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  • Pain is one of the most common MS symptoms. How do you manage your pain on the bad days?

    I have a 30 yo female friend who isolates because of her MS. What can I do to encourage her to be positive and live life WITH her MS, rather than avoid life because of it?

    Hello all. I posted a while back about traveling with MS on vacation. Didn't really get a ton of replies, so I figured I'd share my experience with my wife. We did a first class vacation this year. 11 Night Cruise of the UK, Iceland and Scaninavia. We also spent a couple days in London before the ship left from Dover. Airlines ============ We flew first class with British Air. I was very clear with the airline that we'd need help with the wheelchair. BA was great about this. At every airport, we were paired up with a person who pushed my wife's wheelchair. We were taken through to the handicap lanes and helped us get everything onto the belts for scanning as well as escorting her to the security checks while me and my daughter went through normal security checks. They took us either to the BA lounge or right to the gate depending on timing. When we came back to the US into Boston, they aide even got us through customs in no time flat. I recommend tipping these people given the amount of aggravation and time they saved us. They were invaluable in Copenhagen. That airport sucks. So, the best advice here is tell the airline you need wheelchair assistance. On the Plane =============== Given we were in first class, we did have the option to take my wife's chair onto the plane. This was nice given it sped up recovery of the chair when we got off. Assistance was about 50/50. I ended up having to transfer my wife into and out of her seat. She's on the heavier side and the folks were struggling. So, we worked as a team. I told them what to do to help me and they did a great job. Don't be afraid to take charge of the situation. Tip these folks as well given the assistance they offer. My wife has a catheter with a leg bag. We were on a 6+ hour flight to/from Europe. Since she cannot transfer, we bought a plastic bottle with a lid on it. I was able to empty her bag without too much difficulty. Again, as we were in first class, this made it easier as the seats were farther apart. I used by body to shield the process and had a plastic bag that I hid the bottle in while I took it tot he bathroom to empty. Rinsed it out a couple times to ensure no odors would be noticed. If you have to fly coach, I'd suggest getting a blanket to provide a bit of privacy for you and your companion. Failing that, the airline should have an aisle chair to help move your partner to the toilet or into a more discrete part of the plane. Be up front with the cabin crew and they will make life so much easier. Hotels ================= When you make a reservation at your hotels, ask for handicap accessible rooms. All major hotel chains can usually accommodate you here. The primary piece of the room that is accessible is the bathrooms. They will vary from having a roll-in shower to sinks that have clearance under the sinks so you can roll up to them. Some hotels even offer panic cords you can pull to get assistance. You may need to tell the hotel to "arm" them so that someone will know if you pull it. They disable this to prevent false alarms if a kid happens to yank on it. Check with the hotel for details. Thresholds are your enemy for wheelchairs. Hotels in Europe seem to have issues with these. While not huge bumps, they can cause issues trying to get over them. Use caution the first time you go into the room. If your partner has trouble moving on their own, I suggest you bring a bed strap (probably a better name for it). If possible, you can loop one end around the bed leg and this will allow your partner to help roll-over. We have this at home for my wife and it is a big help. Transferring in/out of bed into the chair is tricky as you won't have a hoyer with you. Use a gate belt if you don't have one already as a backup. If your partner can transfer by means of a slide board...be sure to pack that as well. London Taxis ============= Ok, so this was the biggest pain for us. In London, the black cabs are wheelchair accessible. However, once the chair is in the cab, there isn't a ton of room for much else. One person and maybe a suitcase. We had to split up into two groups. My wife and daughter in one cab and me in the other with our bags. If you book everything through a cruise operator like Disney, they can handle getting you transport for you and your partner. They'll hire a private van to take care of you. We didn't do that. I'll explain that later. Transportation in other cities =========================== If you are not going to use the transport services offered by the cruise line, use Google to check the transport options in the cities you'll be traveling in. Call in advance and verify that they offer wheelchair service. If your partner cannot walk or self transfer, you must be very explicit about this. More often than not, they assume you can transfer into a car and they'll put the chair in the trunk. You need to be very explicit even when you get to the destination...keep restating that "he/she cannot transfer". Disney Cruises ====================== As I'd mentioned before, we went first class on the trip...so we booked a suite on the Disney Magic that was wheelchair accessible. When I booked the trip, I was very explicit in our needs. They were very helpful for the most part. Now...that being said..this next part is not really important to the accessible part of the trip per se, but it did add to the complexity. When we booked initially, I booked EVERYTHING through Disney including the hotels. The upside is that if you do this, they will get you to and from the airport including the use of a private van for wheelchair access. The downside is that they take you to the cleaners on the cost of the hotel. We stayed at the Grovesnor House in London in the Mayfair district. 5 Star hotel that is a Disney affiliate property. We booked a handicap accessible room for my entire family for $3,000 for 3 nights. I later called the hotel and asked about the rates if I booked two rooms. When I booked outside of Disney, I paid $3,000 for 3 nights and got TWO rooms. The downside of doing this was that since I didn't book the hotel with Disney, they would not pick us up at the airport. We had to make our own arrangements. Now, the funny / stupid part is that Disney DID arrange for us to get from the hotel to Dover. They hired a private van for us. I have no idea why they do it this way, but it is what it is. So, it is up to you how you want to use this information. In the end, it worked out for us and I don't really regret doing that as it saved me $3,000 The Ships ====================== The ship was absolutely great at helping with everything. Only place my wife could not go was to the captain's balcony for concierge guests. Everywhere else was accessible. Elevators were large enough for us all to fit on. Just be prepared to be patient. You may have to skip several elevators as they may have people already in them. Give yourself extra time to get to activities on the ship to account for elevator waits. Getting on/off the ship was easy as well. The gangways are all accessible. Most of the time, they'd have a crew member take my wife down the ramp. On smaller ramps, I could manage it without assistance...but let them make the call. Disney Excursions Ashore ======================= Be up front with Disney and verify that any excursion ashore be accessible. There will be times, however, that they cannot accommodate your party. Europe does not have an equivalent law to the US ADA. So, they are not required to provide wheelchair access. There were two stops on our tour where this was problematic and my wife ended up staying aboard while my daughter and I went ashore. Do a lot of research if Disney can't offer a handicap excursion. Many times, you can hire private companies to handle this for you, but the cost will be paid by you...not Disney. Also, if your tour is late getting back to the ship, Disney will not wait for you as the tour was not managed by them. In Sweden, the ship had to wait for me and my daughter as our tour was late coming back, but if we had booked privately, we would have had to make arrangements to meet the ship at the next port. MS and the Trip ================ My wife brought all of her meds with her in an overnight back as her carry-on. DO NOT CHECK YOUR MEDS THROUGH IN YOUR LUGGAGE. Be sure that the pills are in their original bottle with the prescription label intact with their name on it. This wasn't really an issue, but meds like Provigil are a controlled substance and this could be problematic if they search your bag and find pills in a plain plastic bottle or, god forbid, a plastic baggy. :) As she has a cath, we brought two extra cath kits with us in the event something happened. Bring all of the supplies you need to perform your daily rituals. I didn't bring enough gloves for her bag changes and had to beg some from the on-board doctor. They were very good about giving them to me when I explained the need. I think that about covers my tips and hints. Your mileage may vary. Items in the mirror are closer than they appear. Etc, etc, etc. Thanks Craig

    May is Mental Health Awareness Month. What’s your experience living with MS and mental health? Do you have certain ways to cope with the mental and emotional aspects of MS? Share with us here.

    My husband is scheduled to get his next Ocrevus infusion. He has had an upper respiratory infection for a week. It is severe enough to keep him home from work. I question the wisdom of further weakening his immunity by having his 6 month treatment this week. When your treatments are once every 26 weeks, one more week is a very small margin. His doctor advises to go ahead as long as his symptoms do not include fever. What would you do ?

    3 years ago, at 43, I had my first bout with numbness in my hands, arms, face, feet and legs...sometimes my whole lower body. Those were combined with a feeling of electricity when I turned my neck, some visual disturbances, overactive reflexes, etc. So I sought help with it from a neurologist and went through a rigorous set of tests over the next year-long ordeal. They did it all, ranging from spinal tap to EMG and multiple MRIs, MRA, what seemed like gallons of blood tests. The first MRI showed a lesion, but a year later it was gone. The worst part of the ordeal was that no one believed me. My friends, coworkers, and family thought it was psychogenic. They couldn't see it. They were upset that I was "doing this", and spending thousands of dollars on these tests. They thought these feelings were the manifestation of anxiety. When all was said and done, the neurologist said the cause of my problems was yet unknown. I felt like even he thought it was psychogenic. So when he discharged me from his care, for the good of my marriage, I gave in. I trained myself to ignore future episodes of numbness and keep it to myself. I sought out a therapist because I started to believe everyone who told me I was creating this with my mind. And for the past 2 years, I dismissed any new tingling or numbness, and it seemed to be working. I had no long running episodes...just occasionally bouts for a week or 2 of some tingling, "fake" neurological pain, cognitive dysfunction....all caused by high stress, or so I had convinced myself to believe. My therapist was supportive of this 'mindfulness'. And it was all manageable. I didn't have a neurological disease, I was just manifesting my stress in physical sensations. Right. I just need to stop being so weak minded. That worked for a year or so until a few days ago when I woke up after 3 days of pain in my eye and noticed a grey blob in one eye where there used to be working vision. I tried to mindfulness it away, but it was there the next day and had grown. I could no longer read with my right eye, and it only got worse the following days. I went to see an eye doctor on the 2nd day, and after listening to my description of the pain and sudden vision loss, running an OCT, a visual field test, and putting some dyes in my eye and blinding me with bright light, he said it was optic neuritis, and then proceeded to say that they needed to look for MS and I'd likely need to get an MRI and blood work done. It was only then that I told him of my yearlong ordeal of tests and peripheral neuropathy. I go back to see a neuro-opthamologist next week. All of this is to say, I thought I was done. I thought I had erased the psychogenic disease from my mind through over a year of therapy. I had stomached so much shame for what I had put my wife through during the year where I was experiencing neurological pain and numbness. And now... well, now here we are again. My first thought when they said the words MS was "I can't do this. I'll end up divorced." I wasn't afraid of the possibility of having the disease or of losing my sight, I was reminded of how hard it was on my relationships and my wallet when I tried to reach a diagnosis before. I recall back then that the advice online was to keep pressing forward because diagnosis is so hard and can take years. I read stories of those who said they would have missed diagnosis had they not insisted on more testing, and those who said they had to see multiple doctors before getting diagnosed. But the optic neuritis is undeniable. I can't see in the one eye and no amount of mindfulness is going to change it. It's not certain what the cause of the optic neuritis is, but one of the things I told myself when I gave up on getting a diagnosis for the numbness and pain was that I'd know if it was psychogenic or real if I ever had an episode of vision loss, and I had convinced myself that it would never happen because all of my problems were in my head. So I still have no MS diagnosis, but I wanted to share this story with everyone. I would have preferred that I was wrong and would have been happy to live thinking that my neurological issues were a manifestation of stress and anxiety. I had accepted that shame already and tried to close the chapter on what I thought was my own hypochondria. I've read other similar stories of how difficult it was for people prior to diagnosis and how they were plagued with shame. I'm here to say, whether you get diagnosed with MS or not, the shame is real. It's not acceptable to others for someone to have to muster the strength to pursue a diagnosis. There is a stigma attached to seeking treatment vs just living with it until you have no choice. Anyway, thank you all for listening to these ramblings. I'm sure for some this rings true, and maybe others still think I'm a hypochondriac. What I know is I can't see in my right eye, and it played out just the way others had said online. I had an MRI with a lesion visible, and no others. I was symptomatic, with oligoclonal bands in my CSF, but they were also in my serum and therefore not diagnostic criteria for MS. In one sense, I feel redeemed, but I can't feel good about this issue returning. It's still too early to say what the cause is. It might just be an evil and super rare coincidence that this follows the year of other symptoms, but in terms of probability, I'd say its pretty low that I'd have an isolated incident of optic neuritis unrelated to the numbness I battled for years. Why can't I just win the lottery instead? If anyone has advice on how to get buy-in from family members, I'm listening. My biggest fear are the fights I know I'll have with my wife if I go forward with more costly MRIs and other tests- but I don't feel like I have a choice. I'm not sure yet if she is convinced I'm not faking my vision loss, but the diagnostics and imaging are independent confirmation of the issue. I'll end this by saying its very sad to me that when faced with the possibility of something so scary as MS or losing your vision, the bigger fear is of reopening wounds and old arguments with your family related to previous attempts at diagnosis. 😢

    Hi people, I joined this site last year because it was suspected that I have MS, but after an MRI (showing 2 small lesions) and a (useless) 10 minute consultation with a neurologist it was concluded that I suffer from silent migraines. By now though I have serious doubts about this diagnosis, since I also have symptoms which don't match with migraine (sudden debilitating fatigue, muscle spasms and 'the hug') but with MS, alongside most of the other symptoms mentioned on this site. I also have this intense crawling sensation on my scalp, like an electrical current rippling over my head, mostly from the back towards the front. I would be happy to hear if anyone else in here recognizes this since I'm wondering if it is one of those odd symptoms which aren't on the official list but are common among patients anyway. Apart from that I also experience a sort of 'brain zaps' especially when I'm lying down at night to go to sleep. It's a really bizarre feeling, like my brain is jolting inside my skull. This waxes and wanes over the weeks and months, like the other symptoms. Does this sound familiar to anyone? Thanks for reading so far, I'm trying to get some more clarity since I am contemplating on getting a second opinion. Your input is greatly appreciated.

    Hi! I'm 33, but have had MS since age 17. Recently joined because I've realized I have no real support. Also I have no other MS friends, and it's always great knowing someone "gets it".

    The very first MRI I had back in 2009, when my symptoms began, was examined by a neurologist, which he found a "small, nonspecific lesion" and mentioned I should keep a watch on it with future MRIs. My symptoms then started as left-sided, mild hemiparesis and left unilateral paresthesia. I noticed it in my left thigh, and it gradually radiated down to my left leg and up my back to the left arm. Of course, at the time like many others with unilateral hemiparesis/paresthesia, I thought I was having a stroke. The constant "buzz" and weakness persist for several days before dying out and transitioning to a chronic but transient reoccurance of the same symptoms, but albeit very faint in comparison to the episode that lasted several days. This transient buzzing has never stopped since. One later in 2010, I experience what I believe was the Lhermitte's Sign. I was talking to a customer and leaned my head to the right, about 45 degrees, which then triggered a painful electrical shock jolting down my neck and right side. My grimacing and wincing response to the pain was outwardly noticeable, as the customer asked if I was all right. I told them I was fine, of course, even though my neck and side was burning with the aftershock of the jolt. This carries on for about a year every time I tilt my neck in that same position. Then, two months ago was the doozy. 6 years after my first episode, I experience what I believe is my second full-blown episode. At first, I believed it was a migraine aura with the whole nausea, faint spots in front of the eyes but not enough to cloud vision entirely, and a tension headache. This builds for an hour until I'm released from class and drive home. As soon as I get in the house the spots get bigger and explode into white. They are becoming so opaque, big, and numerous, that I cannot even see to read my textbook. This continues for an hour before my left side explodes and lights up. This is no longer the ignorable and tolerance faint, transient buzzing. The intensity of the paresthesia has increased to a painful level, and I now begin to notice a clear division between my flaming, electric left side and my normal, unaffected right side -- from my scalp to my toes. Realizing that this was no migraine and that it was episode number 2, I begin to write every symptom thereafter. As this is already lengthy, I'll sum that symptom list up. The next day, the total numbness and weakness kicked it. It affects my walking so much I end up with shin splints in my lower left leg within two days. The total numbness and weakness last for two days, and it transitions back into more of the paresthesia. Although every area of my left side was fair game, it kinda came and went like Christmas tree lights set on blink so that a group of lights light up, then fade, then another group lights up, then fades, and so on -- several localized areas of my skin "light up" then fade as other areas begin to "light up" and fade just the same. I actually kinda thought this part was pretty interesting and cool, hah! Then after a day of Christmas tree paresthesia, it fades into similar normal transient buzz, but with greater intensity this time -- more on pair with the intensity of the first episode. And that's kind of my story. I had a second MRI a year after my first episode, which the radiologist and my primary said was normal. When I told him about the lesion that the neurologist found, he said he didn't see it. I just had my third MRI done last week, of course because of this 2nd episode, and it was normal as well. I'm still waiting on an appointment with my new primary to cover the specifics, but I can't help to feel extremely deflated and disappointed at this time, and I'm just so very confused as well. I'm currently in nursing school with a year and a half left, so this second episode is just very inopportune. I had to remediate and come back to perform hands-on skills that I just couldn't do the first time because my left hand was locking up and the paresthesia flared up so bad that I couldn't concentrate. I scrawled like a baby to the instructor that day. The whole ordeal was just overwhelmingly mortifying. I just dunno where to go from here, and I feel like a hypochondriac talking to most everyone else. The neurologist who found the first lesion is no longer in practice anymore, so it makes things harder surrounding the elusive "small, nonspecific lesion" that no one else seems to find. I think I'm just in need of moral support right now from those that understand, because I'm feeling so defeated and have no idea what direction to take from here. ;{

    Hello, Six months ago I started experiencing numbness in my heal. Doc diagnosed me with joggers foot. In November I woke up with numb feet, hands (both sides). I went to the hospital and I was sent home, it was not a stroke. Followed up with a neurologist and a brain MRI was done which was clear. Every lab test you can think of was normal. Doc said it is not neurological. Currently the numbness comes and goes. One foot is always numb. I saw another neurologist who ordered a spine MRI. She says she does not think it is MS because brain was clear and the fact that the numbness has lasted so long and comes and goes. I have no other issues. I did have a MRI of the spine 1.5 years ago for back pain which was clear. I am so scared. Which the doc said could add to the numbness. My neurologist also said the physical exam was normal. Could this be MS. If not what else?

    Join us for the largest, FREE patient education symposium. People with MS, their family members, and caregivers are all welcome to attend. Learn from leading MS clinicians and Tisch MS researchers dedicated to providing the best possible treatments and discovering the cause of MS. This year’s speakers include: Saud A. Sadiq, MD, FAAN, James Stark, MD, FAAN, Armistead Williams III, MD, Deneb Bates, ND, and Yadira LaMazza, MSW When: Sunday, October 6, 2019, 9:30 AM - 1 PM Where: New York Hilton Midtown 1335 Avenue of the Americas New York, New York 10019 Seating is limited and registration is required. To register, please visit https://tischms2019symposium.eventbrite.com Registration is also available at www.tischms.org/events or by calling 646-557-3919. We are looking forward to a great event!

    Hello, My pain management doctor is retiring that part of his practice. His practice is in Seattle , WA and I live in Portland, OR. I am willing to travel some for a great doctor. Do any of you in or near the Pacific NW have a pain management doctor you would recommend? I still see a Neurologist in Seattle, but I am his last MS patient. The rest have the same illness that Michael J Fox has (sorry, cant seem to find the word for it, lol). Right now, I am starting with a general pain management clinic in Gresham, Or., The first thing he did was take my morphine and reduce it by 1/3 without really looking at anything. I do not have much confidence in him at this point. He is also telling me that he isn't getting what he wants as far as paperwork from my doctors and wants me to press them. Is this normal? I thought once a patient signed the release, the doctors could communicate what they wanted and needed. My charts are huge so I don't understand why he is saying he just wants the last few visits and is saying that he does not have enough. I called to make an appointment yesterday and left a message. It is almost 1pm today and I have yet to hear from them. As far as I can tell, it seems this is not going to be a clinic that I will enjoy working with, especially since he wants to see me every month. Any advice is appreciated! I have only ever worked with one pain doctor in the last 13 or more years. Thank you! Kristina

    I am frustrated and unsure of what to do or what's next. I'm sure this is a common complaint here. I'd just like to know if anyone has any tips on what to do or if I should just step back in my pursuit for answers. Here's the rundown: About 8 years ago, I started experiencing frequent dizzy spells and a right hand tremor. I ignored this for months thinking maybe it was low blood sugar or too much caffeine. Until one night I experienced one very odd episode. I was eating at Applebee's and was looking at the tv which was reporting the weather (there was a storm coming in). I started feeling dizzy as I watched the movement on the radar so I turned away from the tv, but as I turned my head the whole room began to spin and I had a buzzing sensation in the base of my skull. It was alarming enough that my husband pressured me to seek answers. So I scheduled an appointment with my GP who referred me to an ENT. The ENT ordered a ENG, CT, and (after I started experiencing parasthesias in my face, arm, and leg) an MRI. The only thing notable was the MRI showed increased t2 signal in the deep white matter right frontal lobe of "very questionable clinical significance." Oddly enough, the ENT's office called to tell me the results of the MRI showed I had issues with my sinuses and would I like to come in to talk to the doctor about them. So of course, I scheduled an appointment. He then proceeded to tell me that nothing was wrong with my sinuses and everything was normal so he was "walking away from this case." I was stunned. The only thing I can figure is he thinks I'm depressed and imagining my symptoms (he actually told me his daughter had experienced this) or he thinks I'm seeking medication. I'm not. I just want to know what's wrong with me. After a few weeks of increasing symptoms, including the hard to ignore parasthesias, a droop in my right eyelid, aches in my joints despite the lack of exercise, tripping when I walk down the hall (this happened several times over the span of a single trip down the hall, could just be my shoes were too grippy or I am just clumsy), I finally called my GP for help explaining my dismissal from the ENT. While waiting for that appointment I started experiencing the parasthesia in my tongue and throat. I sometimes stutter like I've lost my breath in the middle of a word and have to repeat it. And occassionally I will choke on my food or pills. I actually went to the ER when I thought I had aspirated one. I was referred then to a neurologist who assumed I was there to discuss my migraines and tried to put me on a controller med because he didn't like the one I was on. Although this didn't address the reason I was there, I figured there would be no harm in at least preventing the migraines except, this was a blood pressure medication that warned not to take if you have asthma. I do. I mentioned this to him and he said I would be fine. So despite not getting anywhere with my more concerning symptoms, I started taking a new med that within days had me (no joke here) lying on the bathroom floor at work because I felt too weak and miserable to function normally. My heart rate was too low and I was starting to struggle to breathe. I called the neurologist's office to tell them I had to stop taking that med and to please listen to my problems. They scheduled a nerve test. Finally! I felt like I was getting somewhere. Except, I had the nerve test yesterday and it turned up nothing. He said to me, "you are too young for these symptoms." and left. That's right. Just left. No suggestions on what to do now or acknowledgement that I have symptoms that are still not diagnosed. I asked the nurse, "what now?" and she just looked sympathetic and said, "call your doctor?" But see, here's the thing, my husband is starting to think I'm nuts because I complain about all this stuff and there isn't any clear evidence that something is wrong. I'm just tired of the dismissals especially now that I'm getting it at home too. Has anybody felt so frustrated they just gave up on answers? What should I do?

    I'm planning on retiring to Waco, Texas.Now I live in cold, snowy Chicago. I'm concerned about the Waco humidity. Is it huge problem that can't be mitigated? I can't escape the big increase in spasticity in Chicago's cold by staying inside! Any experiences with high humidity areas would be greatly appreciated.

    Share your favorite MS book, and other favorites MS resources you recommend.

    Hi all, I’m 29 and checked in to the emergency room at the hospital 2 days ago. I have been unable to move my toes in my left foot for the last 3 weeks and have a stepping gait in my left foot. I have been having issues with fine motor skills in my hands. I saw a neurologist about my toes and hands andhe said he thought I had damaged my perineal nerve and may have carpal tunnel on my hands. He set me up for a nerve test on January 9th. I started getting weak about a week ago especially in my legs. I was also getting incredibay bad restlessness predominantly in my legs. I called the neurologist and he told me I had anxiety. Over the last 5 days I became weaker and weaker. The night before I went to the hospital I was trying to put together a walk in kitchen toy for my son for Christmas. I kept telling myself it was just anxiety and that my weakness was in my head and that I wasn’t really off balance. I tried as hard as I could for 4 hours and could not complete it. I couldn’t use the screw driver, couldn’t get my hands to work, was falling over sideways while sitting down and realized i wasn’t making things up in my head something was really wrong. I had an MRI when I was in the ER the results showed many ‘abnormalities’ in the left and right side of my brain in the gray matter. (Sorry am new to some of the lingo) I was told I may have MS and they would do further testing. Today I had a lumbar puncture and another MRI to capture regions that were not captured in the first MRI. I am expecting some more clarity tomorrow and obviously hope it ends up being nothing but based on the results I think that’s unlikely. At this point I have to be holding on to something or someone because my legs are so weak and I’m so off balance. I have been sitting down to use the bathroom because of this and today when trying to stand up and holding onto one of the bars by the toilet I fell over. Sorry if I am being long winded, I guess my real question is if anyone had similar symptoms to me when they were diagnosed and more specifically if so has anyone regained their balance and ability to walk. I have a 2 year old little boy and I guess I’m hoping I am going to be able to carry my son again and hopefully have somewhat of a normal life. I know everyone’s journey is different and there are no guarantees. I also know I’m jumping the gun a little bit without an official diagnosis but am really hoping to connect with people who have walked through this. I’m just feeling a little bit alone and uneducated at this point. Thanks for reading, looking forward to hopefully seeing a response or two. I will update once I have a confirmed diagnosis whatver that may be. Thanks!

    My family is taking the trip of a lifetime. We are set to leave for an 11 day cruise later this month. This means we fly from Boston to London and then catch the boat from Dover. My wife has suffered from secondary progressive MS for 12+ years. She’s wheelchair bound and has a superpubic catheter. My questions for the community. 1. Have you done big vacations with your spouse/family member who had MS? What were the trouble spots? 2. We’ll be on the plane for 6+ hours. Has anyone ever had to deal with emptying a urine bag? What did you do to keep it discrete? 3. How were the airports in handling the wheelchair/accessibility? I want to make this the absolute best vacation for her. So, I’m trying to cover as many bases as I can. Thanks in advance Craig

    Does anyone experience lengthy diarrhea? This has been bothering me for months. I went to gastroenterologist and I have nine bottles that I have to fill. So far I have not been able to accomplish this. It's like having to go for urine tests. But now this time, it is poop on demand. Earlier I did have a problem with urinary tract infections. Finally that went away and instead I have diarrhea. These darn problems with MS.

    My family is taking the trip of a lifetime. We are set to leave for an 11 day cruise later this month. This means we fly from Boston to London and then catch the boat from Dover. My wife has suffered from secondary progressive MS for 12+ years. She's wheelchair bound and has a superpubic catheter. My questions for the community. 1. Have you done big vacations with your spouse/family member who had MS? What were the trouble spots? 2. We'll be on the plane for 6+ hours. Has anyone ever had to deal with emptying a urine bag? What did you do to keep it discrete? 3. How were the airports in handling the wheelchair/accessibility? I want to make this the absolute best vacation for her. So, I'm trying to cover as many bases as I can. Thanks in advance Craig

    My rant today has to do with certain, seemingly well intentioned news articles. They often contain an embedded message that reinforces a myth about the nature of MS and those who suffer with it, that aggravates many of those who suffer from MS and their caregivers. Such stories usually include something like, "Jane, who was diagnosed with MS, is such an inspiration. She runs 2 marathons a year, swims 5 miles each day, and lifts weights every day and teaches a weekly zumba class. She really shows what you can accomplish in spite of MS.’’ As a longtime caregiver for my wife who has MS, I can't tell you how many times my wife and I have fielded well meaning comments from friends and colleagues, who've read the article about " Jane" or some other MS Superwoman or Superman, and they'll say things that imply that if my wife "would only set her mind to it, like "Jane" did in the article" or if she'd only "be more of a fighter", she'd be able to accomplish more with her life. As those of us who deal with MS in real time know, MS occurs with varying degrees of severity, advances at varied rates, and causes symptoms that range from numbness to debilitating fatigue to cognitive impairment, to the inability walk, see, hear, speak or swallow. The ability to run marathons and conduct zumba classes are often the first things an MS patient loses :) Knowing that these comments come from well intentioned people, I try to diplomatically suggest that the symptoms of an individual's case of MS are usually the limiting factors in their lives, not the individual's attitude or willingness to fight the symptoms. I guess it's part of our culture to embrace the whole Protestant work ethic/rugged individualism thing, that says that anybody can do anything, if they'd only put their mind to it. That would be great, If only it were true!

    Resentment. It's a loaded word. If you mention the word to a psychotherapist, you'll probably be told that it's harmful and that you "shouldn't" be resentful. It's OK, they say, to be angry, disappointed or depressed, but don't be resentful. I'm here to say that as a caregiver for someone who has MS, I'm damned resentful! I resent the fact that my wife, for no apparent reason, is saddled with this disease. I resent the fact that "the best years of my life" have been overtaken with caregiver's responsibilities, preventing me from doing so many things that I want to do. I resent the fact that my friends and coworkers so casually do the things I'd like to do and probably take their life situations for granted. I resent the fact that many non-caregivers romanticize the chronic caregiver role. I resent hearing (yes, I really have heard this) caregiving for a loved one with a chronic disease is like preparing chicken soup for one's spouse when he or she has a bad cold, just for a longer period of time. I resent the financial impact my wife's MS has had on us. My resentment is focused. I don't resent my wife. I don't resent the people who don't and can't understand. I don't resent the people who have the freedom to do what they want with their time. Bud do I resent my wife's MS and the life situation it has put me in? You better believe I do. There. I said it. I don't think it was harmful. To the contrary, it felt good to just to put it out there. Do you feel resentful?
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