Pain is one of the most common MS symptoms. How do you manage your pain on the bad days?
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Have you ever just rolled your neck, side to side, maybe to release tension and feel, almost hear, what seems to be "rocks" in your neck? Like a grinding feeling but, I don't know how else to describe it... hmm, have you ever run your hands through sand, and pebbles, and have that feeling, gritty, rubbing against each other... but, in your -neck-!? I get this, a lot.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.I have had nightmares dealing with my local VA Clinic. I have heard from other Veterans having the very same issues, I would like to hear from any of you. I have been in touch with the Paralyzed Veterans Association but my VA coverage had nothing to do with them. I have contact information and other information if you are interested. If you have VA coverage, you were working, had a private insurance, disabled due to MS, were on COBRA (you dependents did not qualify for VA Services), and were suddenly contacted by the VA for a re evaluation prior to the normal times. PLEASE CONTACT ME my e mail is email@example.com I worked out my situation but I was down to my last box of Copaxone, and I started the process 4 months prior to that occurring. Be Well RobShare your experience with emerging treatments and therapies in MS. Get the conversation started.Generally, I've tried to do more on days when I have more energy and less on days when I feel sick. But I read somewhere that people with CFS do that and it can worsen their symptoms and that it's better to evenly spread out activity. Which one should I do? I just find it hard to imagine getting much of anything done on days when I am sick.How were you diagnosed with MS? Share here.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?Does anyone know if vaccinations given to patients who are already diagnosed with an autoimmune disease can trigger a severe progressive aggressive form of MS? Is there any regulation or clinical study regarding the effects of vaccination programs for international travel?'Colossal Meltdown" So yesterday was hard. No point in explaining all the details, but suffice it to say, it was enough to drive me over the edge to a colossal meltdown of a proportion not seen since I was probably 2 or 3 years old. I was covering my ears and yelling stop… Unfortunately I realized later it was my own brain I was trying to stop. When Multiple Sclerosis affects your brain it does so in a very insidious way. It affects the actual brain structure, it affects the processing of information, it affects the tolerance level that your emotions can tolerate. Quite frankly MS is a son of a bitch!!! What I realize now, looking back at yesterday, is that I’m going to have to find a way to come to terms with the “monster inside me”. Honestly, I’m not sure if that monster is the MS or that monster is a 2 or 3 year old child locked inside this 47 year old body. Either way, since I can’t do a damn thing about having MS, my only choices are to let it eat me up or to fight back against the monster. I don’t have all (or maybe any) of the answers right this minute, but as long as I’m still asking the questions, I assume I’ve still got a chance to make things better.We are researchers from the Institute of Mental Health at the University of Nottingham currently looking for people living with Multiple Sclerosis to complete a survey about the access people have to technology, and any particular difficulties people may encounter using their phones, tablets and computers. This work is part of a larger project seeking to develop a standardised cognitive screening and rehabilitation for people diagnosed with multiple sclerosis, so that people can get access to the support they require, if necessary. The survey will take approximately 20 minutes and will allow us to better understand any potential challenges that people living with Multiple Sclerosis face when accessing and using technology so that we can better design solutions to fit people’s needs. If you choose to take part in the survey, you will be given the opportunity to enter a prize draw where you could win £50 worth of shopping vouchers. If you wish to complete the survey, please follow the link below. https://nottingham.onlinesurveys.ac.uk/mstechnology If you know of anybody who would be interested any eligible to take part in our survey or wish to distribute the survey to more people, please feel free to share survey link.I have been on Tysabri for almost 2 years now. I have tested negative every 6 months for the PML virus. I have had no side affects that I'm aware of. It is such a intense drug to have my body take on but at the same time I am aware the fact that I have MS and I have to choose what's best for the disease just not sure it's the best cenereo for my body!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! KristinaMy journey started 8 years ago when I had a MRI for headaches. I was told then that I had MS that the images screamed MS. But I didn’t have symptoms that I knew of so doctor and I decided to monitor. 5 years of MRIs and no changes I skipped a year because of “life” 7th year my images showed progression Not a lot but some. 2 doctors want me to start meds but basically my not symptoms are muscle fatigue in legs but strength is good. Thighs mostly they burn just walking up a flight of stairs. Brain fog at times and Fatigue is pretty constant. May concern about the meds are that they don’t help with symptoms they are just suppose to slow progression but I haven’t really progressed. And these meds are heavy duty stuff for your body. I’ve never had any “traditional” symptoms so I’m really confused about it all. I’ve had every test under the sun except LP and there is no other reason for the fatigue or weakness. Have any of your folks dealt with same symptoms and what have you done. Any information is greatly appreciatedI just want to let you all know about an additional resource to speak, talk, express whatever you are feeling each day with the beast known as MS. Also other neurological diseases too. It is "Patientslikeme". It also lets you keep track of how you're feeling on a daily basis and shows you graphs of same. Forums and A great medical record keeper too. Check it out. Hope you are all enjoying an Episode-Free Day.Hi everyone 👍, as you know I’m new to this forum so I’m just feeling my way round. I’ve had MS for a good while now and I’m finding it really difficult, I’m not getting any help from anyone so dealing with this really gets me down. I’ve tried talking to my doctor but he just passes me off to other professionals and when i see them it’s just pure negativity, I’m going to follow this forum with hope of talking to other people with the same conditions as myself and hopefully learn things that may have passed me bye. At this moment in time it’s really hard because my MS is digging in and coarsening me problems but the worst thing is my landlord has given me 4 weeks to leave my flat because he’s selling up and when i involved the council they said i wasn’t a priority so there wasn’t anything they could do, so in a few weeks from now I’m on the street with MS and confined to my wheelchair. Not a lot of justice in the world these days ( well that how it feels anyway) .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".Found out today I possibly have a lesion on my spine. I get dizziness and tingles in my arms and legs at the same time for a few moments. And I’ve lost bowel control. I’ve also stopped being able to swallow properly and I regurgitate often.. I’m checking into hospital tomorrow for my mri and steroids. I’m terrified of losing my ability to walk. I’m just losing function after function in the last 6 months :( anyone else have any of these problems? And thank you for listening to me vent..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 CraigI was diagnosed in 2010, officially, tho I'm told I have had MS since I was 17...40 yrs. My question is, I still don't understand when I am having a flare. Recently I had several new symptoms and problems, and finally my roommate said "dont you think you're having a flare? You better call your doc". I didnt even recognize it, but he did. The doc prescribed a steroid pac that day. 5 days later, steroids were gone, and I felt better. But not all of the symptoms were gone. The severe mood swing and depression is lingering, as is the low grade fever and a few other things. Has anyone else experienced mood swings? I'm usually a super happy person. Now everything makes me angry. I have no patience and I know I'm making it tough on my roommate who is my caretaker. Is this a common flare issue? Thanks for ideas and opinions!
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