Guest guest Posted April 22, 2005 Report Share Posted April 22, 2005 Hi Kathy, I was diagnosed 1995, MRI scan was negative,all other tests were negative including a spinal tap. Six weeks later I had a milogram[ dye in the spine] at the same time they did another spinal tap which apparently was positive, so I have MS but no lesions. My neuro did say that as MS progresses, should I have another MRI probably lesions would show up.Have you had a spinal tap? Also I think you should investigate the possibility of syndrome a blood disorder which mimics MS. It certainly is worth investigation as with the correct blood thinning medication, the MS syptoms gradually disappear. Hope this is helpful. Regards, . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2005 Report Share Posted April 22, 2005 They said my Husband didn't have MS after several MRI's and no lesions said it was a pinched nerve in his neck at C-3 ... Finally my husband insisted on a spinal tap.... and it came back positive for MS. Only then did he start getting treatment. I know of 1 other: A gal with all the classic MS symptoms, which neuros down in New Zealand says mimics MS, but without lesions on her MRI they won't definitively diagnose it. She's really frustrated... From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of kathy lintzenichSent: Friday, April 22, 2005 2:35 PMlow dose naltrexone Subject: [low dose naltrexone] MS with no lesions How many of you know of people who have MS with no lesions? I am asking because I was dx in 1999. Two years later after alternative therapy they were gone never to have returned but I still have episodes. My last neuro says I don't have ms. He says if I did there would be lesions in the brain. I don't believe him. Can I have some feedback here? From being on this chatroom, I feel we are more up to date than THE EXPERTS. THANKS, Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2005 Report Share Posted April 22, 2005 2 years since symptoms began... Over Thanksgiving 04' he got worst.. they did more MRI's nothing showed up... He had to insist on a spinal tap... Doctor tried to discourage the test said he didn't need it and came right out and said to my husband you have a pinched nerve. **************** How many years did this diagnosis take? This has been going on with me for a total of 12 years. I would like some kind of resolution. In my mind, body, and spirit I believe I have MS and wouldn't wish that diagnosis on anyone. My symptoms manifest itself as such but the doctors say no. Re: [low dose naltrexone] MS with no lesions They said my Husband didn't have MS after several MRI's and no lesions said it was a pinched nerve in his neck at C-3 ... Finally my husband insisted on a spinal tap.... and it came back positive for MS. Only then did he start getting treatment. I know of 1 other: A gal with all the classic MS symptoms, which neuros down in New Zealand says mimics MS, but without lesions on her MRI they won't definitively diagnose it. She's really frustrated... From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of kathy lintzenichSent: Friday, April 22, 2005 2:35 PMlow dose naltrexone Subject: [low dose naltrexone] MS with no lesions How many of you know of people who have MS with no lesions? I am asking because I was dx in 1999. Two years later after alternative therapy they were gone never to have returned but I still have episodes. My last neuro says I don't have ms. He says if I did there would be lesions in the brain. I don't believe him. Can I have some feedback here? From being on this chatroom, I feel we are more up to date than THE EXPERTS. THANKS, Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2005 Report Share Posted April 22, 2005 In a message dated 4/22/2005 3:27:29 PM Central Daylight Time, mykittypaws@... writes: How does your husbands doctor know this? Was it through a spinal tap? SPINAL TAPS SCARE ME . I was hoping if it is ms that it was not advanced enough to show on the MRI. however, your explanation blew that theory out of the water. It makes total sense about the lesion being in the right or wrong place. I asked the radiologist how accurate the MRI was and he assured me with the new technology they were 99.9 accurate. Somehow I wasn't convinced. Thanks for the info +++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++ With LDN, we hope for no progression of MS, with MRIs being proof. They can show no new lesions or possibly less lesions than before. So, what does this mean??? I'm still hoping to see less lesions in my next MRI. Marcie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2005 Report Share Posted April 22, 2005 In a message dated 4/22/2005 3:33:16 PM Central Daylight Time, CHRISINAD@... writes: 2 years since symptoms began... Over Thanksgiving 04' he got worst.. they did more MRI's nothing showed up... He had to insist on a spinal tap... Doctor tried to discourage the test said he didn't need it and came right out and said to my husband you have a pinched nerve. +++++++++++++++++++++++++++++++++++++++++++++++++++++++++ For some, a diagnosis means something. For me, with PPMS, considering there is little to no treatment, the diagnosis means little. LDN is, in my opinion, the best line of defense anyway. Marcie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2005 Report Share Posted April 22, 2005 Hi Kathy, syndrome just requires 1 or 2 blood tests which have to be done at the hospital as the labs need to start testing the sample almost immediately apparently. I have galloping SP MS and 'tho was teaching sports when diagnosed in '95 my mobility has gradually deteriorated over the years and I can now walk only using 2 sticks and a wonderful muscle stimulator which delivers an electric shock to both knees via various leads,sticky electrodes and a battery operated box I wear on my waistband. Without it Iwould be totally wheelchair bound. Mercifully I have abundant energy and enjoy robust health so apart from mobility and muscle spasms I do not have any other MS symptoms.I have been following the McDougal diet for 6 years and the BBD for the last 6 months since hearing about it. I didn't experience any problems with either of my spinal taps...mercifully!!! I think you ought to get your DR to organise a blood test for syndrome pdq as you sound to be a prime candidate for it. I'm sure you could find more info re on the internet. Good luck!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2005 Report Share Posted April 22, 2005 I know of 1 other: A gal with all the classic MS symptoms, which neuros down in New Zealand says mimics MS, but without lesions on her MRI they won't definitively diagnose it. She's really frustrated... From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of kathy lintzenichSent: Friday, April 22, 2005 2:35 PMlow dose naltrexone Subject: [low dose naltrexone] MS with no lesions How many of you know of people who have MS with no lesions? I am asking because I was dx in 1999. Two years later after alternative therapy they were gone never to have returned but I still have episodes. My last neuro says I don't have ms. He says if I did there would be lesions in the brain. I don't believe him. Can I have some feedback here? From being on this chatroom, I feel we are more up to date than THE EXPERTS. THANKS, Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2005 Report Share Posted April 22, 2005 , thanks for replying so quickly. No I never did a spinal tap and won't because Dr. Neiper believed they could cause prolonged headaches or an attack. I won't do any of the conventional therapies so that also aided in my decision. I mean if I find out for sure I won't be doing anything differently than I already am. I have had seven MRIS. Four of them have been since 1999 when I was diagnosed. Are you RRMS and have you experienced progression even though you have no lesions? What is the diagnostic tool for Syndrome? Thanks, Kathy Re: [low dose naltrexone] MS with no lesions Hi Kathy, I was diagnosed 1995, MRI scan was negative,all other tests were negative including a spinal tap. Six weeks later I had a milogram[ dye in the spine] at the same time they did another spinal tap which apparently was positive, so I have MS but no lesions. My neuro did say that as MS progresses, should I have another MRI probably lesions would show up.Have you had a spinal tap? Also I think you should investigate the possibility of syndrome a blood disorder which mimics MS. It certainly is worth investigation as with the correct blood thinning medication, the MS syptoms gradually disappear. Hope this is helpful. Regards, . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2005 Report Share Posted April 22, 2005 Hi Kathy, It's funny you should ask this as I just ask my husband's Dr. this the other day. He said that the lesions are there but are too deep and small for the MRI to pick up. A very small lesion can cause a LOT of damage in the right or should I say wrong place. :-) Terria On Fri, 22 Apr 2005 11:35:00 -0700 "kathy lintzenich" <mykittypaws@...> writes: How many of you know of people who have MS with no lesions? I am asking because I was dx in 1999. Two years later after alternative therapy they were gone never to have returned but I still have episodes. My last neuro says I don't have ms. He says if I did there would be lesions in the brain. I don't believe him. Can I have some feedback here? From being on this chatroom, I feel we are more up to date than THE EXPERTS. THANKS, Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2005 Report Share Posted April 22, 2005 How many years did this diagnosis take? This has been going on with me for a total of 12 years. I would like some kind of resolution. In my mind, body, and spirit I believe I have MS and wouldn't wish that diagnosis on anyone. My symptoms manifest itself as such but the doctors say no. Re: [low dose naltrexone] MS with no lesions They said my Husband didn't have MS after several MRI's and no lesions said it was a pinched nerve in his neck at C-3 ... Finally my husband insisted on a spinal tap.... and it came back positive for MS. Only then did he start getting treatment. I know of 1 other: A gal with all the classic MS symptoms, which neuros down in New Zealand says mimics MS, but without lesions on her MRI they won't definitively diagnose it. She's really frustrated... From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of kathy lintzenichSent: Friday, April 22, 2005 2:35 PMlow dose naltrexone Subject: [low dose naltrexone] MS with no lesions How many of you know of people who have MS with no lesions? I am asking because I was dx in 1999. Two years later after alternative therapy they were gone never to have returned but I still have episodes. My last neuro says I don't have ms. He says if I did there would be lesions in the brain. I don't believe him. Can I have some feedback here? From being on this chatroom, I feel we are more up to date than THE EXPERTS. THANKS, Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2005 Report Share Posted April 22, 2005 How does your husbands doctor know this? Was it through a spinal tap? SPINAL TAPS SCARE ME . I was hoping if it is ms that it was not advanced enough to show on the MRI. however, your explanation blew that theory out of the water. It makes total sense about the lesion being in the right or wrong place. I asked the radiologist how accurate the MRI was and he assured me with the new technology they were 99.9 accurate. Somehow I wasn't convinced. Thanks for the info Re: [low dose naltrexone] MS with no lesions Hi Kathy, It's funny you should ask this as I just ask my husband's Dr. this the other day. He said that the lesions are there but are too deep and small for the MRI to pick up. A very small lesion can cause a LOT of damage in the right or should I say wrong place. :-) Terria On Fri, 22 Apr 2005 11:35:00 -0700 "kathy lintzenich" <mykittypaws@...> writes: How many of you know of people who have MS with no lesions? I am asking because I was dx in 1999. Two years later after alternative therapy they were gone never to have returned but I still have episodes. My last neuro says I don't have ms. He says if I did there would be lesions in the brain. I don't believe him. Can I have some feedback here? From being on this chatroom, I feel we are more up to date than THE EXPERTS. THANKS, Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2005 Report Share Posted April 22, 2005 Marcie, I know what you mean. The diagnosis means little to me in the sense that it won't change my course of action. It is LDN and calcium EAP for me until something better comes along. Yet it gets frustrating after 12 years to still have no answer. Anyway, thanks for all the replies. If anyone has any info and wants to email me privately I would appreciate it. I don't want to take up others time talking about myself. Blessings Re: [low dose naltrexone] MS with no lesions In a message dated 4/22/2005 3:33:16 PM Central Daylight Time, CHRISINAD@... writes: 2 years since symptoms began... Over Thanksgiving 04' he got worst.. they did more MRI's nothing showed up... He had to insist on a spinal tap... Doctor tried to discourage the test said he didn't need it and came right out and said to my husband you have a pinched nerve. +++++++++++++++++++++++++++++++++++++++++++++++++++++++++ For some, a diagnosis means something. For me, with PPMS, considering there is little to no treatment, the diagnosis means little. LDN is, in my opinion, the best line of defense anyway. Marcie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2005 Report Share Posted April 22, 2005 If the CSF is also normal..then you have reason to celebrate. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2005 Report Share Posted April 23, 2005 In a message dated 4/23/2005 12:32:19 AM Central Daylight Time, Saberkat7@... writes: My MRI in 1999 and 2000 both showed lesions in the brain and down the spine. Perhaps??? it is possible to have lesions in the spine and not the brain? My Neruo since 2002 has never asked me to take an MRI. I was on Avonex from 1999 until June 2004 and never felt I needed another MRI. If you have MS then why take more MRI's? All he needed to know was if I seemed to have an ongoing attack which bothered me enough to ask for Steroids. - +++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++ , My MRI done in Feb of 2005 showed lesions in the brain and none in the spine! New neuro was puzzled considering how progressed I am. I hadn't had one done since 1999. We compared them, and he said he thought the new one would have looked much worse. I've been on LDN since Nov '03. Maybe it is helping slowly!! Marcie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2005 Report Share Posted April 23, 2005 HI KATHY, I HAVE HAD MS FOR 28 YEARS NOW AND WHEN I FIRST STARTD TO GO TO DOCTORS, THERE WERE NO LESIONS. THEY KEPT ON TELLING ME THAT THEY BELEIVED THAT I HAD MS. THEN I STARTED WITH THE MUSCLE SPASMS AND THEN LIMPING. MORE MRI'S SHOWED NO LESIONS. I PROBABLY ONLY SHOWED LESIONS IN THE LAST 12 YEARS AND IT IS TWO SMALL ONES. AND I DON'T THINK THAT IT PROVES THAT I HAVE MS YET. ONCE I STARTED LDN ALMOST TWO YEARS AGO, THE LESIONS BECAME INACTIVE WITH NO PROGRESSION. I WON'T BE GETTING ANOTHER MRI UNTIL NEXT JANUARY. I HOPE THAT THE LESIONS ARE STARTING TO FADE. WISH YOU WELL MARIE [low dose naltrexone] MS with no lesions How many of you know of people who have MS with no lesions? I am asking because I was dx in 1999. Two years later after alternative therapy they were gone never to have returned but I still have episodes. My last neuro says I don't have ms. He says if I did there would be lesions in the brain. I don't believe him. Can I have some feedback here? From being on this chatroom, I feel we are more up to date than THE EXPERTS. THANKS, Kathy______________________________________________________________________This e-mail has been scanned by MCI Managed Email Content Service, using Skeptic technology powered by MessageLabs. For more information on MCI's Managed Email Content Service, visit http://www.mci.com.______________________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2005 Report Share Posted April 23, 2005 Black holes=swiss cheese holes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2005 Report Share Posted April 24, 2005 MS with no (or one or two lesions which are only visible on MRIs during a relapse) is possible. The only way to be nearly certain that it is MS is to have a lumber puncture (called spinal tap in US). If your MRI during relapse and lumber puncture are negative then its probably not MS. This procedure can be very painful (I had a severe headache for 3 days after mine). Good luck with getting a diagnosis. Kind regards, Mark =================================== Quote Link to comment Share on other sites More sharing options...
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