Re: ???any thoughts

[Guest guest]

Hi Kathy,I believe you were having an MS exacerbation (or "flare") related to your upper respiratory infection. There are lots of things that can adversely affect a person with MS, and a viral infection is one of them. You can find a helpful discussion of MS exacerbations near the bottom of this website:http://tinyurl.com/grpm9Sincerely,Dudley Delany

dudley_delanyFrom: kathy bishop

Sent: Wednesday, January 16, 2008 12:47 PM

low dose naltrexone

Subject: [low dose naltrexone] ???any thoughts

hi,kathy here, does anybody in the group have a thoght on this, sunday afternoon i took a dose of (1 teaspoon ) LIQUID TYLNOL FOR A COLD TOOK A NAP GOT UP COULD NOT EVEN MOVE . leg very stiff drop foot an all very sluggish, just wanted to sleep. hard to focus on any thing.. took the same dose the night before no problem do you think this was a flare??? took 3 days to get back to normal, so to say. not sure what a flare is really. have question dr. before not any good answers on the subject.. once about a fall i took, for no reason, he said it might have been a flare??????????????? any thoughts thanks

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[Guest guest]

>

> hi,kathy here, A COLD, leg very stiff drop foot and all very

sluggish, just wanted to sleep. hard to focus on any thing.. do you

think this was a flare??? took 3 days to get back to normal, so to

say.

=========

Flare, relapse of old symptoms.

An illness like a cold can cause an aggravation of old symptoms even

while taking LDN.

[Guest guest]

Hi Kathy,

I actually just got over a cold and found out, first hand, that

getting sick can bring on an exacerbation. I spent a few days in

bed, too exhausted to even move. I slept A LOT and my

numbness/tinglies got worse, so I'm sure that's what it was.

Really is crappy, that we can't just get a cold, like everyone

else...we have to add insult to injury and throw an exacerbation on

top of it!

Sorry you also found out the hard way, but glad you're feeling better!

Best wishes,

-- In low dose naltrexone , kathy bishop

<kathyjo760@...> wrote:

>

> hi,kathy here, does anybody in the group have a thoght on this,

sunday afternoon i took a dose of (1 teaspoon ) LIQUID TYLNOL FOR A

COLD TOOK A NAP GOT UP COULD NOT EVEN MOVE . leg very stiff drop

foot an all very sluggish, just wanted to sleep. hard to focus on any

thing.. took the same dose the night before no problem do you think

this was a flare??? took 3 days to get back to normal, so to say.

not sure what a flare is really. have question dr. before not any

good answers on the subject.. once about a fall i took, for no

reason, he said it might have been a flare??????????????? any

thoughts thanks

>

> ---------------------------------

> Never miss a thing. Make your homepage.

>

[Guest guest]

Aletha and Miki (and anyone who cares),

Are you sure you are really ready for all that?? I have kept a summary of all my symptoms, improvements, etc. I hope it is helpful and encouraging to everyone. I know it is long, but I'm hoping it is a worthwhile read for those of you who are interested. It really is a good testimony to the power of LDN.Chrisie

In September 2006, I was a 39-year-old wife and mother of six happy and healthy children. For the past five years, I had been a Dyslexia Specialist (I test and tutor children and adults with dyslexia) and have had a busy professional and home life. It has been crazy but it has been rewarding as well. My oldest child was 15 and my “baby” was three. Up until then, I considered myself a healthy person. I watched what I ate, I walked 3 to 5 miles six days a week (walking up very steep hills), I did Pilates regularly, and my weight was where it should be for my height. (I’m 5’1” and weigh about 112 pounds.)

Then things began to change rapidly. Saturday, September 16 2006, I walked to a garage sale in my neighborhood. While standing in this woman’s driveway I lost my balance. She asked me if I was okay. I told her I was fine and that I just lost my balance from time to time. Then I realized that was an odd statement and that I’d been losing my balance for about 3 or 4 weeks prior to that day. However, I shrugged it off and went on with my day. Later on that day, my legs just started feeling so odd. I was at my mother’s house in Bakersfield and I lost my balance and almost fell. I was so exhausted that I took a nap but it did not seem to help.

All the way home (about an hour and a half drive) I just kept thinking that my legs felt so weird but I really thought I’d wake up the next day and it would all be gone.

However, the next day it was not gone and my legs felt increasingly strange. That was a Sunday morning and I went to church wearing high-healed shoes (as I normally do) but my legs felt so unstable, weak, and elastic-like. I had to hold onto someone or something to keep my balance that day and I was very tired. Here is a brief overview of the symptoms I felt that week (the week of September 18, 2006). Every day my symptoms changes and got progressively worse.

· Monday – The feeling of weakness persisted and I began to be more concerned. The elastic feeling in my legs worsened and I began to feel random pain all over my legs and bottom of my feet. Pain was mild but very noticeable. I was very tired and needed to take a nap that afternoon.

· Tuesday – I called my chiropractor and told him what was going on. He told me to go to my MD as soon as possible. Weakness and elastic-like feeling worsened and the pains in my legs were not as frequent but hurt more. It was becoming more apparent when I walked that something was not right. My walking was getting slower. I saw my MD that afternoon. She made me cry as I was explaining my physical problems. Because of that, she thought my physical problems were stress related and prescribed a mild anti-depressant. I was not depressed, just stressed

because I was concerned about what was going on in my body. She said I was fine, except that I couldn’t walk right. (Not helpful information!) She ran extensive blood work. Extreme fatigue continued. I canceled my tutoring students that afternoon so I could stay home and rest.

· Wednesday – I experienced fewer boughts of pain, but when the pain did come, it hurt more. I also experiencing some tingling in my legs. My hips were starting to hurt and I was having a hard time controlling them when I walked. I realized I couldn’t pivot without losing my balance anymore. I was having a hard time walking in an open space without having something to hold onto. I felt that my walking difficulties were becoming more apparent with each passing day.

· Thursday – My friend Donna told me that MS is often accompanied by heat sensitivity so I took a warm bath on this morning to see how I would react. I did not necessarily feel any burning while in the warm water, but I felt a ton of tingling all day long after being in the bathtub that morning. I decided to try to have a “normal” day to see how well I handled it. I saw my tutoring students that day, went shopping, and tried to carry on as normal. I didn’t take a nap that day. By Thursday night, I was extremely exhausted and could only walk while holding onto someone to keep me steady.

At home, I was holding onto walls, counters, etc. to keep myself from falling over.

· Friday – This day was a turning point for me. I went from a slow, unsteady walk to a horrible spastic “chicken-walk.” That is the best way to describe it. My balance was better but my legs seemed to have a mind of their own and just sort of flailed as I walked. I had no control over what my legs did – I felt that I was a victim of what they wanted to do and how they wanted to go. I called my primary care doctor to tell her what was going on and she was of little help. I was trying to tell her what was going on and how I had changed over the week. She didn’t want

to hear me; she told me to be quiet so she could talk and dismissed me so she could get back to her patients. That was discouraging. She told me if I wanted to, I should go to the ER. I was not ready for that yet. I was still hoping to get better on my own. I was still experiencing random pains and my right hip was hurting. This was only about a 3 on the “pain scale.” The muscle spasms were becoming more frequent and my left hip was experiencing involuntary movement.

· Saturday -- I helped my parents move into their new house that day. (I had been trying to help them with their move while all this was going on. My parents moved from Bakersfield to Santa Clarita so they could be closer to my family.) My friends and family were becoming more and more concerned, but I tried to minimize what was going on in front of my parents because they had so many things going on with them. My gait worsened on Saturday and my leg muscles were becoming tighter and tighter. I was not as unbalanced as I had been but my walking was becoming more and more exaggerated. I could

not carry anything and walk at the same time. The extreme fatigue continued to be a problem and the involuntary movement was more frequent and getting annoying. (The involuntary movement would happen while I was lying down.) I was also experiencing muscle spasms in my legs.

· Sunday – This was a particularly low day. I had gotten so much worse in just one short week. At this point, I could see my symptoms were getting progressively worse every day and that every day from morning until evening I was getting worse. Sunday morning I was able to get around church under my own steam. Holding onto someone or something was helpful but not necessary. By Sunday evening when we left the Sunday evening service, I could only make it out of the building with a lot of help from my 13-year-old daughter. I immediately left church and drove over to my parent’s house so I

could borrow a cane from my dad. I knew I was in trouble and something needed to be done as soon as possible.

· Monday, September 25th – I called my primary care doctor and made an appointment to see her that morning. I had two friends go with me for physical and emotional support. At this point, I was scared and nervous about my prognosis. My GP had nothing helpful or constructive to say, even though she could see my deterioration over the past week. I asked one of my friends to take me to Henry Mayo’s Emergency Room and she did. (I have since changed primary care doctors.)

Please allow me to digress slightly for a moment. I know I said that all of this came on suddenly and, obviously, it did. However, in retrospect I can point to four things that were going on this summer that were indicators that something was going on inside my body. (I also shared these things with the doctors I saw at Henry Mayo Hospital also.) They were as follows:

1. Heat sensitivity in my legs – Summer 2005 my family lived with my sister-in-law for several months. My husband and I regularly spent time in the Jacuzzi at her condo. This summer every time we went to her house to go swimming I had a difficult time getting used to the hot water in the Jacuzzi. It would take me forever to get in the water and then I distinctly remember leaping out of the water one time because my legs felt like they were on fire. My arms were fine, my back was fine – it was my legs that were burning. I had never experienced this before this summer and at the time, I just dismissed this sensation as

the water or air temperature being hotter than it was the year before. (My husband later told me that the water was no different this year than last year.) I now realize that this was probably a pre-cursor to my current problems. Currently, I experience burning in my legs if I am wearing dark pants or skirts and I am standing or sitting in direct sunlight.

2. All summer long, my legs felt like they were retaining water. Whatever I would do to try to eliminate this water retention feeling failed to work. (I tried water pills, lemon in my water, and eating more grapefruit.) The fluid retention feeling continues to this day.

3. As I said previously, I was losing my balance at random times for several weeks before the onset of my more serious symptoms.

4. For about six or more months I have had the sensation that a drop of water is rolling down my leg. This occurs in random places on my legs. Of course, when I look at my leg there is nothing there. I thought this was odd at the time, but never would have thought it was significant until now.

This is what I experienced at Henry Mayo Hospital --

When I arrived Henry Mayo they took my physical problems very seriously. By the time I made it to the ER I was walking so slowly that a turtle could have beat me in a race. My left hip was swinging out as I walked, my legs were incredibly weak, and my legs could barely separate as I tried to take a step.

The Emergency Room triage nurse took me in immediately and Dr. Ziemba met me at the gurney they took me to. Dr. Ziemba was very concerned about me and began running tests. In the ER they did a CT-Scan, a Lumbar Puncture, and blood work. Everything came back negative but because of my symptoms, it was obvious that I was not “normal.” They admitted me to the hospital where I would spend the next 4 days.

I saw three doctors while I was in the hospital. I saw an Internist/Hospitalist, a neurologist, and an endocrinologist. This is what happened with all three doctors…

· Endocrinologist – I have been seeing this doctor since summer 2000. When I was pregnant with my 5th child they discovered I had a thyroid nodule. I had a biopsy and the nodule was found to be benign. I did see this doctor on a regular basis until 2003, when we lost our medical insurance. The reason I saw this doctor at Henry Mayo was that the only abnormality they could find in my blood work was in the area of my thyroid. My thyroid levels were all within the normal range but my TSH levels were undetectable, which they found odd. The endocrinologist examined me and did a

thyroid scan, but didn’t feel that the problem with my legs resulted from anything relating with my thyroid. I will make a follow-up appointment to see him again.

· Neurologist – When he came to my room, his first response was to say that he thought I had a virus in my legs. I was taken aback by this, because I expected a thorough examination before he came to any conclusions. He did examine me for about 5 minutes and said he would order an MRI of my thoracic spine. I wanted him to MRI my brain too, but he didn’t seem to want to do that. (My Internist pushed for the MRI of my brain, which was later done.) The neurologist seemed to think something was wrong with my back, or that I had a virus. After my MRI came back negative, he sent me home stating

that I probably had a virus in my legs that would resolve itself in 2 weeks time. If I wasn’t better by then I needed to follow up with my primary care doctor.

· Internist/Hospitalist – This doctor (Dr. Kahn) was by far my favorite. He really seemed to listen to the physical symptoms I had experienced and he explained what was going on in a very clear manner. He explained that my reflexes were exaggerated and that pointed to a problem with my nervous system. About a week after I was released from the hospital when I was getting any better, I contacted Dr. Kahn again. He told me that he had never agreed with the neurologist diagnosis of a virus and he had thought from the beginning that something neurological was going on (based on my reflexes, which were greatly exaggerated – as

they still are to this day). He told me I needed to get a second neurological opinion at UCLA.

At the time I was released from Henry Mayo, I was sent home using a walker. I was also slated to receive in-home physical therapy twice a week. I was thankful for the use of the walker, but it was a very humbling experience, especially since I had considered myself a healthy person.

October 19, 2006 I finally made it to UCLA neurology. There I saw a resident and she conducted a very thorough examination that lasted about 45 minutes. I met with the resident and the attending before I left and I felt assured at that time that I was in good hands. They seemed concerned for me and my well-being; however, they had no answers for me and no solutions as to how to get my legs working again. They said that I would have more blood work done, an MRI of my C-spine, and an EMG. It took several weeks before the MRI was done and then I drove that MRI and my previous MRI down to UCLA to have the resident look at them. It took her an entire week to look at the MRI and call me back with the results.

At this point, I need to backup and fill you in on what I had been up to after I saw the UCLA neurologist. (This is where it really gets really interesting!) When I left UCLA, I felt hopeful but as I said, there were no solutions to my underlying problem – I could not walk or function anymore, as a 39-year-old wife and mother should be able to do.

I have two friends from my church that have MS. From the first moment that I realized that I had a problem, I thought that my physical problems could be due to MS and I started talking to them about this condition. Both of these ladies are on LDN (low dose naltrexone) and they both had wonderful things to say about this medication, even though neither had experienced a dramatic breakthrough with LDN. One of them called me to tell me that her doctor was switching her from the 3 mg dosage to the 4.5 mg dosage. She told me that she would have about a dozen extra pills and if I wanted to I could try them and see what happened. I had already done some research on LDN and knew there were little to no side effects. I talked it over with my husband

and prayed about it and then decided to give it a try to see what would happened. Since I had been told in the hospital that I did not have MS and the doctors at UCLA told me it was doubtful that I had MS, I really figured that the LDN wouldn’t work for me. I thought of this more as an experiment, not as a solution to my problem.

On the evening of Monday, October 23rd I took LDN for the first time. I did not notice any difference on Tuesday but then on Wednesday evening I was beginning to feel some slight changes. I was walking faster and my legs were able to stretch further when I walked. My left hip that had been swinging wildly as I walked was starting to calm down some and come into alignment with the rest of my body. However, at this point, I was thinking it could just be a coincidence.

By the following afternoon (Thursday afternoon) I KNEW there was no coincidence. I was so much steadier on my feet, I could walk without a cane, and my walking speed was increasing. I was so shocked and amazed. I felt that I had been given a second lease on life!!

From that point forward, I have experienced nothing but improvements using LDN. My walking is very normal, my gait has dramatically improved, and my physical stamina has improved, even though I still find myself very tired in the afternoons. I won’t say that LDN has cured me, because it hasn’t. I can still feel things going on in my legs – weakness, unsteadiness, knees that don’t bend well sometimes, my left hip sometimes drags – but the biggest difference is that my brain control my legs again. Before, my legs had a mind of their own but now my brain tells my legs what to do and they do it! I still experience twitching in my legs, some mild muscle spasms, and the “water rolling down my leg feeling,” but I can walk, drive, and function

again. It is nothing short of a miracle! (I was able to get my own prescription of LDN from a doctor I saw and paid for myself.)

Now, back to UCLA – my resident neurologist called last Thursday (11/9/06) to tell me that according to the latest MRI, I do not have MS. I asked her what I did have then, and she had no answer for me. She seems to have dismissed me as a nut case, because I am so convinced that the LDN has worked for me (she had never heard of LDN before I brought it to her attention).

Update:

December 2006 – I experienced a couple “mini” relapses when I became extremely exhausted or walked too far (for example, when I was out Christmas shopping). With proper rest, I usually was better within a few days.

January 5 through 13, 2007 -- I decided to conduct an experiment. I went off LDN for several days to see what would happen. Would all my symptoms return as I was told could happen? Within three days, I began losing my ability to walk again. I went out to lunch with my sisters-in-law and walked into the restaurant just fine. However, by the time I was leaving it was like I felt the LDN leaving my body and my walking became much more slow and uncoordinated. I was off LDN for about 4 days and I had my husband videotape my digression and then progression when I resumed taking LDN again. This provided “proof,” in my mind at least, that LDN is what allows me to walk and function.

February 2007 – I rejoined the working world again, and took on a new tutoring student who came to my house 2 days a week. This was a huge accomplishment for me!

February 2007 – I upped my LDN dosage from 3.0 mg to 4.5 mg. This transition was almost seamless and I didn’t experience any adverse side effects.

In the Spring of 2007, I went back to UCLA neurology several more time, even seeing an MS Specialist at one point. In May 2007 he requested that I have my MRI’s redone because he felt the first ones I had done were of poor quality. These MRI’s were retaken but they yielded the same result – I am “normal.” Since, I still feel that I do have neurological issues; it is frustrating that they can’t “see” neurological problems on my MRI.

June 2007 – I experienced another relapse of old symptoms and had to use a cane again for several days. I was under a period of extreme financial, emotional and physical stress and my old walking symptoms reared their ugly heads. I spoke with a pharmacist at Skip’s and he recommended that I up my LDN dosage from 4.5 to 6.0. This did the trick! Within 4 or 5 days, my walking had stabilized again and I felt much more like myself.

Summer 2007 – I began taking DLPA (DL-Phenylalanine) and several other supplements, such as Fish Oil, Flax Seed Oil, Mangosteen Juice a multi-vitamin, etc. This combination has been wonderful for me and they have increased my energy level by an unbelievable amount. I feel the DLPA has really been the key to renewed energy for me. If I run out of this, I start to drag and feel terrible again. I felt so amazingly “normal” during the summer months of 2007, it was astounding! I took many beach trips with my kids, I was a counselor at my kid’s Youth Group Summer Camp, I spent time swimming, I had a HUGE 4th of July party, and I did all this with a limited number of naps! God was really good to me during this time -- to give me a feeling of

normalcy again was great!

Currently – I don’t feel nearly as “normal” right now as I did then but I’m doing “okay.” I’ve resumed testing kids with dyslexia and have 2 or 3 kids that I tutor on a regular basis. My legs tire easily but I’m still able to do amazing things – like work all week planning and running a wedding reception for 350 people. I try to get out and walk 2 to 3 times a week, but I can’t overdue things or my leg muscles are very sore and I lose some of my coordination. I’m not nearly the “energizer bunny” that I was a couple years ago, but I’m doing very well considering all I’ve been through.

I see a doctor in Palm Springs , CA who prescribes my LDN and he has also prescribed Armour Thyroid (60 mg) because I have many hypothyroid symptoms. I haven’t noticed a lot of change yet (like being warmer) but my weight has stabilized. I see this doctor on a regular basis (several times a year) and he does feel that I have neurological symptoms, even though he hasn’t put a label on what I have yet.

Through all of this God has been faithful and I am so thankful for all He has given me – to Him be the glory!