Aa
I've missed you all so much!!! /Quix and the gang
Hello Quix and all,
I have really missed you all very much. I'm starting to get a little use of my hands and fingers again so I'll do the best I can but hang with me.
I had a stroke. They tell me that people with MS are likely to develop blod clots, and I did. So, that's what cause it.
I have been in rehab and I'm doing pretty good right now. Thank God it was'nt very severe. I lost a little on the right side. I'm still very awkward with my right hand but at least I can use it a little now.
I'm still questioning weather the low dose naltrexone may have had something to do with it. Nobody will answer me. So, here I am back to my good friends who I know I can trust. What do you think? Could the stroke have been caused from the horrible experience I had with the LDN? I really think that the two are related but I'm not a doctor so really I don't have a clue it's more of a feeling.
Let me know as soon as you can on what you think. Also, it is so good to be back. I can't tell you all how much I've missed everyone.
Your Friend,
Carol
I have really missed you all very much. I'm starting to get a little use of my hands and fingers again so I'll do the best I can but hang with me.
I had a stroke. They tell me that people with MS are likely to develop blod clots, and I did. So, that's what cause it.
I have been in rehab and I'm doing pretty good right now. Thank God it was'nt very severe. I lost a little on the right side. I'm still very awkward with my right hand but at least I can use it a little now.
I'm still questioning weather the low dose naltrexone may have had something to do with it. Nobody will answer me. So, here I am back to my good friends who I know I can trust. What do you think? Could the stroke have been caused from the horrible experience I had with the LDN? I really think that the two are related but I'm not a doctor so really I don't have a clue it's more of a feeling.
Let me know as soon as you can on what you think. Also, it is so good to be back. I can't tell you all how much I've missed everyone.
Your Friend,
Carol
Welcome back,I'm sorry to hear about your stroke.Defective DRs,
PT has helped me get back on track after attacks.High doses of steroids(solu-medrol IV infusions)
have helped me.I've never heard of them being called the devils drug.But come day 5 they have made me meaner than a junk yard dog.Then I've done a taper down.I don't like them ,but they have been very effective with stopping attacks.
I have been on them twice,once in march(5 day hospital stay) then in June,done them at home.Home health came in and started them.
They do have some draw backs,increased appitite,mood swings,can cause glaucoma,osteoperosis.
Like any other med they effect everyone differently.
PT has helped me get back on track after attacks.High doses of steroids(solu-medrol IV infusions)
have helped me.I've never heard of them being called the devils drug.But come day 5 they have made me meaner than a junk yard dog.Then I've done a taper down.I don't like them ,but they have been very effective with stopping attacks.
I have been on them twice,once in march(5 day hospital stay) then in June,done them at home.Home health came in and started them.
They do have some draw backs,increased appitite,mood swings,can cause glaucoma,osteoperosis.
Like any other med they effect everyone differently.
Hey Quix,
No, to be truthful, I didn't misunderstand your comments because I did not read your post until later. I was busy composing my own response to GHWheels in my word pad so I could copy and paste it. I've lost too many posts in the middle and have had to re-type everything.
I kept leaving and coming back to my response amidst interruptions over the course of the day until I finally finished and posted it. By that time there were a bunch of other answers.
My reply was a response to the original post from Grannyhotwheels questioning the LDN and gave my opinion about my own experiences with "stroke" and blood clots and LDN which she had mentioned. She had asked me back on 8/8 about my experiences with LDN and I had failed to reply to her, so I thought I would do it here.
I can clearly see in your post that you said "I believe that the stroke was caused by what you went through with the Naltrexone" and "went through" are the operative words meaning the whole scenario, not just the LDN.
Marcie
No, to be truthful, I didn't misunderstand your comments because I did not read your post until later. I was busy composing my own response to GHWheels in my word pad so I could copy and paste it. I've lost too many posts in the middle and have had to re-type everything.
I kept leaving and coming back to my response amidst interruptions over the course of the day until I finally finished and posted it. By that time there were a bunch of other answers.
My reply was a response to the original post from Grannyhotwheels questioning the LDN and gave my opinion about my own experiences with "stroke" and blood clots and LDN which she had mentioned. She had asked me back on 8/8 about my experiences with LDN and I had failed to reply to her, so I thought I would do it here.
I can clearly see in your post that you said "I believe that the stroke was caused by what you went through with the Naltrexone" and "went through" are the operative words meaning the whole scenario, not just the LDN.
Marcie
Hi, Wreck :) It is an interesting conversation, but we both said that MS does not cause increased clotting. When the clots happen it is because of other factors. The biggest one is that many people with MS are far less active, either from disability or fatigue. It is the lack of movement that allows the blood to pool and form clots. Or, people can have the usual predisposition to form clots, like Siddy does. She has a abnormal factor in her blood called Leiden V. But, MS itself, does not cause strokes or clots.
There are also different kinds of clots. Some form in narrowed arteries right where they do their damage (like in many forms of heart attack) and some form in large, deep veins when you don't move around a lot. These can break loose and go to other areas of the body, like the brain and casue strokes. Were you tested for abnormal clotting? Had you slowed to a stop (like me) before the MI?
By the way, welcome to the forum! Would you stick around and tell us your story on a new post?
Quix
There are also different kinds of clots. Some form in narrowed arteries right where they do their damage (like in many forms of heart attack) and some form in large, deep veins when you don't move around a lot. These can break loose and go to other areas of the body, like the brain and casue strokes. Were you tested for abnormal clotting? Had you slowed to a stop (like me) before the MI?
By the way, welcome to the forum! Would you stick around and tell us your story on a new post?
Quix
Hi folks. I haven't been around for awhile, but I'll jump in here. Interesting discussion...Carol, I'm so sorry you're going through this, and hope your recovery is rapid.
The reason I'm so intrigued by this conversaation is because I have never heard that peoople with MS are prone to blood clots. I'll have to do some research into that...Anyway, two years ago, about 6 or 8 months prior to the MS diagnosis, I had a heart attack. Which is due to a blood clot, right? I had no real risk factors, am on the young side for a female heart attack victim...Now I'm wondering if there could be a connection.
Can anyone point me toward information on the subject?
Thank you!
The reason I'm so intrigued by this conversaation is because I have never heard that peoople with MS are prone to blood clots. I'll have to do some research into that...Anyway, two years ago, about 6 or 8 months prior to the MS diagnosis, I had a heart attack. Which is due to a blood clot, right? I had no real risk factors, am on the young side for a female heart attack victim...Now I'm wondering if there could be a connection.
Can anyone point me toward information on the subject?
Thank you!
I kinda like the idea of grannyhotlegs, it's kinda catchy is'nt it?
Momzilla, I read a ton of stories from people who took LDN, so I was very excited about taking it. Because of a bad doctor and my own stupidity of not researching how to take LDN, it turned out bad for me. Since this has happened I have decided not to try again. The experience was just too much for even me. I'm positive by the scripts I read that people are being helped by it but again it's ones own choice as to weather or not they feel right about taking it. I think if the Lord had meant for me to be on LDN then he would not have allowed that to happen. Also, I agree that the LDN probably did not cause my stroke but the situation it left me in I feel did cause it. The intense pain, which probably upped my BP and the heart disrythmia, and also something caused my potassium to bottom out. All of this combined could have caused just about anything.
One thing I would like to know is: When the LDN blocked my pain meds, was that what I would feel like without pain meds? I have never felt such intense pain not even in childbirth. Plus, it would'nt stop. The LDN had to run it's course before they could give me anything to stop it. I know I never want to feel that way again.
Another question is will PT and a script for High dose steroids benefit my MS? I really don't know that much about steroids but I take a 10mg pill a day of prednisone and I have been able to tell over time that I do have a little more energy. Why do they call steroids the devils drug or whatever it is?
Thanks all for listening to me and I'll talk to you soon. I really love you guys,
Carol
Momzilla, I read a ton of stories from people who took LDN, so I was very excited about taking it. Because of a bad doctor and my own stupidity of not researching how to take LDN, it turned out bad for me. Since this has happened I have decided not to try again. The experience was just too much for even me. I'm positive by the scripts I read that people are being helped by it but again it's ones own choice as to weather or not they feel right about taking it. I think if the Lord had meant for me to be on LDN then he would not have allowed that to happen. Also, I agree that the LDN probably did not cause my stroke but the situation it left me in I feel did cause it. The intense pain, which probably upped my BP and the heart disrythmia, and also something caused my potassium to bottom out. All of this combined could have caused just about anything.
One thing I would like to know is: When the LDN blocked my pain meds, was that what I would feel like without pain meds? I have never felt such intense pain not even in childbirth. Plus, it would'nt stop. The LDN had to run it's course before they could give me anything to stop it. I know I never want to feel that way again.
Another question is will PT and a script for High dose steroids benefit my MS? I really don't know that much about steroids but I take a 10mg pill a day of prednisone and I have been able to tell over time that I do have a little more energy. Why do they call steroids the devils drug or whatever it is?
Thanks all for listening to me and I'll talk to you soon. I really love you guys,
Carol
Siddy, You completely misunderstood my comment!! I was NOT saying that the stroke was caused by the Naltrexone, but I do suspect it was caused by the negligent way that the Naltrexone was given. Carol was placed into florid withdrawal and had many hours of severe, untreatable pain. I never even meant to suggest that it was the LDN itself. What Carol went through physiologically and cardiovascularly (with the arrhythmia) and the persistently and dangerously low potassium was a setup for a cardiovascular accident. I question now, and have always questioned, the way it was given to her with the meds that she was already on.
What I said was, the stroke was likely related to "what she went through with the Naltrexone." (You've got to admit that she wouldn't have ended up in the ICU in withdrawal had the neurologist not given her Naltrexone while she was on narcotic meds) Combine the electrolyte imbalance which she already had and was not corrected prior to starting therapy, with the acute withdrawal, that they documented, with the severe return of pain (which was why she was on the narcotics to begin with.) coupled with a likely surge in her blood pressure, coupled with the adrenaline of thinking she was going to die.....
The episode began just after she took her first dose and had all the characteristics of severe, precipitous withdrawal (which I was taught can be life-threatening). The LDN "experts" that she spoke with told her it was withdrawal from the drug COMBO. We are all saying the same thing except, I think the stroke is likely related to the trauma. The blame if it is to be placed lies with the doctor, not the med!
Carol, did you understand that I meant (and said) that the stroke was likely caused by the trauma "you went though" with the withdrawal - not from the medicine? Because I agree with Siddy, there is no evidence that Naltrexone, used properly, is dangerous. I just don't think your doctor used it properly. And again, I can't KNOW that the stroke wasn't a coincidence.
Siddy - we had been over this before in the forum, right after Carol got out of the ICU. It was the combination of meds that caused the reaction. I was the one who looked up the advisory from the LDN people to be off the narcotics for 2 weeks prior to starting the LDN, which then, other LDN people verified.
Quix
What I said was, the stroke was likely related to "what she went through with the Naltrexone." (You've got to admit that she wouldn't have ended up in the ICU in withdrawal had the neurologist not given her Naltrexone while she was on narcotic meds) Combine the electrolyte imbalance which she already had and was not corrected prior to starting therapy, with the acute withdrawal, that they documented, with the severe return of pain (which was why she was on the narcotics to begin with.) coupled with a likely surge in her blood pressure, coupled with the adrenaline of thinking she was going to die.....
The episode began just after she took her first dose and had all the characteristics of severe, precipitous withdrawal (which I was taught can be life-threatening). The LDN "experts" that she spoke with told her it was withdrawal from the drug COMBO. We are all saying the same thing except, I think the stroke is likely related to the trauma. The blame if it is to be placed lies with the doctor, not the med!
Carol, did you understand that I meant (and said) that the stroke was likely caused by the trauma "you went though" with the withdrawal - not from the medicine? Because I agree with Siddy, there is no evidence that Naltrexone, used properly, is dangerous. I just don't think your doctor used it properly. And again, I can't KNOW that the stroke wasn't a coincidence.
Siddy - we had been over this before in the forum, right after Carol got out of the ICU. It was the combination of meds that caused the reaction. I was the one who looked up the advisory from the LDN people to be off the narcotics for 2 weeks prior to starting the LDN, which then, other LDN people verified.
Quix
I wanted to say hello, I am somewhat new to the forum. And send you wishes for a speedy recovery.
Jazzy
Jazzy
I am happy to hear that you are feeling better and improving with physical therapy. That is a good sign.
For what it is worth and this is only my opinion:
I had a blood clot behind my left knee in 2003 without any warning or any symptoms. I was treated with Coumadin and the clot was eventually reabsorbed. In 2004 my left leg and left arm became weak and I was told that I had a stroke (or maybe a series of mini strokes). I was given physical therapy but the weakness NEVER improved. More often than not, with a stroke you do improve with physical therapy. As my left side got weaker I was finally dxed with MS (2005), so suddenly the "stroke" dx was looked at in a different light and changed to a dx of MS and the weakness on my left side became part of the MS symptoms. My weakness on the left side comes and goes. Sometimes it is worse than other times and I have learned to go with the flow.
After my blood and spinal tests were completed for probable MS, and before the definite dx, it was noted that I had one copy of the factor V Leiden mutation which makes me more susceptible to blood clots (about 5X + more than normal). So the blood clot in 2003 could have been due to the V Leiden. As a lot of people with MS are not as active, one might assume that they are also prone to blood clots because of lack of circulation. I don't think MS causes blood clots.
Re: Low Dose Naltrexone, I have to say categorically that LDN taken alone in 3mg will not cause a blood clot or stroke and I have never seen a case reported in anything I have researched. If anyone finds out differently I would appreciate a link.
However, Grannyhw, you said back in early August that:
"....... At the time of my first dose of LDN I was also taking, methadone, lyrica, oxycodone, cymbalta, and prednisone......."
so yes, the reaction you got was because of this dangerous COMBO of LDN and the other drugs you were taking. I think you probably know that your doctor was not taking your other medications into account when prescribing LDN, even though she gave you a smaller dosage than the suggested one of 3mg ( max 4.5mg). Taking into account the 50 mg dosage given to drug addicts this is a fraction of the dosage.
Personal experience;
I took 3mg of LDN for one year starting in April 2006 and had absolutely no side effects. I only stopped taking it prior to my fall and subsequent foot surgery at the end of April because my husband, who is a pharmacist, told me to stop taking it until I was off my pain meds and until I was back to normal, just to be overly cautious.
I intend to resume taking LDN again in the near future. I have been off it for 4 months and although it never improved my leg and arm symptoms which started before I ever took LDN and which were well on their way by then, it did give me an overall sense of well being and now I have had a chance to feel what it is like without it, I think I felt better when I was taking it. I have friends who I keep in touch with on a regular basis and who have been dxed with MS. They have been taking LDN for several years and some of their symptoms have greatly improved with no side effects from the LDN. Whether or not their symptoms would have improved, or changed without the LDN is a question nobody can answer for sure, but they sincerely believe it is due to the LDN.
I am not starting a debate here on the efficacy of LDN as there have been many previous postings on the subject, and I am not suggesting anybody should take it. This is strictly my opinion. My husband would never let me take anything that he felt was going to harm me or have bad side effects and we did a lot of research and talked to many pharmaceutical reps and 3 doctors before I started taking the LDN. My prescribing doctor took the time to research it and he said "well, it can't do you any harm, so you have nothing to lose". Of course, I don't take anything other than Plavix (blood clots) so it is not competing with anything else.
For what it is worth and this is only my opinion:
I had a blood clot behind my left knee in 2003 without any warning or any symptoms. I was treated with Coumadin and the clot was eventually reabsorbed. In 2004 my left leg and left arm became weak and I was told that I had a stroke (or maybe a series of mini strokes). I was given physical therapy but the weakness NEVER improved. More often than not, with a stroke you do improve with physical therapy. As my left side got weaker I was finally dxed with MS (2005), so suddenly the "stroke" dx was looked at in a different light and changed to a dx of MS and the weakness on my left side became part of the MS symptoms. My weakness on the left side comes and goes. Sometimes it is worse than other times and I have learned to go with the flow.
After my blood and spinal tests were completed for probable MS, and before the definite dx, it was noted that I had one copy of the factor V Leiden mutation which makes me more susceptible to blood clots (about 5X + more than normal). So the blood clot in 2003 could have been due to the V Leiden. As a lot of people with MS are not as active, one might assume that they are also prone to blood clots because of lack of circulation. I don't think MS causes blood clots.
Re: Low Dose Naltrexone, I have to say categorically that LDN taken alone in 3mg will not cause a blood clot or stroke and I have never seen a case reported in anything I have researched. If anyone finds out differently I would appreciate a link.
However, Grannyhw, you said back in early August that:
"....... At the time of my first dose of LDN I was also taking, methadone, lyrica, oxycodone, cymbalta, and prednisone......."
so yes, the reaction you got was because of this dangerous COMBO of LDN and the other drugs you were taking. I think you probably know that your doctor was not taking your other medications into account when prescribing LDN, even though she gave you a smaller dosage than the suggested one of 3mg ( max 4.5mg). Taking into account the 50 mg dosage given to drug addicts this is a fraction of the dosage.
Personal experience;
I took 3mg of LDN for one year starting in April 2006 and had absolutely no side effects. I only stopped taking it prior to my fall and subsequent foot surgery at the end of April because my husband, who is a pharmacist, told me to stop taking it until I was off my pain meds and until I was back to normal, just to be overly cautious.
I intend to resume taking LDN again in the near future. I have been off it for 4 months and although it never improved my leg and arm symptoms which started before I ever took LDN and which were well on their way by then, it did give me an overall sense of well being and now I have had a chance to feel what it is like without it, I think I felt better when I was taking it. I have friends who I keep in touch with on a regular basis and who have been dxed with MS. They have been taking LDN for several years and some of their symptoms have greatly improved with no side effects from the LDN. Whether or not their symptoms would have improved, or changed without the LDN is a question nobody can answer for sure, but they sincerely believe it is due to the LDN.
I am not starting a debate here on the efficacy of LDN as there have been many previous postings on the subject, and I am not suggesting anybody should take it. This is strictly my opinion. My husband would never let me take anything that he felt was going to harm me or have bad side effects and we did a lot of research and talked to many pharmaceutical reps and 3 doctors before I started taking the LDN. My prescribing doctor took the time to research it and he said "well, it can't do you any harm, so you have nothing to lose". Of course, I don't take anything other than Plavix (blood clots) so it is not competing with anything else.
Oh, Carol~
It's just so great to hear from you! I can't believe that with all you've been through you still have that same great disposition. I'm so sorry to hear you've been through even more. I'm glad you're on the mend. It sounds like your doctor is taking good care of you.
Out of the wheelchair? We're going to have to call you HotLegs!
I'm just so relieved that you're back with us. Stay in touch.
God's blessings,
Chris*
P.S. ~~ Why on earth are they treating you for anxiety? JUST KIDDING!!! I need a pill just reading about it all!!!! Love ya!
It's just so great to hear from you! I can't believe that with all you've been through you still have that same great disposition. I'm so sorry to hear you've been through even more. I'm glad you're on the mend. It sounds like your doctor is taking good care of you.
Out of the wheelchair? We're going to have to call you HotLegs!
I'm just so relieved that you're back with us. Stay in touch.
God's blessings,
Chris*
P.S. ~~ Why on earth are they treating you for anxiety? JUST KIDDING!!! I need a pill just reading about it all!!!! Love ya!
I would never get mad at any of you for speaking what you feel is right. That is the one thing that I admire so much about every one here and that that we can say what we feel without making each other mad. At least that's how I feel.
Yes, Quix, I did sleep for a long period of time and was very quite the next couple of days. I'm not sure about my blood pressure but my potassium level almost bottomed out. That's how it was put to me anyway. Also, the ambulance guy said that I had heart disrythmia(?) and I was in very severe pain.
I have'nt started a new neurologist yet but you can bet I did'nt go back to the one I had. She never even called to check on my condition or anything.
My doctor is treating me with metolazone for BP and anxiety and steriods. Also I'm going to PT 3 days a week.
I told him (my doctor) that I just need a break from neuro's right now. He said that he understood and that when I was ready to go ahead just let him know.
Anyway, thank you all for your concern and I just thank God that it was'nt a bad stroke and that with therapy I should regain total use of my hand again. Well as much as I had previously had. My right leg has a pretty bad drop but the braces that I have to wear seem to help with that. In fact I have been up out of the wheelchair and using a walker for a little while everyday. YEA!!
Take care,
Carol
Yes, Quix, I did sleep for a long period of time and was very quite the next couple of days. I'm not sure about my blood pressure but my potassium level almost bottomed out. That's how it was put to me anyway. Also, the ambulance guy said that I had heart disrythmia(?) and I was in very severe pain.
I have'nt started a new neurologist yet but you can bet I did'nt go back to the one I had. She never even called to check on my condition or anything.
My doctor is treating me with metolazone for BP and anxiety and steriods. Also I'm going to PT 3 days a week.
I told him (my doctor) that I just need a break from neuro's right now. He said that he understood and that when I was ready to go ahead just let him know.
Anyway, thank you all for your concern and I just thank God that it was'nt a bad stroke and that with therapy I should regain total use of my hand again. Well as much as I had previously had. My right leg has a pretty bad drop but the braces that I have to wear seem to help with that. In fact I have been up out of the wheelchair and using a walker for a little while everyday. YEA!!
Take care,
Carol
It's good to here from you!! I'm so sorry about your stroke. :(
Many prayers for a speedy recovery!
Take care! Pat :)
Many prayers for a speedy recovery!
Take care! Pat :)
I can't tell you how thrilled to find you back here! I am so relieved. When you disappeared, all I could think of was that you had had a stroke or possibly even a heart attack (less likely becasue of your age). I can't believe that now you have to contend with this! You are so strong! Then we were afraid that you had become angry with us when a couple of us were so angry and adamant about the way that doctor had treated you! I'm sooooooooooo glad you're still with us.
I have no way to really know, but yes, I believe that the stroke was caused by what you went through with the Naltrexone. The strokes they say are more common in MS, ARE NOT from MS, but from being too inactive. Once they were able in the ICU to medicate your pain properly with the morphine, did you sleep for a long while and were you especially quiet in bed for a day or two? That is the major cause of stroke. The other factor might have been elevated blood pressure from the seizure/spasms and the severe pain. So, yes, I believe they could well be linked.
Do you have a new doctor/neurologist now? Quix (I'm so glad to hear from you!)
I have no way to really know, but yes, I believe that the stroke was caused by what you went through with the Naltrexone. The strokes they say are more common in MS, ARE NOT from MS, but from being too inactive. Once they were able in the ICU to medicate your pain properly with the morphine, did you sleep for a long while and were you especially quiet in bed for a day or two? That is the major cause of stroke. The other factor might have been elevated blood pressure from the seizure/spasms and the severe pain. So, yes, I believe they could well be linked.
Do you have a new doctor/neurologist now? Quix (I'm so glad to hear from you!)
I am so glad you are back and sooooooo sorry you have had a stroke! I am still praying for you!
Take care!
Kristin
Take care!
Kristin
WOW! You are really a special bunch of people. Who knew that I'd be missed this much. It makes me feel so good to know that I have your support and prayers through all of this. I'm so thankful for each and every one of you.
Carol
Carol
So sorry about what you have been going through, but glad you are on the road to recovery!
Take care of yourself, you are in my prayers.
Doni
Take care of yourself, you are in my prayers.
Doni
Hi!
A stroke - oh my gosh, serious stuff. I'm so glad you made it - it must have been terribly scary.
It's nice to hear you are on your road to recovery. Is this something they will test for now periodically?
Sending healing prayers your way,
SL
A stroke - oh my gosh, serious stuff. I'm so glad you made it - it must have been terribly scary.
It's nice to hear you are on your road to recovery. Is this something they will test for now periodically?
Sending healing prayers your way,
SL
Hi, Carol! Soooo glad to hear a word from you! We've been so worried! I have to get my kids off to school, but will be back!
So sorry about what you've been through -- ALL you've been through.
Take care, and hang in there!
Love,
Chris*
So sorry about what you've been through -- ALL you've been through.
Take care, and hang in there!
Love,
Chris*
So glad you're back!!! We were worried about you - with good cause, I see:(
I am sorry about what you've been through. I will keep you in my prayers. Please take it easy and don't overdo it. You will need your rest.
Take care and God bless!
Penn
I am sorry about what you've been through. I will keep you in my prayers. Please take it easy and don't overdo it. You will need your rest.
Take care and God bless!
Penn
Hi Carol,
WELCOME back! Everyone was getting worried about not having heard from you.
Glad you are not too much worse for wear! Can't answer on the meds, sorry.
Take care Friend!
S
WELCOME back! Everyone was getting worried about not having heard from you.
Glad you are not too much worse for wear! Can't answer on the meds, sorry.
Take care Friend!
S
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