even regained 5 of the 18#s I lost last spring!
I will admit, by the time I come home, I am pretty wiped out, but it's a good day.
I'm trying hard to get back on-line again.
Miss all of you so much.
Hugs,
Sheila
Thanks for understanding my decision to quit with new doctors. My D.O. has been a Godsend.
I think, out of all of the doctors, he is the only one with a personal interest in helping me.
A few weeks ago, we talked, and we agreed I had come a long way, just since October. He kept working with me, until we found a combo of meds, and increase, that have enabled me to be on my feet.
Nothing has ever felt so good, as to get out of bed, at 5:30 every morning, and be able to shower and dress myself, drive myself to mass, and then, join my group for coffee, after.
I even became a Eucharistic Minister a few months ago, and my Pastor understands my health issues, and has allowed me to stand, at the foot of the Altar to be the Eucharistic Minister for the Blood of Christ.
I have even regained 5 of the 18#s I lost last spring!
I will admit, by the time I come home, I am pretty wiped out, but it's a good day.
I'm trying hard to get back on-line again.
Miss all of you so much.
Hugs,
Sheila
Hi, Erin.
I am appalled that the Urologist couldn't get you in until September??? When you said you cannot urinate NOW. That is extremely dangerous!
Did you go to the ER at the hospital?
I understand your frustration, and disappointment, when you think you have finally found a doctor that knows what is wrong, and they simply want to do another test.
I felt so discouraged after my visit to Rush, that I shut down emotionally for a good 3 days, then, I went back to weekday morning mass, and remembered that this is only the day I've been given.
I would like to see Universal Health Care, too, BUT, and this is a biggie, I want it to be the BEST health-care money can provide! Every single human being is entitled to the best medical care, not just people with money.
Please demand some help at the ER!!!!!
Sheila
I am appalled that the Urologist couldn't get you in until September??? When you said you cannot urinate NOW. That is extremely dangerous!
Did you go to the ER at the hospital?
I understand your frustration, and disappointment, when you think you have finally found a doctor that knows what is wrong, and they simply want to do another test.
I felt so discouraged after my visit to Rush, that I shut down emotionally for a good 3 days, then, I went back to weekday morning mass, and remembered that this is only the day I've been given.
I would like to see Universal Health Care, too, BUT, and this is a biggie, I want it to be the BEST health-care money can provide! Every single human being is entitled to the best medical care, not just people with money.
Please demand some help at the ER!!!!!
Sheila
Hi, ShadowSister.
I understand the manual bowel program, so no worries about being too graphic. And I can relate to keeping the stool, firm enough, to force the anal sphincter muscle to open, and I have experienced horrendous rectal spasms, at times, as a result.(And Lord help me, if the stool is too soft.)
Did the doctor name the large bundle of nerves?
I have seen, 2 Neuro's, 3 G.I. Doc's, 1 Colo-Rectal surgeon, 1 Spine Specialist, 1 Rheumatologist, to date since this began in November of '05. And I see my D.O. on a monthly basis. He manages my pain meds.
Believe me, I am a strong person. I am not giving up on life; just the opposite. I am just not going to waste my time and money on clueless doctors. I have an agreement with my local Neuro, that if and when I develop further symptoms, I will see him.
He said MS from the start, but does not want to put it officially in my records until I fit the criteria and need the meds.
I have a much better quality of life, now, than I did just this past October. I am able to get up each morning, shower and dress, and attend morning mass. I became a Eucharistic Minister. I'm OK, emotionally now.
I do experience quite a bit of fatigue, so I have learned to plan my days, accordingly.
The pain med combo I began in October, has helped me quite a bit with the nerve pain, as long as I am not over-active.
I have learned to accept my limitations.
I am 56 years old; no more time to waste, sitting in waiting rooms.
I leave it to God, to guide my doctors to a diagnosis.
I appreciate knowing that you are here, offering me support.
I don't come in too often, as it is hard, even to sit with a laptop.
Hugs right back to you! :)
Sheila
I understand the manual bowel program, so no worries about being too graphic. And I can relate to keeping the stool, firm enough, to force the anal sphincter muscle to open, and I have experienced horrendous rectal spasms, at times, as a result.(And Lord help me, if the stool is too soft.)
Did the doctor name the large bundle of nerves?
I have seen, 2 Neuro's, 3 G.I. Doc's, 1 Colo-Rectal surgeon, 1 Spine Specialist, 1 Rheumatologist, to date since this began in November of '05. And I see my D.O. on a monthly basis. He manages my pain meds.
Believe me, I am a strong person. I am not giving up on life; just the opposite. I am just not going to waste my time and money on clueless doctors. I have an agreement with my local Neuro, that if and when I develop further symptoms, I will see him.
He said MS from the start, but does not want to put it officially in my records until I fit the criteria and need the meds.
I have a much better quality of life, now, than I did just this past October. I am able to get up each morning, shower and dress, and attend morning mass. I became a Eucharistic Minister. I'm OK, emotionally now.
I do experience quite a bit of fatigue, so I have learned to plan my days, accordingly.
The pain med combo I began in October, has helped me quite a bit with the nerve pain, as long as I am not over-active.
I have learned to accept my limitations.
I am 56 years old; no more time to waste, sitting in waiting rooms.
I leave it to God, to guide my doctors to a diagnosis.
I appreciate knowing that you are here, offering me support.
I don't come in too often, as it is hard, even to sit with a laptop.
Hugs right back to you! :)
Sheila
Hi, Linda.
I'm sorry you are going through the same bowel problem.
It sounds like you have the same problem as me; your anal sphincter nerves are not receiving the messages from the brain.
To of my G.I. Doc's told me, as I already knew, that Miralax, fiber & water wouldn't help me. They just add to my problem. If stool gets too soft, the muscle is not "forced" open.
I think they can't understand, because they haven't experienced it.
It seems like G.I. Docs ad Neuro's could get together on this issue.
My regular G.I. doc knew it was MS related, and told my Neuro, but it didn't get me the dx.
My Best to You, as well.
Sheila
I'm sorry you are going through the same bowel problem.
It sounds like you have the same problem as me; your anal sphincter nerves are not receiving the messages from the brain.
To of my G.I. Doc's told me, as I already knew, that Miralax, fiber & water wouldn't help me. They just add to my problem. If stool gets too soft, the muscle is not "forced" open.
I think they can't understand, because they haven't experienced it.
It seems like G.I. Docs ad Neuro's could get together on this issue.
My regular G.I. doc knew it was MS related, and told my Neuro, but it didn't get me the dx.
My Best to You, as well.
Sheila
doni, my darling GF!
Hon, I know how you feel about what I'm going through, and I appreciate the prayers. I'm in a good place now, emotionally.
I'm grateful to be on my feet. I enjoy my mornings; mass, coffee with my group, even a camping trip here and there.
Just not wasting any more money on doctors. I'm spending money we can't afford. Wasting time in waiting rooms, when I could be with Rich and my babies.
I have found great comfort in my faith. And the realization that none of us walk this life, unscathed.
I think, a large part of the medical profession is just clueless, but yet, they still get paid.
And I think they just don't understand PPMS.
My love & prayers are with you, too.
Love,
Sheila
Hon, I know how you feel about what I'm going through, and I appreciate the prayers. I'm in a good place now, emotionally.
I'm grateful to be on my feet. I enjoy my mornings; mass, coffee with my group, even a camping trip here and there.
Just not wasting any more money on doctors. I'm spending money we can't afford. Wasting time in waiting rooms, when I could be with Rich and my babies.
I have found great comfort in my faith. And the realization that none of us walk this life, unscathed.
I think, a large part of the medical profession is just clueless, but yet, they still get paid.
And I think they just don't understand PPMS.
My love & prayers are with you, too.
Love,
Sheila
Hi, Sam.
Well, where I live in the States, most of these tests are not available, so I am referred where they do them.
In November, it will be 4 years for me, and I just feel that until something happens that screams in their faces, "SHE HAS MS!!!!" I am going to just see my D.O. to help with pain control, and live my life the best I am able.
I am praying you get some answers in August.
Hugs,
Sheila
Well, where I live in the States, most of these tests are not available, so I am referred where they do them.
In November, it will be 4 years for me, and I just feel that until something happens that screams in their faces, "SHE HAS MS!!!!" I am going to just see my D.O. to help with pain control, and live my life the best I am able.
I am praying you get some answers in August.
Hugs,
Sheila
Hi, LuLu!
I can give you the condensed version of my story. Back in November of '05, I developed back pain and bowel problems, seemingly out of the blue. (However, the whole summer I was incredibly fatigued.)
By Christmas, I could do nothing but lay on the couch. The pain in my spine was that bad.
I had a few misdiagnosis-es, wrong meds, etc. Until my D.O. finally referred me to a spine Specialist at a Pain Management Clinic, who did 3 diagnostic nerve blocks and discovered the pain is nerve pain, stemming from the medial branch nerves. Neuro's say that tells them nothing.
I've been diagnosed with Small Fiber Neuropathy in my legs and thighs, unknown cause. 2 Ogliconal bands in Spinal Fluid. In the summer of '07, I had a brain MRI, showed only 1 lesion.
Finally, lost all nerve sensation in the anal sphincter muscles in '07. 2nd G.I. Doc said it is Neurological; nerves are not receiving messages from the brain. He called my Neuro, told him this should give me my MS diagnosis, who in turn, called me in just to charge me $135.00 to tell me he didn't know what was wrong with my bowel.
I will only return to the Neuro when I develop another major symptom. Right now, my D.O. is taking good care of my pain management, and I trust in God to take care of the rest. I hope that doesn't sound, "Holier than Thou" because I am not that kind of person, but I just feel I need to put my faith in God, to guide my doctors.
Last year, I lost 18#s in 3 months, and went through a lot of bowel tests and biopsies; all negative.
I was down to 72#s, but I am up to 77#s now.
And yet, I have finally found peace.
Hope this helps you understand the problem you are having with your anal sphincter muscle. The good thing, is every once in a while, I do get some feeling, and that is new.
Hugs,
Sheila
I can give you the condensed version of my story. Back in November of '05, I developed back pain and bowel problems, seemingly out of the blue. (However, the whole summer I was incredibly fatigued.)
By Christmas, I could do nothing but lay on the couch. The pain in my spine was that bad.
I had a few misdiagnosis-es, wrong meds, etc. Until my D.O. finally referred me to a spine Specialist at a Pain Management Clinic, who did 3 diagnostic nerve blocks and discovered the pain is nerve pain, stemming from the medial branch nerves. Neuro's say that tells them nothing.
I've been diagnosed with Small Fiber Neuropathy in my legs and thighs, unknown cause. 2 Ogliconal bands in Spinal Fluid. In the summer of '07, I had a brain MRI, showed only 1 lesion.
Finally, lost all nerve sensation in the anal sphincter muscles in '07. 2nd G.I. Doc said it is Neurological; nerves are not receiving messages from the brain. He called my Neuro, told him this should give me my MS diagnosis, who in turn, called me in just to charge me $135.00 to tell me he didn't know what was wrong with my bowel.
I will only return to the Neuro when I develop another major symptom. Right now, my D.O. is taking good care of my pain management, and I trust in God to take care of the rest. I hope that doesn't sound, "Holier than Thou" because I am not that kind of person, but I just feel I need to put my faith in God, to guide my doctors.
Last year, I lost 18#s in 3 months, and went through a lot of bowel tests and biopsies; all negative.
I was down to 72#s, but I am up to 77#s now.
And yet, I have finally found peace.
Hope this helps you understand the problem you are having with your anal sphincter muscle. The good thing, is every once in a while, I do get some feeling, and that is new.
Hugs,
Sheila
Hi, Hon. I totally understand your decision to quit the doctors. Sounds like they quit on you before they ever started. I have had those feelings in the past, too. I had not heard ever that anyone was saying PPMS, though it makes a whole lotta sense to me. Your GP sounds like a saint. If this is PPMS, then aggressive symptomatic care is what is needed.
I am truly happy that you are at peace with the whole thing. One day a time. It's an attitude we would all benefit from. And your faith will carry you through.
I hope we can see you more often. You have a lot to share with people.
Quix
I am truly happy that you are at peace with the whole thing. One day a time. It's an attitude we would all benefit from. And your faith will carry you through.
I hope we can see you more often. You have a lot to share with people.
Quix
Hi, Shell.
I never heard a word from either that doctor or the Coordinator. I sent him everything after the visit; he promised to "sift" through everything and see if he came up with anything, but apparently, he wasn't able to put any pieces together. Nor was the doctor he thought I should see. I've come to believe, these doctors send you to someone else, so you cannot say they didn't try to help you.
I called my G.I. Doc and left a message with his nurse, asking if there was a specific reason he had referred me to a colo-rectal surgeon, but she never returned my phone call. (And she always did in the past.) So, I'd say the G.I. Doc has given up, as well.
It appears to be PPMS, for which there is no treatment, so my D.O. is treating the symptoms. Not much point in a diagnosis, when there is no treatment anyway.
But, emotionally, I am ok with it.
I do not have many active hours a day, but I attend mass every morning; became a Eucharistic Minister a few months ago, and I have "Let go, and let God".
I actually feel, at peace, for the first time, in a long time.
Hugs,
Sheila
I never heard a word from either that doctor or the Coordinator. I sent him everything after the visit; he promised to "sift" through everything and see if he came up with anything, but apparently, he wasn't able to put any pieces together. Nor was the doctor he thought I should see. I've come to believe, these doctors send you to someone else, so you cannot say they didn't try to help you.
I called my G.I. Doc and left a message with his nurse, asking if there was a specific reason he had referred me to a colo-rectal surgeon, but she never returned my phone call. (And she always did in the past.) So, I'd say the G.I. Doc has given up, as well.
It appears to be PPMS, for which there is no treatment, so my D.O. is treating the symptoms. Not much point in a diagnosis, when there is no treatment anyway.
But, emotionally, I am ok with it.
I do not have many active hours a day, but I attend mass every morning; became a Eucharistic Minister a few months ago, and I have "Let go, and let God".
I actually feel, at peace, for the first time, in a long time.
Hugs,
Sheila
One problem that I have found is that no one knows anything about MS. I changed Neurologists about 2 years ago after I saw my new doctor at a seminar paid for by Rebif. He spoke about how his father had been diagnosed with MS so even though he was a neurologist who had specialized in sleep studies he had started taking more of an interest in MS.
I thought FINALLY someone who will understand. I was wrong. He just wants to send me for a sleep study for everything. Incontinence?? Sleep Study! Blurred vision? Sleep Study! Makes me pissed off to say the least.
Few weeks back I couldn't urinate at all. I called a urologist. They can get me in the end of september. I asked them what do I do in the meantime? Can I go to a regular doctor to maybe get a cath? The nurse assured me that probably no doctor would cath me that they would just say go to a urologist. And they can't see me for months!
I don't care if it puts my grandchildrens kids into debt I want universal health care now!
We can spend trillions of dollars to wage oil war or bail out the auto industry but I can't pee and oh thats too bad suffer in silence.
I too am very frustrated in the greed that has flooded the medical community.
I thought FINALLY someone who will understand. I was wrong. He just wants to send me for a sleep study for everything. Incontinence?? Sleep Study! Blurred vision? Sleep Study! Makes me pissed off to say the least.
Few weeks back I couldn't urinate at all. I called a urologist. They can get me in the end of september. I asked them what do I do in the meantime? Can I go to a regular doctor to maybe get a cath? The nurse assured me that probably no doctor would cath me that they would just say go to a urologist. And they can't see me for months!
I don't care if it puts my grandchildrens kids into debt I want universal health care now!
We can spend trillions of dollars to wage oil war or bail out the auto industry but I can't pee and oh thats too bad suffer in silence.
I too am very frustrated in the greed that has flooded the medical community.
Hi. I have have this problem for about 16-19years ago . It started with tiny electrical shocks in my buttocks than followed by my not being able to move the bowls on my own muscle actions I have to do this manually, sorry to be so graphic, but don't know of another way of saying it. bowls cause a great deal of pain in vaginal area and hard bladder spasms. I was told there is a Large Bundle of nerves in the middle of the two areas that connect them to each other and they are misfiring because of the MS. As you can guess, I have a very difficult time discussing this problem. The pain is awful when the spasms hit, and only very HIGH Doses of Morphine help at all. One of my Dr.s an Intestinal Oncologist said so far there isn't any treatment for this except to keep things soft with out being too lose not an easy task . My Upper & Lower Intestines are partially Paralysed so I have to use a heaping Tablespoon of BeneFiber Twice a Day and two full cap fulls of Miralax every day. My diet is now mostly Oatmeal with cooked Prunes and Raisins. Peanut Butter and Banana sandwiches,day in and day out. This is starting to help a tiny bit, but you need to realize how long I have been dealing with this. I am finding out that we are all very strong and we find ways to face and deal with problems most other people never think about EVER. It is so important for each of us to recognize how very strong we are to deal with MS day in and Day out, let alone try to explain it to our loved ones and Doctors.
Sheila, I know how hard it is to get a Dr. to listen to you let alone have them understand what you are telling them. For years I had Doctors tell me these things weren't connected to the MS, that I was just nervous and this is after I was DX,, But I knew it was all connected to the MS because of the spasms, and I had two Doctors who KNEW it was ALL due to the MS and where the Lesions were located on the spine and Brain.
Sorry to run on so long... Please Sheila don't stop looking for the help you need, There are some very good Dr. out there and you will find them if you Never give up... I will keep you in my Prayers Please let me know how you are doing.... I am here to support you and all of our wonderful group...even when I have no answers... Hugs coming to you on the winds{{{{~!~}}}
Sheila, I know how hard it is to get a Dr. to listen to you let alone have them understand what you are telling them. For years I had Doctors tell me these things weren't connected to the MS, that I was just nervous and this is after I was DX,, But I knew it was all connected to the MS because of the spasms, and I had two Doctors who KNEW it was ALL due to the MS and where the Lesions were located on the spine and Brain.
Sorry to run on so long... Please Sheila don't stop looking for the help you need, There are some very good Dr. out there and you will find them if you Never give up... I will keep you in my Prayers Please let me know how you are doing.... I am here to support you and all of our wonderful group...even when I have no answers... Hugs coming to you on the winds{{{{~!~}}}
Sheila,
I am going thru this bowel thing also. No feeling at all. I went to a GI doc,told me it was neurological and to take over the counter miralax, lots of water and fiber.
He did say he has about 30 ms patients who complain about the same thing,
He told me my bowels and anal sphincture (SP) were not paralized because I can pass gas. He did not seem empathic which anoyed me enough for my blood pressure to rise.
There doc do not truly understand what we are going thru. My Best best to you Linda
I am going thru this bowel thing also. No feeling at all. I went to a GI doc,told me it was neurological and to take over the counter miralax, lots of water and fiber.
He did say he has about 30 ms patients who complain about the same thing,
He told me my bowels and anal sphincture (SP) were not paralized because I can pass gas. He did not seem empathic which anoyed me enough for my blood pressure to rise.
There doc do not truly understand what we are going thru. My Best best to you Linda
Terry826,
I'm there with you, my dear!!! No insurance, no service.........hahaha My neuro wanted to do dozens of tests, but when he found out I wasn't insured he dropped me like a hot potato!!
Hang in there. I hope you can find a way to get all your tests and a dx. I just wanted you to know that I understand how frustrating it is, to not have health insurance, and be stuck lacking a way to get answers.
All the best,
doni
I'm there with you, my dear!!! No insurance, no service.........hahaha My neuro wanted to do dozens of tests, but when he found out I wasn't insured he dropped me like a hot potato!!
Hang in there. I hope you can find a way to get all your tests and a dx. I just wanted you to know that I understand how frustrating it is, to not have health insurance, and be stuck lacking a way to get answers.
All the best,
doni
Sheila, my sweet Friend, you know how I feel about all this and how I know how frustrating the drs can be. I was praying really hard that this dr would be the answer for you or at least be the one to send you to a dr that could help.
You know that I agree with you about what is causing your problem, but I just don't know how you can make the drs listen to you. It seems that the medical profession no longer looks at the patient as a person, only as an income. Guess that's why they don't like me......hahaha
You hang in there, girlfriend. You know you are in my thoughts and prayers everyday.
Love & Hugs,
doni
You know that I agree with you about what is causing your problem, but I just don't know how you can make the drs listen to you. It seems that the medical profession no longer looks at the patient as a person, only as an income. Guess that's why they don't like me......hahaha
You hang in there, girlfriend. You know you are in my thoughts and prayers everyday.
Love & Hugs,
doni
york
You have been on such a journey with these dude dr hun, i dont know what to say but pray for you that one day you will get answers, can you not get your internist to refer you to go in and have a load of tests done in one place instead of having different reports everywhere i dont know how it works in the USA being in the UK not having any luck myself been 2 and half yrs and on my last appointment coming up in august and then i think i will quit with dr and just live like this.
sam xx
You have been on such a journey with these dude dr hun, i dont know what to say but pray for you that one day you will get answers, can you not get your internist to refer you to go in and have a load of tests done in one place instead of having different reports everywhere i dont know how it works in the USA being in the UK not having any luck myself been 2 and half yrs and on my last appointment coming up in august and then i think i will quit with dr and just live like this.
sam xx
Hey Sheila,
Its good to see you pop up - I'm now going to have to go back and read all your old posts. Most everything you wrote probably was posted before I came along here. I'm Wondering about that problem with the anal spincter muscle - I get the twitch/shock/pain that runs all the way down to my toes sometimes. its the strangest symptom and was wondering if it had anything to do with my MS. You may have unlocked some clues for me.
Anyway, I'm glad you're back - and going to live it up. Take a day or two to celebrate *quitting* and then get back at finding the answers.
I hope we will see you around more often.
my best,
Lulu
Its good to see you pop up - I'm now going to have to go back and read all your old posts. Most everything you wrote probably was posted before I came along here. I'm Wondering about that problem with the anal spincter muscle - I get the twitch/shock/pain that runs all the way down to my toes sometimes. its the strangest symptom and was wondering if it had anything to do with my MS. You may have unlocked some clues for me.
Anyway, I'm glad you're back - and going to live it up. Take a day or two to celebrate *quitting* and then get back at finding the answers.
I hope we will see you around more often.
my best,
Lulu
Hi Sheila!!!!!
WTF!!!!!!!! I'm sorry, but after all you've been through, I had to hollar that. Sorry he was a big bust, really I am.
Hey - least put him on the spot and ask what he thinks of all the reports, collectively. Heck, it's the least he can do. And, if he has no clue, let him pass them to the other Dr. prior to any coordinating of your time.
It is nice to see you and I am VERY happy that you are up and about :)))))
(((nice to have you back hugs)))
shell
WTF!!!!!!!! I'm sorry, but after all you've been through, I had to hollar that. Sorry he was a big bust, really I am.
Hey - least put him on the spot and ask what he thinks of all the reports, collectively. Heck, it's the least he can do. And, if he has no clue, let him pass them to the other Dr. prior to any coordinating of your time.
It is nice to see you and I am VERY happy that you are up and about :)))))
(((nice to have you back hugs)))
shell
I refuse to pay another single doctor, that cannot give me the diagnosis, that I know, and my family knows, I need.
Thankfully, my PCP understands and has prescribed meds and increases, to at least keep the nerve pain in my spine, legs, and thighs, tolerable.
I mean, I am thankful to be out of bed.
My cousin was in a wheelchair 4 years after he finally got his diagnosis. But by that time, his MS was so bad, meds couldn't help him.
I guess I am following in his footsteps, so I am going to live each day, as though it may be the last day, I am walking.
I guess, I've been lucky, they haven't stuck a "crazy" label on my head. They have admitted this is neurological, but they just don't know what is happening to me.
I wouldn't wish this on anybody....but, I'd like these doctors to live inside our bodies for just a little while. Maybe then, they'd change the criteria and diagnose us sooner, so meds could slow things down.
I'm not asking for a cure.......but is a diagnosis too much to ask for? Apparently so.
Thankfully, my PCP understands and has prescribed meds and increases, to at least keep the nerve pain in my spine, legs, and thighs, tolerable.
I mean, I am thankful to be out of bed.
My cousin was in a wheelchair 4 years after he finally got his diagnosis. But by that time, his MS was so bad, meds couldn't help him.
I guess I am following in his footsteps, so I am going to live each day, as though it may be the last day, I am walking.
I guess, I've been lucky, they haven't stuck a "crazy" label on my head. They have admitted this is neurological, but they just don't know what is happening to me.
I wouldn't wish this on anybody....but, I'd like these doctors to live inside our bodies for just a little while. Maybe then, they'd change the criteria and diagnose us sooner, so meds could slow things down.
I'm not asking for a cure.......but is a diagnosis too much to ask for? Apparently so.
I'm right there with you sister! I just want to shout from the rooftoops right now but with no insurance I'm no more than a farm animal! It makes you wonder just how hard is it to fax reports, ect. evidently it takes months???? Then you get there & if they don't want to bother with you they stick a "crazy" label on your forehead & send you on your way to deal with it on your own!
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