Guest guest Posted December 26, 2002 Report Share Posted December 26, 2002 <PRE>ouch, hope it all goes well for you stacey. kathy in il Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2002 Report Share Posted December 27, 2002 Not great news, Stacey. I'm really sorry to hear that. I hope your neurosurgeon has some encouraging words for you on January 2nd. I'm glad that your Christmas was a good one despite how you are feeling [ ] MRI Results > Hi Everyone, > I went and picked up my MRI films today and read the report. Here's what it > says: > Impression: Large right paracentral disc extrusion at the L3-L4 level, > slightly bigger than before. > > Findings: Disc dessication is noted at the L3-L4 and L4-L5 level with > narrowing of the L3-L4 intervertebral space. The patient had right > paracentral extrusion at the L3-L4 level. The present study demonstrates a > large right paracentral disc extrusion at the L3-L4 level. The lesion > measures approximately 1.2 cm transverse and 0.8 cm from front to back. It > displaces adjacent spinal sac and appears to be slightly larger than in the > previous exam. Enhancement is present suggesting that there may be scar > formation or adhesions adjacent to the area. > > That is what I am dealing with. In other words, it is worse than it was > before the surgery that I had in May. I see the neuro on 1/2/03 and I can > just guess what he will say. Back to the operating room. I don't know how > he will want to fix it this time though. Here we go again. > Love and Hugs > Stacey in PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2005 Report Share Posted March 23, 2005 I just wanted to give all an update and say hi....i know, i've been mia for a long time due to some serious problems.....so my sincerest apologies to all that I owe emails....Anyway, I've been on LDN for about 28 weeks now with good results at 3.5 mg/ml via REVIA in distilled water....I tried higher and lower doses and all had side effects like either sleepin all the time or insomnia....anything over 3.5 actually put me in the wheelchair but starting at 3 mg pulled me out of my worst flare ever and got me from bedridden to walkin in 2 weeks if not less.... but major stress from November on put me in the hospital for a bit....thus new MRI's...exact quote from my neuro was " too many new lesions to count " and I've only been diagnosed for 14 months....but I'm number 4 in my family to be diagnosed so we have bad genes I guess....I was on Avonex for a short spell and WILL NOT do another interferon....and they said the Copax is too weak for my type of M.S. so they wanted me on the Tysabri in January and I said I wanted to do research first....now of course it's off the market.....so they prescribed CellCept which isn't even approved for MS....it's for transplant patients..... and they did PLASMAPHRESIS when I was in the hospital....Anyone unfortunate enuf as me to get tortured that way? oh, it doesn't have much support for use in MS patients either....but hey, my neuro won't prescribe LDN becuz there's only anecdotal support for it right now..what a shock (am I gettin ya wet with the dripping sarcasm yet?) here's the kicker though..my 10 year old black lab mix was diagnosed with bone cancer in October and all the research said even with meds and chemo, she'd likely only make it 5 - 7 months...so of course I immediately took a chance with the LDN at 1.5 mg/ml and the huge tumor disappeared and her appetite came back...it looked like it may have started coming back so I increased it to 2 mg/ml and she's still fine Don't let my MRI results scare ya....I never had a very good prognosis from the start and I still trust the LDN more than the approved meds....I've been able to stop all the pills they had me on and no longer suffer through the shots.....my EDSS isn't the best but the Avonex didn't do anything anyway other than make me feel bad physically and even worse mentally and emotionally.... Oh, I must say I do not support the MS diet...you know, not eating without gettin sick for almost 3 months because of vertigo, but I will say I've never looked this good in my teens or 20's so far I am going thru all 5,000 of my emails so feel free to tart sendin em again if ya haven't given up on me yet....or email me for my new messenger ID as it's different from my norm peace all, Donna __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2005 Report Share Posted September 27, 2005 My tremors have gotten very debilitating, thus the short post. Doc ordered a new MRI last week. Previous was done in Jan '05. I've been on 4.5mg LDN w/Avicel filler for nearly two years. Immediately after starting LDN, better bladder control and less L'hermettes (sp?). New MRI showed NO changes. Good, but confusing. My hands were showing signs of weakness 3 years ago. The tremors were mild 2 years ago. I'm not silly enough to think that the damage wasn't there 2 years ago and just now manifested. Anyway, doc wants to do lumbar puncture. My symptoms & disability are not condusive with my MRI. Questioning if it's really MS. Any thoughts??? Marcie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2005 Report Share Posted September 27, 2005 In a message dated 9/27/2005 11:25:15 AM Central Daylight Time, TwisterAlley2@... writes: Marcie, Have you been tested for Lyme via Western Blot? Here is a cheap homeopathic Lyme treatment that my alternative medicine doc is familiar with. Ledum treatment http://cassia.org/ledum.htm Bren +++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++ Bren, I've had 2 Lymes test, but I'm not sure which it was. Both were negative, of course. I did make the suggestion to test for Lymes to the doc this morning. I was excited that the MRI showed no progression, but not surprised. LDN is doing something. The tremors are just so frustrating! Quality of life has been greatly reduced. Marcie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2005 Report Share Posted September 27, 2005 In a message dated 9/27/2005 1:20:37 PM Central Daylight Time, wjkeeman@... writes: Hi Marcie, I stared out with tremor too, on one side. They thought it was MS but now it's Parkinson's. Early Parkinson tremor usually is limited to one side. A sure way to Dx Parkinson's is to take the drug Sinemet. The tremor should go away, at least for a few years. An MRI does not "show" Parkinson's. Regards +++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++ , My tremors are on both sides. We've tried Keppra, Primidone & Topamax. Nothing has helped so far. Keppra helped with spasms. Gotta have some relief. Marcie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2005 Report Share Posted September 27, 2005 In a message dated 9/27/2005 1:55:32 PM Central Daylight Time, TwisterAlley2@... writes: I'm sure your doc won't use Igenex Labs and if I recall you are on a very fixed income and Medicare probably won't pay for the Igenex Western Blot. It's about $90 to have that test from Igenex. Have your doc run a Western Blot, insist on Western Blot...don't settle for the ELISA test. Has your doc ruled out Parkinson's? Bren +++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++ Bren, I'm going to insist on the Western Blot test for sure. I've never been checked for Parkinson's, but I think that's what the new neuro is thinking. Marcie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2005 Report Share Posted September 27, 2005 > My tremors have gotten very debilitating, thus the short post. Doc ordered a > new MRI last week. Previous was done in Jan '05. I've been on 4.5mg LDN > w/Avicel filler for nearly two years. Immediately after starting LDN, better > bladder control and less L'hermettes (sp?). New MRI showed NO changes. Good, > but confusing. My hands were showing signs of weakness 3 years ago. The > tremors were mild 2 years ago. I'm not silly enough to think that the damage wasn't > there 2 years ago and just now manifested. Anyway, doc wants to do lumbar > puncture. My symptoms & disability are not condusive with my MRI. Questioning > if it's really MS. Any thoughts??? > > Marcie ======== Marcie, Have you been tested for Lyme via Western Blot? Here is a cheap homeopathic Lyme treatment that my alternative medicine doc is familiar with. Ledum treatment http://cassia.org/ledum.htm Bren Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2005 Report Share Posted September 27, 2005 > In a message dated 9/27/2005 11:25:15 AM Central Daylight Time, > TwisterAlley2@w... writes: > > > > Marcie, > > > > Have you been tested for Lyme via Western Blot? Here is a cheap homeopathic > > Lyme treatment that my alternative medicine doc is familiar with. > > > > Ledum treatment > > http://cassia.org/ledum.htm > > > > Bren > > +++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++ > > Bren, > > I've had 2 Lymes test, but I'm not sure which it was. Both were negative, of > course. I did make the suggestion to test for Lymes to the doc this morning. > I was excited that the MRI showed no progression, but not surprised. LDN is > doing something. The tremors are just so frustrating! Quality of life has > been greatly reduced. > > Marcie ======== I'm sure your doc won't use Igenex Labs and if I recall you are on a very fixed income and Medicare probably won't pay for the Igenex Western Blot. It's about $90 to have that test from Igenex. Have your doc run a Western Blot, insist on Western Blot...don't settle for the ELISA test. Has your doc ruled out Parkinson's? Bren Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2005 Report Share Posted September 27, 2005 > In a message dated 9/27/2005 1:55:32 PM Central Daylight Time, > TwisterAlley2@w... writes: > > > > I'm sure your doc won't use Igenex Labs and if I recall you are on a very > > fixed income and Medicare probably won't pay for the Igenex Western Blot. > > It's about $90 to have that test from Igenex. Have your doc run a Western Blot, > > insist on Western Blot...don't settle for the ELISA test. > > > > Has your doc ruled out Parkinson's? > > > > Bren > > +++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++ > > > Bren, > > I'm going to insist on the Western Blot test for sure. I've never been > checked for Parkinson's, but I think that's what the new neuro is thinking. > > Marcie ========= Also Marcie get your thyroid checked. Both Hypo and Hyper thyroid problems can cause tremor. You might want to have your adrenal glands checked too via a 24 hour urine specimen. Once someone has tremor the slightest upset can cause it to worsen for awhile. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2005 Report Share Posted September 28, 2005 , I'm curious about the lyme info you gave. Do you know anyone who has tried this treatment? I'm wondering what would happen if one went through the treatment without going through the test, if anything negative would happen. Up here in Canada I've been told the tests run anywhere from $400.00 to $700.00. Not exactly in the budget right now. Barbara From: Bren > > > Marcie, > > > > Have you been tested for Lyme via Western Blot? Here is a cheap homeopathic > > Lyme treatment that my alternative medicine doc is familiar with.> > > > Ledum treatment> > http://cassia.org/ledum.htm > > > > Bren> I'm sure your doc won't use Igenex Labs and if I recall you are on a very fixed income and Medicare probably won't pay for the Igenex Western Blot. It's about $90 to have that test from Igenex. Have your doc run a Western Blot, insist on Western Blot...don't settle for the ELISA test. Has your doc ruled out Parkinson's?Bren Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2005 Report Share Posted November 14, 2005 Congratulations ! Let me know if you'd like to share your health success story in more detail, Cris [low dose naltrexone] MRI Results I have just received the results for my 11/6/05 MRI and there has been absolutely no disease progress since my last MRI on 7/1/04. I have been on LDN since 8/20/04. In addition, I got umbilical cord stem cells on 10/15/05 and had my mercury fillings removed in January 2005.Something is working. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2005 Report Share Posted November 15, 2005 that i s GREAT NEWS!!!!!!!!!!! WOOHOOOOOOO Nola [low dose naltrexone] MRI Results I have just received the results for my 11/6/05 MRI and there has been absolutely no disease progress since my last MRI on 7/1/04. I have been on LDN since 8/20/04. In addition, I got umbilical cord stem cells on 10/15/05 and had my mercury fillings removed in January 2005.Something is working. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2007 Report Share Posted January 6, 2007 I had an MRI and they found what's called a mega magna cerna cyst in my brain that is also unrelated to CMT that I was born with. It's a tumor that just grows but is not typically dangerous. Somehow I got the bad genes. Andy Quote Link to comment Share on other sites More sharing options...
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