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Date of last update: 10/04/2017.

Forum Name: Neurology Topics

Question: Managing Multiple Sclerosis (MS)

 ravenous_wolf - Sat Feb 14, 2009 3:42 pm

I have been diagnosed with Multiple Sclerosis (MS). In early January I started a prescription of Betaseron and I have a follow-up visit with my neurologist within two weeks. Here are some questions and observations I want to share with her:

1. Pain in my lower left abdomen (began last September) right underneath my left rib cage. The pain has slightly lessened but is there any way to manage it since it is very annoying? It feels like someone is grabbing me there.
2. Sleep. I have had insomnia for twenty years and sleep apnea. A few years ago I had a Septoplasty, Tonsillectomy (my insurance denied the UPPP), and lost about twenty pounds. I am currently taking generic Ambien and is it safe to take it every day? I have three kids ages four and under so skipping a day, like on the weekends, makes me feel worn out.

3. Fatigue. What can I do to lessen the impact?
4. Nutrition. Part of my diet consist of junk food so would it benefit me to ask to be referred to a nutritionist?
5. Exercise. I have few exercise habits except walking around my work place three times a day (and around my neighborhood on the weekends. Would it benefit me to get referred to a physical therapist and if so, what should I look for in one?

6. Hands Tingling. I have had that for about four years. Is there anything that can be done to lessen or eliminate it although is doesn’t impact my ability to type on a keyboard?
7. Balance/Coordination. Although it is not perfect, it has greatly improved.
8. Bending/Stooping. Improved.
9. Walking. Greatly improved.
10. Slurring of Speech. Improved (nearly gone).
11. Vision. Greatly improved. I have a lazy eye and my frame broke right before my flare-up last year. The eyeglass shop put the lenses in the wrong place when I took them my identical prescription sunglasses frame. However, a new pair of glasses with a new prescription really helped.
12. Tingling Elsewhere. Greatly improved. It hasn’t gone completely away but most of it is gone.
13. Back Pain. Improved. I have had it since September/October. I was wondering if my spinal tap this past November exacerbated that in any way?
14. Standing. Improved.

Overall, my body has accepted the Betaseron fairly well. I still have to get over taking the injection every other day but I have tremendously improved since my flare-up. In fact, I am not even at a 100 percent dosage yet (almost finished with a 75 percent dosage). So any comments and insight over my observations and questions would greatly be appreciated.
 John Kenyon, CNA - Mon Feb 16, 2009 12:37 am

User avatar Hello -

I'll try and add my thoughts and observations to your excellent list of concerns where I think it might make a difference.

The pain in your lower left abdomen (actually sounds like the upper left quadrant) is probably caused by muscular spasm. There are so many vagaries involved with MS this is probably best left to your neurologist to make suggestions on, since he can view the full patient.

Regarding sleep: fairly recent studies found that there is no significant risk (of dependence of otherwise) in taking Ambien and related drugs (of the same family) on a daily basis for an indefinite period. I'd take it straight through the weekend and feel as good as possible as much as possible.

About fatigue: this will doubtless be a variable, so the best thing for it is to learn to recognize and accomodate those times (days, periods of days, weeks, however long it lasts) by modifying your actiivties accordingly, but trying, still, to get in some form of regular exercise. Listen to your body. It works.

Whether or not you're a fan of junk food, a consult with a nutritionist would probably be beneficial (and hopefully your neurologist will agree).

For exercise, rather than a physical therapist, an exercise physiologist might be a better bet. Look for one who has experience with neuromuscular diseases, and if that's difficult to find, then perhaps one who has worked in a cardiac rehab program, as they are equally vigilant.

The tingling in the hands may be manageable via nerve-blocking drugs, but while taking Betaseron your doctor might advise against this. Worth asking about, however.

Report all the improvements for sure. This is an excellent measure of both the waxing and waning of the disease and the effectiveness of the medication.

Your list contains excellent ideas and is quite comprehensive. Keep up the good work, and if you're inclined, please follow up with us here after your follow up visit with the neurologist. Best of luck to you.
 ravenous_wolf - Sun Mar 01, 2009 11:41 am

UPDATE - My visit to the neurologist

My appointment went fairly well. I actually saw my doctor's partner in her practice so that was the first time I met him. Before the appointment, he had reviewed everything about me, especially all the tests that were done to me at the hospital.

As a result, he was fully expecting to send me to their infusion center for another round of an anti-inflammatory. However, after I stepped into his office, he explained how well that I looked and much I had improved. Consequently, he said that I didn't need another infusion and he answered all of my questions.

TOP Priority
1. Pain in lower left abdomen.
2. Bad sleep (because of my pain in the lower left abdomen).
3. Fatigue.

His response to those three questions was to wait to see what kind of impact the Betaseron would have. At first I wanted some instant relief but I could understand that I just barely got my full 100 percent dosage of Betaseron. Ever since the beginning of January, my injections started out at 25 percent, increased to 50 percent, then to 75 percent, and finally to 100 percent at the end of February.

MEDIUM Priority
4. Nutrition.
5. Exercise.

From a practical point of view, he said that since I have three screaming kids ages four and under, my priority is to get them fed first. He explained that I probably don't have the time to measure things out for nutrition and he is absolutely correct. My kids come first and my own food is really secondary.

As for exercise, he explained that I really don't need a physical therapist or an exercise physiologist because he felt that I had improved so much that if anything, a personal trainer at a gym would be more beneficial. And I could really understand his rationale because when I was at the second hospital for rehab, almost all of the patients there suffered from strokes, head-on collisions, etc and I wasn't at the same physical level that they were at. So instead of joining a gym, years ago I once had a very rigorous work out routine and that is something I can slowly piece together as an exercise format.

LOW Priority
6. Hands Tingling.

His response was to wait and see for the Betaseron to have its impact.

And even though just about the rest of my list of questions were observations of improvements, he was glad to see that I was keeping track of my physical developments. He also very much wanted to see how the Betaseron would do in the next few months.

My top priority, the pain in my lower left ab, bad sleep, and fatigue is something that I hope that the Betaseron can have a positive impact because it is almost as if all three of them are inter-related. I don't want to sound greedy because I have improved so much but if I can get rid of those three things (or greatly minimize them) then the impact of MS on me will have been greatly diminished.

I guess the fatigue is the worst because I need to be fully energized for my job and be fully available as a parent and be there for my wife to help out around the house and get other stuff done.

But overall, the neurologist said that I had looked very well and that I have overcome a lot of physical obstacles. I don't see him again for four months. The other neurologist I saw once told me that in neurology, one month is considered fast so I understand that I just have to wait it out.

But then again, I in no way want to sound greedy because I am so grateful of how I physically improved. So overall, that doctor's visit turned out fairly well.
 John Kenyon, CNA - Thu Mar 05, 2009 12:58 am

User avatar I'm so glad your visit went so well! And I don't think you sound greedy at all. You see, the better we get, the more the remaining problems stand out against the clearer background, so they really do become more noticeable and noxious. But then there's also more energy to deal with them. I hope you continue to improve apace, as it sounds as though the Betaseron is doing a very good job for you. It is slow going, and that's frustrating, but you're doing really well. I'm impressed, and yes, by all means continue to document your symptoms so you can remember what to tell the doctor when you next see him.

Good work! Hang in there, and please keep us updated.
 ravenous_wolf - Sun Mar 22, 2009 5:40 pm

Here are my next batch of questions about Multiple Sclerosis (MS) and neurology. But first, I would like to thank the Doctor’s Lounge for being an excellent source of medical information and especially John Kenyon (if I could, I would shake his hand and personally say thanks).

I no longer feel greedy about trying to resolve the remainder of my symptoms. Originally, I had the impression that a serious disease like Multiple Sclerosis was a no-win situation. But over the past few months since my flare-up I had an amazing recovery so I thought that it was way too much to ask for to clear up what I have left. However, if I can defeat these last three symptoms, then this disease can become very manageable:

1. Muscle Spasm (lower left abdomen)
2. Bad Sleep/Insomnia
3. Fatigue

I don’t know which symptom is worse because they are each debilitating and severe. And even though each symptom is separate, they are very much interconnected and related to each other. My neurologist said to wait and see what impact Betaseron has but I don’t see him for another three months.

My muscle spasm started this past September and it really hasn’t let up. Some days are better than others but it is always there 24 hours a day. It also seems to be different depending on my posture and when I lay down. Are there any non-invasive methods to treat a muscle spasm like this and what are the alternatives?

In many ways I feel that the bad sleep/insomnia is a by-product of the muscle spasm. Even when taking generic Ambien, it is still very difficult to fall asleep and to stay asleep. I already take generic Ambien almost every day (and I pay a heavy price in extreme fatigue whenever I skip a day). Would a different sleeping pill, like Ambien CR, be helpful although I have the impression that a more powerful medication would not have much more of an impact because of the way that the muscle spasm affects me?

As for the fatigue, I never considered it to be a top priority until around January. Consequently, I wonder if Betaseron has made it worse (I started the 25% dosage on January 2 and I didn’t get to the full 100% dosage until the end of February). But then again, the muscle spasm and bad sleep/insomnia contribute to the fatigue. And by the time I get home from work, I am exhausted but I still have three screaming kids’ ages four and under that I have to be there for. So I am not really sure what I can do now to combat the fatigue.

However, I realize that the full impact of Betaseron may very well be slow. But ultimately, if I can get these last three symptoms effectively managed then MS will no longer play such a huge role in my life. So any comments or insight will be greatly appreciated.
 John Kenyon, CNA - Tue Mar 24, 2009 11:44 am

User avatar Consider your hand shaken, virtually at least, and thank you for the kind words. You are, of course, extremely welcome.

The three problems you list as residuary ones are largely interconnected and probably the first two go a long way toward creating the third. The main thing you need to try and do is make the muscle spasms lessen or go away. There is at least one drug which is specifically for this, called Baclofen. I'm not sure how it would mix with Betaseron, but I'm sure your doctor knows about it and has considered it once he feels the betaseron has reached its full therapeutic potential. If the problem is really wearing on you, however, there are other less specific medications that might help, muscle relaxers like Skelaxin or just plain Valium. If it becomes an overwhelming issue I'd at least bring it back to the doctor's attention that way, let him know it's wearing you out, and see if he's willing to try something additional for that.

Those things aside, I'm so glad to know you're starting to see the up side of this thing, that there's always something worse that might have happened, and that this is at least a manageable problem with some days of course better than others -- kind of like life in general. There are ups and downs, but we often come to learn to make the most of the up days (and months and sometimes even years) and to cope with the not-so-up ones. This has been a big adjustment for you to make, emotionally, and you're doing incredibly well. Keep up the great work!
 ravenous_wolf - Sat Apr 18, 2009 3:24 pm

UPDATE – Unexpected Visit to the Neurologist

I was going to prepare another round of questions about my condition but for a totally different topic. Instead, here is the result of my unexpected visit to my neurologist (the visit was three months earlier than the appointment planned for June).

On a Thursday my employer gave an announcement that we are going through another round of layoffs. Since I dodged the bullet last time, I really felt that my time was up (I am the only breadwinner in my household). The following Saturday I attended a big party for the daughter of my wife’s cousin. I was feeling down and a few people at the party commented that my gait and balance was way off so there was concern if I was going through another relapse.

And since I had so many symptoms at a Halloween party last year (which set off the chain of events that then led to my hospital stay and my diagnosis of multiple sclerosis) I then set up an appointment to the neurologist the next Tuesday. Below is a list of questions I wrote up to ask the neurologist.

1. Am I currently in an exacerbation/flare up?
2, How is an exacerbation defined?
3. What kind of treatment should I seek during an exacerbation and what should I do during one?
4. And what are the causes of a flare up (heat, stress, etc.)

Major remaining symptoms:
5. Muscle spasm – lower left abdomen (otherwise known as the MS hug or the MS girdle).
6. Bad sleep/insomnia
7. Fatigue

8. Since #5 and #6 seem to lead to #7, what are my treatment options (non-invasive first) since the fatigue has such a big effect on me.

The response of the neurologist really surprised me. He briefly looked me over and then the first question he asked is whether or not I felt that I was in a relapse. I immediately answered no and I explained that I personally felt that I was just going through the ups and downs of my condition, especially in the evenings. However, since my loved ones were concerned I wanted to check it out. Also, getting bad news at work also had a great impact on me.

The neurologist then explained that he has plenty of MS patients who come in asking the same thing and he reassured me that there was nothing out of the norm for me. He then went on to explain questions 2, 3, and 4.

As for questions 5, 6, 7, and 8, his response was very firm since the last time I saw him. He said that I needed to wait for the Betaseron to have its full impact. But before I could even inquire about taking something for the MS hug he said that he was not going to over-mediate me. He then explained that it takes about six months to a year for Betaseron to “suppress” MS so I will have to wait.

Overall, I was just relieved that I didn’t have anything that needed immediate medical attention so I went back to work after the doctor visit. However, that night I began to wonder exactly what he meant about suppressing MS. In fact, I almost wanted to set up another appointment just to ask him that because I thought that the condition I currently was in was the best improvement I was ever going to get. And I already felt at peace with myself if that indeed was the case.

However, it was just so startling to think that these symptoms could actually lessen (or even go away) so I didn’t want to have any false hope. In fact, it feels that the fatigue is slightly lessening because it is not as bad as it once was a few months ago. There are still times that I feel really exhausted at the end of the day but it is not as often and as bad as it used to be.

As for bad sleep/insomnia, taking generic Ambien every night is now allowing me to get a little more sleep during the night which is lessening my fatigue. The muscle spasm (MS hug or MS girdle) keeps me from getting a full night of sleep but I feel that I am slowly getting more rest.

I am also going to get laid off of my job at the end of the month but I have such a great support system from my wife, folks, and in-laws that I feel that I can overcome just about any obstacle. In addition, posting these questions here has allowed me to become more of an informed patient. My neurologist is a brilliant doctor and I felt confident and comfortable asking him questions about my condition and my symptoms.

So even though this visit to the neurologist was totally unexpected, the outcome turned out well.
 John Kenyon, CNA - Sun Apr 19, 2009 9:49 pm

User avatar I want to thank you for this most excellent update, even though it was the result of an unexpected visit. This is just great. Your approach to working with the doctor is complimented by your doctor's willingness to work with you. This is great symbiosis and I only wish everyone could have this sort of medical relationship. I'm very happy for you.

I'm happy for you even though you've been laid off. You also have a great advantage there, in the tremendous support system you have around you, so this will no doubt work out well even though it necessarily is a negative to start with. Things often have a funny way of working to our advantage despite seeming all wrong.

As for your wondering about "suppressing MS", it is a sort of negative force that must be dealt with. It doesn't go away altogether, but it can be suppressed as well as often going into remission. There are a great many ways it can manifest depending upon the individual, but generally it runs a chronic, relapsing course, but those flareups can usually be managed. Since your initial flareup has been improving with Betaseron and you have a while left to see the full effect. All in all this is a very auspicious start to a crummy turn of events!

Thanks again for the very postive report and please do keep us updated on how things are going. So far, I'd say, very good! As for work, I can only suggest looking for the positives in what appears to be a negative. Hang in there!
 ravenous_wolf - Fri May 15, 2009 12:36 pm

UPDATE – Monthly Report to the Betaseron Nurse

Every month a nurse for the Multiple Sclerosis (MS) medication, Betaseron, gives me a phone call me to file a report on how my body is reacting to Betaseron. In this recent telephone update the nurse asked me how many relapses or flare-ups I have had since going on Betaseron (I began the every other day injections on January 2 of this year). She was a bit surprised when I said that I had none (she said that she thought that I would have had at least a couple by now).

Next, she asked me about the MS Hug/MS Girdle (which hasn’t gone away). They had been documenting that muscle spasm for the past few months. She said that a lot of MS patients only have the MS Hug/MS Girdle for a few hours, a few days, a few weeks, or even a month or two at a time. She also said that having such a muscle spasm is considered to be a sign of a flare-up. Interestingly, the nurse explained that in her experience ever since she has been filing reports that I have been the only person to continuously have had it for so long (since September of last year).

But it was refreshing to explain that almost all of my major symptoms have either gone away (like the slurring of speech) or greatly lessened (like bad balance/coordination, etc). For example, when I take walks around the neighborhood I no longer walk around as if I am drunk. About the half dozen remaining symptoms I have, the three serious ones, the muscle spasm (MS Hug/MS Girdle), bad sleep/insomnia, and fatigue and they have begun to slowly change.

Back in January, Betaseron and my bad sleep/insomnia put me in the Twilight Zone in which I was walking around like a Zombie with extreme fatigue. But the fog of fatigue is finally lifting and I feel like I am becoming a much more normal person. There are times I still get very tired but it is nowhere close to the way I was in the beginning of the year. In essence, the “insomnia” has separated from the “bad sleep” because I can now manage it with generic Ambien. The MS Hug/MS Girdle always makes for bad sleep since it eventually wakes me up but I now get several hours of good sleep because of generic Ambien so I no longer consider fatigue and insomnia to be major issues anymore (just bad sleep).

Perhaps the muscle spasm has lessened just a tiny bit but it is always present (some days are worse than others). In February and March, my neurologist wasn’t fazed at all that I have had this muscle spasm for so long but now I have learned to live with it so it is not wearing me down anymore. At first, I really wanted something like Baclofen but my neurologist didn’t want to overmedicate me. And now, I am starting to think that I really don’t need Baclofen because I feel that I am getting along just fine without it. So that monthly report to the Betaseron nurse went really well.

However, I haven’t had any IV infusion treatments for a flare-up or anything else ever since my diagnosis of last year (my neurologist canceled the infusion treatment he had set up in my February follow-up visit because I was doing so well). My neurologist also explained that a “pseudo” flare-up is just a temporary exacerbation (like from hot weather, etc) but I had never had one so I wonder if it is just living with MS; with some days being better than others? But how do I differentiate between an exacerbation/flare-up, a “pseudo” flare-up, and from the ups and downs of MS?

And, I don’t want to tempt fate but the full brunt of summer in South Texas (brutal heat and hot humid weather) has arrived. I don’t ever linger outside during the hottest part of the day because I know how severely MS patients are affected by heat but I just don’t see myself impacted that much by hot weather (but I don’t want to test it out). But overall, does that mean I am currently in remission from most of my MS? I am still not exactly sure what is meant by remission or remitting.

Also, a drug like Betaseron “modifies” my disease but if I understand correctly, my physical condition will eventually get worse in the future? The reason I ask is that I fully accept that I have physical limitations with MS and I have learned to live with them but my limitations are actually fairly few and not very intrusive. I don’t use a cane and I am slowly starting to have a fairly normal day as I did before the diagnosis. So if I am faithful to the routine of every other day injections of Betaseron, does that mean that I stand a good chance of avoiding any future serious exacerbations/flare-ups?

I feel like I am a totally different person in that I am now more cheerful and grateful, even when getting laid off at work. Here is the link from the Surgery forum in which I wondered from the very beginning if I was experiencing a hernia:


Around the time frame of the above link I was scared about my health and miserable that I narrowly avoided another layoff. However, fast forward to today and I now feel that my emotional recovery is just as significant as the physical recovery. My former employer gave me a generous severance package (including insurance) and I never realized that my mental well being was so contingent upon having such a terrific support system from my wife and family.

As John Kenyon previously said, “Things often have a funny way of working to our advantage despite seeming all wrong” and he is absolutely correct. I feel great about coping with my disease and I feel so optimistic about my future. Overall, I am a very fortunate person and I am so thankful for how everything has turned out.
 ravenous_wolf - Sun Jul 19, 2009 12:58 pm

UPDATE – Finally Got More Treatment

I know that I have complained way too much about my three residual symptoms, the MS Hug/MS Girdle, bad sleep, and fatigue. Unfortunately, there was nothing I could do about it. My neurologist was of the opinion that he was not going to over medicate me even though those residual symptoms were wearing me down and making my life miserable. My next appointment was a follow-up visit with the neurologist (I typically write my questions on a small notepad). Since I was now hitting the six month mark of being on Betaseron I wanted to ask him a whole slew of questions about my condition.

However, the appointment was real quick and he only answered a few questions and that was it. Afterwards, I was really upset although I knew that it was mostly my fault. I know my neurologist is a brilliant doctor but I was still in misery. Instead, I made an appointment the following week with the other neurologist in the same practice (she was the one who initially diagnosed me with MS). This time, I wrote the following specific questions and printed out three copies; for myself, my wife, and one for the other for the neurologist. And I condensed everything down to just five very direct questions:

I have faithfully been using Betaseron since January 2, 2009 so I would like to discuss options of how to manage my residual symptoms; the MS Hug/MS Girdle, bad sleep, and fatigue. I would also like to discuss if the MS Hug and the bad sleep go a long way towards creating the fatigue.

1. Muscle Relaxant
I have had a non-stop MS Hug since September 2008 and at times it can wear me down (most of the time it is a strong pinching feeling although it can also feel like a squeezing). When I started on Betaseron, I was told that I was not going to be over-medicated so I have gotten used to this muscle spasm, although at times it can be overbearing (especially since it won’t let me sleep at night). But is six months now long enough to consider a prescription for a muscle relaxant like Baclofen to manage the MS Hug?

2. Sleep Aid
The MS Hug usually wakes me up at night and it will prevent me from sleeping unless I take something for it. The Ambien that I was prescribed (which I now take every night) is effective in getting me to go to sleep but it is ineffective in keeping me asleep for an entire eight hours because of this muscle spasm. Can a different sleep medication, like Ambien CR or any other, give me a better night of sleep?

3. Sleep Study
The other neurologist would like me to have a sleep study. In 2006 under the direction of my primary care physician I have taken two sleep studies which resulted in my surgeries for a septoplasty and a tonsillectomy. The second sleep study had me use a CPAP machine but I never continued its use after the sleep study (I handed over copies of both my 2006 test results to her). In what ways could the results of a new sleep study help me achieve better sleep, especially since I have had bad sleep and insomnia for a number of years?

4. Physical Therapy
Can physical therapy help me get a better sleep and fight the fatigue?

5. Fatigue
Finally, is there anything else that can be done to combat this residual fatigue that I am still experiencing? There are times that I can barely get through a full day at the workplace.

The original neurologist thoroughly read over my print out and here are the results from my appointment with her:

1. She prescribed the muscle relaxant, Zanaflex; one to two tablets every night. I now take one tablet every night.
2. I remain on generic Ambien and continue to take it every night.
3. She reviewed the results of my two sleep studies from 2006. She mentioned that my voice appeared to have a nasal sound to it so she recommended that I take another sleep study so she could review the results from it.
4. She recommended that I go to Physical Therapy. As I started Physical Therapy, I was so surprised at how much I really needed to accomplish. I couldn’t do certain stretches because I apparently had been hunched over a computer for so many years. Unlike the rehab hospital I was in last year which was geared towards people who had strokes and head-on collisions, this therapy was specifically geared for my needs.
5. She prescribed one to two tablets a day of Provigil to fight the fatigue.

She also had blood drawn from me to test for possible anti-bodies that the Betaseron could have created (and for other stuff but I won’t know until I see the results of that blood test) and to get another MRI scheduled.

Now I am not crazy about taking so many medications like the Betaseron injections every other day, generic Ambien every night, and Provigil and generic Zanaflex every day. I did stop the pre-med of Tylenol one hour before the injection of Betaseron. I just tripled the amount of time that I ice up the rotated spot for the Betaseron injection.

As ironic as it sounds, I hope nothing comes up from the blood test because I have already gotten so used to the injections of Betaseron every other day and I don’t want to switch to another disease modifying drug. I like the routine I have gotten accustomed to and to the really thin needle. And there is nothing that I have to refrigerate. I hope that it is way too soon for the blood test to reveal anything (in the first two months tritated my dosage so I didn’t inject the full Betaseron amount until the end of February).

The Zanaflex was really hard to get used to (I was also a bit scared of it). It gave me a really bad dry mouth so I must have a water bottle beside my bed every evening. The dry mouth is slowly lessening and combined with Ambien, I am getting much better sleep. The stimulant Provigil really snaps me out of the groggy state of fatigue that I am in. If I absolutely have to, I will take two Provigils in one day but usually one tablet is sufficient for me to get through the work day and allows me to spend productive time with the kids.

And I don’t know if I am right now experiencing the ups and downs of MS, a pseudo flare-up, or just a flare up. I have documented my symptoms and many of them have come and gone although the last ones are the worst. I discussed it with my neurologist and the nurse of the medical practice but they don’t think I am having anything too severe. In a way, I am starting to think that the Betaseron is doing its job in lessening my MS symptoms.

I also fully understand that two neurologists, even in the same practice, can have entirely different viewpoints on treatment, even when they are each viewing the same patient and looking at the same data. Neurology is a complex field and Multiple Sclerosis (MS) is a baffling disease. So I accept their two divergent approaches although like in my case, I have to try to attain some kind of relief to continue to maintain my employment, be a good father to my young children, and a be good husband to my wife.

Overall, I feel so grateful for a resource like the Doctor’s Lounge, and especially John Kenyon, because it has helped me become a more informed patient instead of a hapless victim. I realize that a physician, especially a specialist like a neurologist, is very busy and is not available for conversation or to answer broad questions that I can look up for myself. So having very specific questions already printed out that are direct and to the point about what I really need was tremendously helpful (and finally provided some relief to me).
 John Kenyon, CNA - Wed Jul 22, 2009 12:42 am

User avatar Good hearing from you, and sorry things haven't gone more smoothly, but your comprehensive updates are both encouraging and very valuable to those who read the posts here, so I hope you'll continue, and also hope your situtation will improve. Your attitude remains really inspiring and I hope a lot of readers pick up on that. Thanks also for expressing your remarkable understanding of the complexities and trickiness of dealing with a disease such as MS and how two doctors, even in the same practice, can have divergent views on something, let alone what you've accurately described as a "baffling disease."

The best of luck to you and we'll look forward to further updates. Keep up the great work.

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