Aa
Ongoing Validation
The topic of being "validated" has come up frequently as of late. I want you to know that it's something that I need, too. Since the beginning of this forum I have been very local about certain topics and little by little the mainstream of MS Experts has given me validation that I am right.
One of those thopics is that the MRI is only an approximate reflection of what is actually going on in the MS body. Still, we all have looked for evidence on the MRI when our symptoms take a nose dive. We, recently I have had the horrendous incontinence, a slowed gait, and difficulty rising out of a chair unaided by my hands. All of this despite being more active than I have been for 5 years or more.
Last Saturday I had another full 3T set of MRIs. Today I got a call from my neuro's Nurse Practitioner. He brought her on and clearly has taught her his philosophy, since the other doc left. She called me today to tell me that my MRIs are unchanged. (She reads the MRIs herself!) Now, since they found my first 7 lesions in 2007, there has been no appreciable change, and I have been off a DMD for over a year. Even my Urodynamic studies were normal.
I find it totally frustrating that my testing does not show the changes when it feels like I am going downhill paralleling Bodie Miller. My Uro-G was not at all put off by the normal testing. She said that the MS bladder doesn't behave in ANY predictable way. The NP today said that, although they were looking for a new enhancing lesion - especially in the thoracic spine - to account for my worsening urinary problems, she wasn't bothered or made suspicious by not seeing one. She said the MRI is an inaccurate tool. It doesn't show "most" of what is going on in the body with MS. When I commented on the fact that my MRI hasn't changed in years, she said, "Well, it does show that you have significant spinal cord disease and we know that existing lesions continue to cause symptoms and often worsening symptoms without ever changing in size."
I think it is important to keep reminding ourselves that the truth of our disease lies in our experience with it - not in some external test result. Our symptoms determine a relapse NOT the appearance of the MRI. Our symptoms determine the stage of our disease, NOT the MRI. Our symptoms determine our suffering - NOT the MRI.
We must continue to reassure and teach people that our doctors must LISTEN to us and LOOK at us. And, above all, they must believe us. If they don't, we need to search until we find a doctor that does. That is why many of us are on our third, fifth, or tenth docs.
Quix
One of those thopics is that the MRI is only an approximate reflection of what is actually going on in the MS body. Still, we all have looked for evidence on the MRI when our symptoms take a nose dive. We, recently I have had the horrendous incontinence, a slowed gait, and difficulty rising out of a chair unaided by my hands. All of this despite being more active than I have been for 5 years or more.
Last Saturday I had another full 3T set of MRIs. Today I got a call from my neuro's Nurse Practitioner. He brought her on and clearly has taught her his philosophy, since the other doc left. She called me today to tell me that my MRIs are unchanged. (She reads the MRIs herself!) Now, since they found my first 7 lesions in 2007, there has been no appreciable change, and I have been off a DMD for over a year. Even my Urodynamic studies were normal.
I find it totally frustrating that my testing does not show the changes when it feels like I am going downhill paralleling Bodie Miller. My Uro-G was not at all put off by the normal testing. She said that the MS bladder doesn't behave in ANY predictable way. The NP today said that, although they were looking for a new enhancing lesion - especially in the thoracic spine - to account for my worsening urinary problems, she wasn't bothered or made suspicious by not seeing one. She said the MRI is an inaccurate tool. It doesn't show "most" of what is going on in the body with MS. When I commented on the fact that my MRI hasn't changed in years, she said, "Well, it does show that you have significant spinal cord disease and we know that existing lesions continue to cause symptoms and often worsening symptoms without ever changing in size."
I think it is important to keep reminding ourselves that the truth of our disease lies in our experience with it - not in some external test result. Our symptoms determine a relapse NOT the appearance of the MRI. Our symptoms determine the stage of our disease, NOT the MRI. Our symptoms determine our suffering - NOT the MRI.
We must continue to reassure and teach people that our doctors must LISTEN to us and LOOK at us. And, above all, they must believe us. If they don't, we need to search until we find a doctor that does. That is why many of us are on our third, fifth, or tenth docs.
Quix
Yes!
The only 'official' lesion on my brain MRI was in the right cerebellum. That was the only one my neuro would look at. But I had/have so many symptoms that obviously the MRI isn't showing the whole picture. My neuro drives me crazy, because sometimes he acts as if he knows what's going on, and sometimes he acts as if he just graduated from Crackerjack University. He acknowledges that there's something going on in my spine, but he's the one who sent me for a .7 Tesla thoracic MRI.
Quix, what's the word on atrophy? Have they done a black pixel count on the CSF spaces in the MRI?
The only 'official' lesion on my brain MRI was in the right cerebellum. That was the only one my neuro would look at. But I had/have so many symptoms that obviously the MRI isn't showing the whole picture. My neuro drives me crazy, because sometimes he acts as if he knows what's going on, and sometimes he acts as if he just graduated from Crackerjack University. He acknowledges that there's something going on in my spine, but he's the one who sent me for a .7 Tesla thoracic MRI.
Quix, what's the word on atrophy? Have they done a black pixel count on the CSF spaces in the MRI?
I agree with you on this one, but then I agree with you most of the time..hahaha .. it's not easy when there are no changes and your body is feeling different/worse.
take care
wobbly
take care
wobbly
Thanks for posting this. I too feel like my symptoms/state is worsening despite the fact that my 3t mri doesnt show a large amount of lesion. (pics under my photos) I sometimes look at these mri's and think to my self that there must be somthing else going on to make me feel so horrible! I see other peoples mris and theirs seem much worse. But my body is saying different things. I battle every day not knowing if I am going to make it thru the work day. I struggle to get up the stairs at home at night , and so on...I guess I needed to read this tonite Quix. Thanks
Thanks, Jen and Wobbly.
I just reread my post and am aghast at all the typos in it. It's so great being in a forum where we understand that failure to control one's fingers might well be the norm - or that failure to recognize a typo when you make one is quite normal, too.
Atrophy? Do you mean my own atrophy or the science of looking for it and measuring it all along in people's disease course?
As far as me, I don't think it shows up in my MRI. However, my OCT did show measureable atrophy in the left optic nerve and borderline on the right. This has been shown to parallel the brain atrophy during the longterm in MS. Even though I have never had clinical (symptoms and signs) Optic Neuritis, my optic nerves show that I have had damage from it at some time. Again, the test and the symptoms don't match, but this time in the opposite direction.
For the newbies - OCT (Optic Coherence Tomography) is a test that can measure the thickness of the outer most nerve fiber layer of the optic disc. This shows thinning, or atrophy, as the MS marches on. It is being widely used to mark the progress of CNS destruction in MS instead of doing the more difficult and far more expensive MRIs so often.
Optic Neuritis can occur subclinically (below the symptoms) such that it can occur without any symptoms or signs to alert the person with MS that it is happening. That is why it is so ridiculous for a doctor to deny that ON is occuring when a patient doesn't have all the clinical symptoms and signs.
Symptom = something felt and complained of by the patient. Subjective (example - pain)
Sign = an Objective finding on the physical exam seen by the doctor. (example - hyperactive reflexes)
Yeah, Wobbly, even though I have doctors that believe me wholeheartedly, I want objective proof.
Quix
I just reread my post and am aghast at all the typos in it. It's so great being in a forum where we understand that failure to control one's fingers might well be the norm - or that failure to recognize a typo when you make one is quite normal, too.
Atrophy? Do you mean my own atrophy or the science of looking for it and measuring it all along in people's disease course?
As far as me, I don't think it shows up in my MRI. However, my OCT did show measureable atrophy in the left optic nerve and borderline on the right. This has been shown to parallel the brain atrophy during the longterm in MS. Even though I have never had clinical (symptoms and signs) Optic Neuritis, my optic nerves show that I have had damage from it at some time. Again, the test and the symptoms don't match, but this time in the opposite direction.
For the newbies - OCT (Optic Coherence Tomography) is a test that can measure the thickness of the outer most nerve fiber layer of the optic disc. This shows thinning, or atrophy, as the MS marches on. It is being widely used to mark the progress of CNS destruction in MS instead of doing the more difficult and far more expensive MRIs so often.
Optic Neuritis can occur subclinically (below the symptoms) such that it can occur without any symptoms or signs to alert the person with MS that it is happening. That is why it is so ridiculous for a doctor to deny that ON is occuring when a patient doesn't have all the clinical symptoms and signs.
Symptom = something felt and complained of by the patient. Subjective (example - pain)
Sign = an Objective finding on the physical exam seen by the doctor. (example - hyperactive reflexes)
Yeah, Wobbly, even though I have doctors that believe me wholeheartedly, I want objective proof.
Quix
Jen, I agree that it is beyond all reason that a doc would use an MRI of such tiny power in the search for lesions that may be only a few millimeters in size. What was he thinking??
Validation is so important. I learned quite a lesson recently when my medical condition was being questioned.
I had a situation happen when back in April I went to see my MS neuro for help with severe weakness and breathing problems. He examined me and directed me to go to the ER and be prepared for a hospital stay. I decided to go to a local hospital rather than the one he is affiliated with. Big mistake.
While hospitalized, I hadn't occurred to me that my MS dx was being questioned. One of the doctors mentioned that the hospital neuro was challenging the dx. I only saw this two times 2 years ago during a previous hospital stay. I had no idea how to handle this. I ended up confronting this neuro about it and found out that she was relying on old information and a discussion with a colleague in her practice whose care I was under until I fired him when I realized he wasn't interested in helping me.
I told my neuro about this when I had my post-hospital follow-up last week. At first he was seemed angry about it, and then apologized for this doctor saying that doctor's don't always believe patients until they see the proof. He went back over with me on how he came to the diagnosis and even gave me a copy of his notes and my test results that helped back up his diagnosis to keep in case this ever comes up again. He did say that I am not a typical case, but that he had no doubt about his dx then or now.
The point I thnk Quix is making here is that we need to have doctor's that trust and believe in us. We need to have a doctor who sees an atypical case and will step outside the box and be willing to use his/hre years of experience and knowledge to do the right by the patients so we can get the care and treatment we need. If test results don't come out looking like there is a problem yet there is a valid problem, then we need that doctor to push aside the results and help us.
Validation is a good thing, but a doctor willing to look past a lab result is a great thing.
Quix, you have found a wonderful and caring medical team. We should all be so fortunate. Take care and hope they find a med that will get this challenging symptom under control.
Love and many hugs,
Julie
I had a situation happen when back in April I went to see my MS neuro for help with severe weakness and breathing problems. He examined me and directed me to go to the ER and be prepared for a hospital stay. I decided to go to a local hospital rather than the one he is affiliated with. Big mistake.
While hospitalized, I hadn't occurred to me that my MS dx was being questioned. One of the doctors mentioned that the hospital neuro was challenging the dx. I only saw this two times 2 years ago during a previous hospital stay. I had no idea how to handle this. I ended up confronting this neuro about it and found out that she was relying on old information and a discussion with a colleague in her practice whose care I was under until I fired him when I realized he wasn't interested in helping me.
I told my neuro about this when I had my post-hospital follow-up last week. At first he was seemed angry about it, and then apologized for this doctor saying that doctor's don't always believe patients until they see the proof. He went back over with me on how he came to the diagnosis and even gave me a copy of his notes and my test results that helped back up his diagnosis to keep in case this ever comes up again. He did say that I am not a typical case, but that he had no doubt about his dx then or now.
The point I thnk Quix is making here is that we need to have doctor's that trust and believe in us. We need to have a doctor who sees an atypical case and will step outside the box and be willing to use his/hre years of experience and knowledge to do the right by the patients so we can get the care and treatment we need. If test results don't come out looking like there is a problem yet there is a valid problem, then we need that doctor to push aside the results and help us.
Validation is a good thing, but a doctor willing to look past a lab result is a great thing.
Quix, you have found a wonderful and caring medical team. We should all be so fortunate. Take care and hope they find a med that will get this challenging symptom under control.
Love and many hugs,
Julie
Sure thing, MSChrise. I know that people begin to doubt themselves as well as some having doctors who doubt them also. None of us are immune to it.
I'm glad you posted. Remember, we have a whole group of people here to support you if you'll let us.
Take care,
Quix
I'm glad you posted. Remember, we have a whole group of people here to support you if you'll let us.
Take care,
Quix
I agree with what you said. Very eloquently put as usual. It is great to have our own Doctor on the forum.
Alex
Alex
Quix,
Thanks for the wonderful post. I think I am in the same boat as you in that I am getting worse but nothing is showing up in the tests. Just since January I have developed major vertigo problems, bladder and bowel problems, and a weak right leg with foot drop.
PS I read your post twice and still can't find any typos. :)
Dennis
Thanks for the wonderful post. I think I am in the same boat as you in that I am getting worse but nothing is showing up in the tests. Just since January I have developed major vertigo problems, bladder and bowel problems, and a weak right leg with foot drop.
PS I read your post twice and still can't find any typos. :)
Dennis
I like to have objective information and results too. That would make is so much easier to validate our symptoms. Why does this have to be so hard some times.
Julie, your story is very interesting. When a hospitalist questions a diagnosis, it is their duty to contact the current primary doc (in this case your neuro) and get the real story before unmaking the wheel. So often we see a person's whole diagnosis thrown out by irrespnsible doctors who fail to get all the facts before they act.
I call this practicing medicine the Sea Gull Method. They fly in, swoop around making a lot of noise, crap on evreything and fly away.
Quix
I call this practicing medicine the Sea Gull Method. They fly in, swoop around making a lot of noise, crap on evreything and fly away.
Quix
That made me laugh, thanks. This situation had the "Sea Gull Method" written all over it. :)
Regarding the lack of communication between the two doctors, this hospitalist neuro told me she tried to contact my neuro, but that he didn't return her call. When I told my neuro what she said he said he never got a message from her. He was pretty emphatic about this and he is actually a pretty calm guy normally. He said they have an email alert system with other doctors and had she used that system he would have gotten her message right away and woudl have called her back. I don't know what happened and don't care at this point, what's done is done. Thankfully it didn't affect the treatment I got - this time. But, I wish I had known about it earlier so I could have nipped it in the bud from the beginning.
Lessons learned is what I am taking away from this experience. It hopefully won't happen again.
Julie
Regarding the lack of communication between the two doctors, this hospitalist neuro told me she tried to contact my neuro, but that he didn't return her call. When I told my neuro what she said he said he never got a message from her. He was pretty emphatic about this and he is actually a pretty calm guy normally. He said they have an email alert system with other doctors and had she used that system he would have gotten her message right away and woudl have called her back. I don't know what happened and don't care at this point, what's done is done. Thankfully it didn't affect the treatment I got - this time. But, I wish I had known about it earlier so I could have nipped it in the bud from the beginning.
Lessons learned is what I am taking away from this experience. It hopefully won't happen again.
Julie
I have nothing to add to this right now - I just want to tell you this has made excellent reading. Thanks for all the thoughtfulness put into this and all the replies. I enjoyed the laughs, too.
Lu
Lu
Thanks for posting this Quix. Your timing is perfect, but then again what are the odds of finding someone here who can relate lol!
I am reading with one eye closed so if you had typos I didn't see em with the good eye.
So glad to be part of this amazing group
D
I am reading with one eye closed so if you had typos I didn't see em with the good eye.
So glad to be part of this amazing group
D
This posr is one to save and look back on whenever the need for validation gets stronger within. While I am so sorry that we all need this, I also think this forum really really is what keeps a lot of us going.
Thanks, quix and everyone else, too!
Addi
Thanks, quix and everyone else, too!
Addi
Thanks Quix and everyone I have struggled so much with this very issue. I feel partly responsible because I have tried so hard over the last 20 years to deny this disease. After all these years you would think I would have educated myself better. I am in some ways really grateful to have taken the approach that I have.
I have so many things I want to say here. This topic is a hot button for me and stirs up so many emotions and so much fear. I have been treated really badly by the medical community- at times. Other times they have been wonderful.
The fact that any test is used as a barometer for how we should or shouldn't be feeling really disturbs me. This disease is way to cunning and creative to fit into and mold or pattern.
There is no doubt any longer about my dx. but there was a time when I was treated as if I was a liar, a drug addict, a con-woman. I have been poked, prodded, hospitalized and isolated -Literally put in isolation after a spinal tap and kept there for over a week.
I have been humiliated and bullied into doing tests I know I don't need- again. All because one doctor thinks that all the others have been mistaken. Once the MRI comes back they always excuse themselves and their behavior with the same excuses My symptoms aren't typical of MS.
I have a difficult time just getting straight definitive answers most of the time. Which I understand due to the nature of the disease and for that fact alone I think validation for us shall always be fleeting- but oh so very important!
Then I get on this site and discover that in-fact my symptoms are completely typical of an MS patient. Validation for me sometimes works far better than any medicine. Just knowing that I am not alone and that it isn't all in my head helps more than I ever thought possible.
I don't allow much testing anymore. I don't measure anymore. I told my doctor after my last MRI that I didn't want to go over it with him. I am better because I feel better. I am worse when I feel worse. I find that for me less is more. Less time with the doctor. Less time with the medicines. Less time spent analyzing whether I should actually be feeling what I am feeling. Less time living in the disease leaves me with More time to just live. More time to really enjoy what may very well be The Best Day for a while to come.
Sorry I kind of rambled on here but this subject means alot to me. Thank you so much for bringing it up!
I have so many things I want to say here. This topic is a hot button for me and stirs up so many emotions and so much fear. I have been treated really badly by the medical community- at times. Other times they have been wonderful.
The fact that any test is used as a barometer for how we should or shouldn't be feeling really disturbs me. This disease is way to cunning and creative to fit into and mold or pattern.
There is no doubt any longer about my dx. but there was a time when I was treated as if I was a liar, a drug addict, a con-woman. I have been poked, prodded, hospitalized and isolated -Literally put in isolation after a spinal tap and kept there for over a week.
I have been humiliated and bullied into doing tests I know I don't need- again. All because one doctor thinks that all the others have been mistaken. Once the MRI comes back they always excuse themselves and their behavior with the same excuses My symptoms aren't typical of MS.
I have a difficult time just getting straight definitive answers most of the time. Which I understand due to the nature of the disease and for that fact alone I think validation for us shall always be fleeting- but oh so very important!
Then I get on this site and discover that in-fact my symptoms are completely typical of an MS patient. Validation for me sometimes works far better than any medicine. Just knowing that I am not alone and that it isn't all in my head helps more than I ever thought possible.
I don't allow much testing anymore. I don't measure anymore. I told my doctor after my last MRI that I didn't want to go over it with him. I am better because I feel better. I am worse when I feel worse. I find that for me less is more. Less time with the doctor. Less time with the medicines. Less time spent analyzing whether I should actually be feeling what I am feeling. Less time living in the disease leaves me with More time to just live. More time to really enjoy what may very well be The Best Day for a while to come.
Sorry I kind of rambled on here but this subject means alot to me. Thank you so much for bringing it up!
As always your post is thought provoking and appropriately sensitive.
As you know my dx was a very long time coming and left me with enormous doubts of my own. Thankfully the medics I deal with have no doubt as it seems that the neuro I initially tore apart is extremley cautious and will not dx until he is 110% positive,
As next week is my 12 month anniversary of positive dx after 20 years of sx, I asked my MS Nurse if they would do another MRI - her reaction was startling - "what for?" she asked, "It won't tell us how you are feeling or how the illness is progressing - only you know that". I could have kissed her after everything I have been through.
I know we have different approaches here in the UK but I also know that I am lucky to have an enlightened team here helping me now. That in itself validates my current situation.
Thanks again Quix for these thoughts
Pat x
As you know my dx was a very long time coming and left me with enormous doubts of my own. Thankfully the medics I deal with have no doubt as it seems that the neuro I initially tore apart is extremley cautious and will not dx until he is 110% positive,
As next week is my 12 month anniversary of positive dx after 20 years of sx, I asked my MS Nurse if they would do another MRI - her reaction was startling - "what for?" she asked, "It won't tell us how you are feeling or how the illness is progressing - only you know that". I could have kissed her after everything I have been through.
I know we have different approaches here in the UK but I also know that I am lucky to have an enlightened team here helping me now. That in itself validates my current situation.
Thanks again Quix for these thoughts
Pat x
MY neuro definitley needs validation from test results
From my first visit he suggested I had MS but as the test result come in he has changed his mind. Over the last 9 months I have had- LP, 2x MRI (1.5T ), SSEP, EEG & Brainstem potentails. The only things that showed was a solitary T2 Hyperintense focus in the right parietal subcortical white matter which is non specific. and from the clinical examination I had brisk reflexes. And a questionable reaction on my right foot reflex.
It all started while visiting San Francisco I fell off a segway and broke my elbow it was only a minor break but about 3 weeks after doing it my fingers started to go numb/tingle, a few weeks past and it was my whole arm, a couple more weeks, my head was getting the same feeling, I was also incredibly tired, and had start to twitch. I had been told about 6 months ago that the symptoms I was experiencing were not connected to the elbow break.
By the end of January all my limbs where tingling and had a feeling of intense preasure. By April my right eyelid was drooping I have had a preasure like headache on the right side of my head since christmas. Just to add to it all this last couple of weeks the tingling is happening in my private parts and around my neck is a feeling like your wearing a tight scarf. Over the 9 months I have had several bouts of constipation which I have not had before and also a change in my water works!
With no answer to the situation, the neuro said he would refer me to have a general medical assesment. My neuro had told me not to hold my breath on this (he has already told me he does not know what is causing my problems, but was sure it was neurological) so my expectations were not high.
I had the blood tests done for which I do not have the results yet. I was impressed with the Dr. he had actually done some backgroud research before I entered the room, he had spent time talking to my neuro and knew what tests I had had etc... He asked me to run through the whole story again and then told mehe thougth I had RSD-"Reflex sympathetic dystrophy" or CRPS-" Complex regional pain syndrome"(they are the same thing). He has given me Gabapentin but has explained it may take some experimenting to find a way of controlling it. I knew nothing about the condition so was really stuck for any questions I should ask, in honesty he had completley caught me off guard. I nearly fell off the chair when he said he would right it down so I can google it!
Having done a bit of googling, although there are a few similarities in the symptoms listed, but I have to say I'm not convinced that this is the true answer,the only symtoms that seem to match are the burning sensation which I get in all my limbs, and the twitching/muscle spasms and the fact I had broken my elbow. But I do not get change of colour or change in skin. Nor am I hyper sensitive to touch. I am however pleased that I have been given some medication that may help.
I have to take 300mg of Gabapentin 3 times a day starting off with a build up of this. Day 1 one capsule Day 2 two, and day 3 the full 3 capsules. The thing is I think i would be given the same drugs if it is PPMS which has always been my suspicion. I hope the Gabapentin will help. So far this has been 9 months of slow progression I don't think the Gabapentin will stop that, I believe it will releve the pain although I've taken it for 2 weeks now and there has been no improvement.
I wondered whether there is anyone that has been mis diagonosed with RDS before MS? I am now concerned that I will be signed off the neuro and will not have any more MRI's and any new symptoms will be put down to RSD.
My neuro seems to need validation. I am wondering if I should get a 3T MRI done of neck and spine, the closest 3T MRI is 3 hour away and not NHS, I think I would have to pay about £900. But if the neuro ordered it then I'm pretty sure our insurance would cover it. Is it worth pushing for or should I accept the Dx RDS?
I see the neuro again in 2 weeks when I think he'll sign me off. and the General medical Dr the week after.
Sorry for such a long post.
From my first visit he suggested I had MS but as the test result come in he has changed his mind. Over the last 9 months I have had- LP, 2x MRI (1.5T ), SSEP, EEG & Brainstem potentails. The only things that showed was a solitary T2 Hyperintense focus in the right parietal subcortical white matter which is non specific. and from the clinical examination I had brisk reflexes. And a questionable reaction on my right foot reflex.
It all started while visiting San Francisco I fell off a segway and broke my elbow it was only a minor break but about 3 weeks after doing it my fingers started to go numb/tingle, a few weeks past and it was my whole arm, a couple more weeks, my head was getting the same feeling, I was also incredibly tired, and had start to twitch. I had been told about 6 months ago that the symptoms I was experiencing were not connected to the elbow break.
By the end of January all my limbs where tingling and had a feeling of intense preasure. By April my right eyelid was drooping I have had a preasure like headache on the right side of my head since christmas. Just to add to it all this last couple of weeks the tingling is happening in my private parts and around my neck is a feeling like your wearing a tight scarf. Over the 9 months I have had several bouts of constipation which I have not had before and also a change in my water works!
With no answer to the situation, the neuro said he would refer me to have a general medical assesment. My neuro had told me not to hold my breath on this (he has already told me he does not know what is causing my problems, but was sure it was neurological) so my expectations were not high.
I had the blood tests done for which I do not have the results yet. I was impressed with the Dr. he had actually done some backgroud research before I entered the room, he had spent time talking to my neuro and knew what tests I had had etc... He asked me to run through the whole story again and then told mehe thougth I had RSD-"Reflex sympathetic dystrophy" or CRPS-" Complex regional pain syndrome"(they are the same thing). He has given me Gabapentin but has explained it may take some experimenting to find a way of controlling it. I knew nothing about the condition so was really stuck for any questions I should ask, in honesty he had completley caught me off guard. I nearly fell off the chair when he said he would right it down so I can google it!
Having done a bit of googling, although there are a few similarities in the symptoms listed, but I have to say I'm not convinced that this is the true answer,the only symtoms that seem to match are the burning sensation which I get in all my limbs, and the twitching/muscle spasms and the fact I had broken my elbow. But I do not get change of colour or change in skin. Nor am I hyper sensitive to touch. I am however pleased that I have been given some medication that may help.
I have to take 300mg of Gabapentin 3 times a day starting off with a build up of this. Day 1 one capsule Day 2 two, and day 3 the full 3 capsules. The thing is I think i would be given the same drugs if it is PPMS which has always been my suspicion. I hope the Gabapentin will help. So far this has been 9 months of slow progression I don't think the Gabapentin will stop that, I believe it will releve the pain although I've taken it for 2 weeks now and there has been no improvement.
I wondered whether there is anyone that has been mis diagonosed with RDS before MS? I am now concerned that I will be signed off the neuro and will not have any more MRI's and any new symptoms will be put down to RSD.
My neuro seems to need validation. I am wondering if I should get a 3T MRI done of neck and spine, the closest 3T MRI is 3 hour away and not NHS, I think I would have to pay about £900. But if the neuro ordered it then I'm pretty sure our insurance would cover it. Is it worth pushing for or should I accept the Dx RDS?
I see the neuro again in 2 weeks when I think he'll sign me off. and the General medical Dr the week after.
Sorry for such a long post.
THANK YOU for posting this. My urodynamic testing results were also normal. Clearly something is going on down there, even if their tests don't show it. It's nice to know I'm not crazy.
I have found all the posts on this thread very interesting and thought I would just add my penniesworth to take my mind off the really tough day I am having..but nothing to do with MS..
I also like validation, answers and find dealiing with the unknown very hard. I have known for several years that something was not right with my body but just thought I had a weak immune system. However when I had 2 mri scans within a month both showing changes to lesions and abnormal VEP's I still found it hard to come to terms with my diagnosis.
So for me I had the validation and evidence almost before my first serious relapse...which was enough to convince me that my MS was real.
I kinda feel as if I am lucky to have been given my diagnosis so quickly and although I have only met my neuro once, I liked him and have faith in him that he knows his stuff as he is one of the leading MS research consultants in SW England. Finding a good neuro seems to be something that many people in USA have probems with. However who wants this dx...I don't really feel lucky or brave at all.
Anyhow just wanted to say that I appreciated your thoughtful post Quix and I strongly believe that we all know our bodies better than anyone. There is something in there about feeling beleived and trusted by others and how hurtful it can be when we are suffering to not have the support of our doctors.
One of the reasons I am going on the drug trial is that as a result of all the testing I will have to go through I hope I will get further validations and a baseline of my MS. I go for the screening next week and will update on forum and in journal
I did not spot any typos and realise that my typing has deteriorated a great deal recently but hey hoping most of you are in the same position!
OT.....my crap day...still do not know if my husband is getting back from Afghanistan tomorrow, Friday or Saturday and feel irritated with the army for working my huband 14-16 hours a day without a break since March and for communicating so badly and delaying bringing him home to our family.
Also problems with my 18 year old son with Asperger Syndrome and feeling the strain of having to deal with stuff with kids without my other half.
:((( Hopefully next time I post I will be in a different mood :)
I feel this is a rather disjointed post but thanks for hanging in there till the end.
Sarah
I also like validation, answers and find dealiing with the unknown very hard. I have known for several years that something was not right with my body but just thought I had a weak immune system. However when I had 2 mri scans within a month both showing changes to lesions and abnormal VEP's I still found it hard to come to terms with my diagnosis.
So for me I had the validation and evidence almost before my first serious relapse...which was enough to convince me that my MS was real.
I kinda feel as if I am lucky to have been given my diagnosis so quickly and although I have only met my neuro once, I liked him and have faith in him that he knows his stuff as he is one of the leading MS research consultants in SW England. Finding a good neuro seems to be something that many people in USA have probems with. However who wants this dx...I don't really feel lucky or brave at all.
Anyhow just wanted to say that I appreciated your thoughtful post Quix and I strongly believe that we all know our bodies better than anyone. There is something in there about feeling beleived and trusted by others and how hurtful it can be when we are suffering to not have the support of our doctors.
One of the reasons I am going on the drug trial is that as a result of all the testing I will have to go through I hope I will get further validations and a baseline of my MS. I go for the screening next week and will update on forum and in journal
I did not spot any typos and realise that my typing has deteriorated a great deal recently but hey hoping most of you are in the same position!
OT.....my crap day...still do not know if my husband is getting back from Afghanistan tomorrow, Friday or Saturday and feel irritated with the army for working my huband 14-16 hours a day without a break since March and for communicating so badly and delaying bringing him home to our family.
Also problems with my 18 year old son with Asperger Syndrome and feeling the strain of having to deal with stuff with kids without my other half.
:((( Hopefully next time I post I will be in a different mood :)
I feel this is a rather disjointed post but thanks for hanging in there till the end.
Sarah
Thank you for your post!
Seven years and still no DX. My last test was EMG/NCS to rule out carpal tunnel, which it did. He did the EMG because a P.A. said I had carpal tunnel. My neuro found I had a positive sign with the hammer on my right wrist. I also have continuous thumb-in-fist closed hand feature.
I go back in July for my 8 week visit, but NO VALIDATION of any kind, not even a possible, probable, nothing.
As a medical transcriptionist now for almost 30 years, home-based thankfully, the intention tremors in my hands are causing me HUGE problems. If I cannot type, I cannot make a living.
Without a diagnosis, if I were not able to work, how could I possibly even think about getting disability. I would be turned down.
I am a self-employed independent contractor for a local hospital, which means I am paid on production. If I cannot type, I cannot make a living.
terri
Seven years and still no DX. My last test was EMG/NCS to rule out carpal tunnel, which it did. He did the EMG because a P.A. said I had carpal tunnel. My neuro found I had a positive sign with the hammer on my right wrist. I also have continuous thumb-in-fist closed hand feature.
I go back in July for my 8 week visit, but NO VALIDATION of any kind, not even a possible, probable, nothing.
As a medical transcriptionist now for almost 30 years, home-based thankfully, the intention tremors in my hands are causing me HUGE problems. If I cannot type, I cannot make a living.
Without a diagnosis, if I were not able to work, how could I possibly even think about getting disability. I would be turned down.
I am a self-employed independent contractor for a local hospital, which means I am paid on production. If I cannot type, I cannot make a living.
terri
WOW!!!!!! So well said, and validation is essential. We seek proof in pictures sometimes, or substantial evidence for some issues - when what we really need is those who know what they are looking at, and what it means!
This write up means so much Doc Q. Thank you so very much!
-Shell
This write up means so much Doc Q. Thank you so very much!
-Shell
I just want to throw in for everyone, I got my MS dx super easily once I finally heard the word MS. The stuff from years before that was never dx'd bothered me but I was too young to care too much. So when my arm went numb and I got my MRI's they lit up like a Christmas tree.
With 2 seperate attacks within 2 months and the MRI my dx was easily confirmed by my PCP, 2 neuros and and opthamologist., Now a year later, I am being told that my sx's may not be from MS. We know I have MS. Even the LP they decided to do said more than 5 o bands. There is no doubt in my mind or in my neuro's mind that I have MS, but he thinks the excessive list of sx's I have are from something else.
Now I am off to UCSF to get an opinion from an MS specialist. My Dr is reaching sooo hard to find a way to get a more "fixable" answer for my complaints. He is sure they are real, but almost feels bad that he can't help make them better.
Every specialist (eyes, ortho, etc) has said "sorry, your MS is causing this". So I keep getting more and more "validation" of my MS sx's to the point where I am starting to think some of it is in my head. It is so hard with this disease to have all these issues and pain and not be able to pinpoint the cause.
Thanks again Quix for reminding us that it is for real and we are not alone.
D
With 2 seperate attacks within 2 months and the MRI my dx was easily confirmed by my PCP, 2 neuros and and opthamologist., Now a year later, I am being told that my sx's may not be from MS. We know I have MS. Even the LP they decided to do said more than 5 o bands. There is no doubt in my mind or in my neuro's mind that I have MS, but he thinks the excessive list of sx's I have are from something else.
Now I am off to UCSF to get an opinion from an MS specialist. My Dr is reaching sooo hard to find a way to get a more "fixable" answer for my complaints. He is sure they are real, but almost feels bad that he can't help make them better.
Every specialist (eyes, ortho, etc) has said "sorry, your MS is causing this". So I keep getting more and more "validation" of my MS sx's to the point where I am starting to think some of it is in my head. It is so hard with this disease to have all these issues and pain and not be able to pinpoint the cause.
Thanks again Quix for reminding us that it is for real and we are not alone.
D
Greeting to my friend,
I always find your posts very helpful & most time regardless of your situation you sense of humor is extraordinary.
Hope You Keep smiling :-D
John..
I always find your posts very helpful & most time regardless of your situation you sense of humor is extraordinary.
Hope You Keep smiling :-D
John..
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