We do get worried whenever there's a change in our walking ability. The first thing to do is contact your neurologist and get an appt. for an exam. Discuss your symptom changes in as much detail as you can, along with what environmental factors might have contributed, such as increased heat and humidity or lack of sleep.
Sleep deprivation can become debilitating if you get up several times a night to urinate. We need more sleep than the average person, so if we try to get through the day on six hours of sleep, we can eventually become fatigued and weakened.
Season changes can weaken us, too. Our excitable nerves "overreact" to big changes in air temp, pressure and humidity.
So having an exam and discussion with your doc is important. S/he will make a recommendation based on your physical exam and history.
A drug called Ampyra is beneficial to some MSers in improving walking speed. Talk to your neuro about it.
An ankle-foot orthotic (AFO) can correct foot drop and reduce the risk of falls.
Canes and walkers help with balance and weakness, and can also reduce your risk of falling.
Talk to your doctor about needing a scooter/wheelchair. Your safety is what's most important.
I took Tysabri for about 18 months. I don't know how your doc has prepared you for the infusions, but I would suggest that you drink plenty of fluids prior to the infusion and take a pain reliever if you are so inclined.
I stopped the infusions mainly because I was a difficult puncture; I have tiny, well-hidden veins and had to endure a couple of hours of unsuccessful punctures each month while they tried to find a good vein. I ended up spending the whole day at the infusion clinic because of it.
Also keep in mind that the nurse will have to ask you questions from a script each time prior to infusing. They involve asking you about changes in your symptoms since your last infusion. If you answer yes to any of those questions--that is, yes there has been a change for the worst--the nurse will send you home without an infusion and tell you to see your neuro before resuming infusions.
That's all I can remember for now. Good luck with your infusions, I hope you'll tolerate the drug well and that it will help you. Please do give us updates about your progress.
I was abandoned by my husband a short time ago, too, because of the disease, and your concerns are the same I've entertained as well.
One thing that sounds encouraging about your situation is that he is so involved in your disease management. This means he accepts your MS.
Question: Are you talking about the MS less and less because it isn't an issue or a focus right now? Or are you consciously holding back talking about it? You might not feel the need to talk about it all the time, that would be normal. But if you are holding back, afraid that he'll change his mind about the relationship, then I think you should tell him that.
One thing I did do during the six years with my husband was give him an opportunity to come clean once a year. I would say: "Honey, it bothers me that I can't share your physical activities like sailing, things that mean a lot to you. How are you feeling about that?" Each time I asked, he told me it didn't matter, he loved me and would never leave me. At the end of six years, he told me it did bother him after all. He hadn't been honest. I know it was because he loved me and he wanted it to be okay. Having negative feelings towards a disabled spouse makes them feel like they're not good people and they push those feelings away. It's so complicated. I had MS when we met and it was okay with him then. But I did get worse while we were together and that might have contributed to his growing resentment.
When my husband and I separated, I saw a therapist right away. The most important thing I took away from it was that I should have expectations in a relationship/marriage. I wrote out a philosophy of marriage, what I expected from my mate.
I decided that I would put everything on the table next time around, including my anxiety about being abandoned, and ask him to do the same. It does no good to hold back, this is too serious an issue. And i would put it out there in great detail, including discussing the possibilities of disease progression and the challenges we might face: the mobility aids, the care-giving, changes in sexual intimacy, etc.
Full disclosure also does not ensure a happy outcome. But look, it's a big risk for able-bodied couples, too. There are no guarantees.
Which brings me to my ultimate pearl of wisdom: A new relationship is always going to be a leap of faith. It is for everybody, for able-bodied couples, disabled couples, and mixed couples. Without making that leap of faith, without trusting them, we can't fall in love and sustain that love.
So tell him what you wrote here on the forum. If he reassures you that everything's okay, and if his actions match his words, then trust that he's being up front with you. That's all any of us can do.
Good luck with your new relationship, it's awesome that found a new love. Enjoy!
Although I'm sorry to have to welcome you aboard the good ship MS, I'm glad you joined our community to seek support.
Okay, so you've got some abdominal distention going on. I've got that condition myself and it isn't MS-related. In my case, it happens after eating a modest-sized meal. My stomach flattens again the next morning, only to swell out again after eating a meal. Passing gas seems to deflate it right away. A bowel movement doesn't seem to have the same quick result, but it helps.
Questions: Are you visibly swelled out, or do you feel a bloated feeling like you're going to burst out of your skin, or both? Do you have gas pains with the swelling? Are you constipated? Does having a bowel movement relieve it?
If your condition is really bothersome, you should see your primary care doc. Google your symptoms for possible causes. The most popular one is Irritable Bowel Syndrome (IBS). As for me, I'm going to call my gastroenterologist about my problem. It appeared three years ago when I developed gallbladder disease and didn't go away when i got my gallbladder removed. I tried upping my fiber intake, which is what is recommended for IBS, but it didn't change anything in my case. I am not constipated, by the way, so that's not the problem.
But what is causing mine might not be what is causing yours. It's a good idea to consult a professional.
It is impossible to say that your symptoms fit the profile of having MS. Most of what you describe would not be typical of early onset MS. But even if your symptoms did sound MS-related, our symptoms also match a wide variety of other medical conditions. Testing for MS includes eliminating numerous other causes.
The important thing for you is to persist in pushing your doctors to investigate the possible causes for your symptoms until they find the answers and can treat you.
Your descriptions and questions do raise more questions. Sounds as though L might have other medical conditions besides MS. How involved are you in her care? Do you go with her to doc appointments and are you in touch with the team that manages her care? Your questions would best be answered by nurses and doctors.
That said, here are my thoughts on the issues you've raised:
Diet: Sounds as though L doesn't like veggies and fruit. But if gas really is the problem, she could chew on Beano tablets before taking the first bite of food, or another kind of digestive enzyme. Another tasty way to get veggies and fruits is to make smoothies with them. There are lots of recipes on the internet. Eating fresh fruit is a good way to get better-hydrated, too. It's more effective than drinking plain water, and delivers vitamins and fiber besides.
Humidity: Heat and humidity are the arch enemies of an MSer. Our symptoms will worsen on a high heat/humidity day, even when we chain ourselves to the A/C. I do use a vaporizer every night during the winter months, since forced air heat dries me out terribly and causes discomfort. But I'm not convinced that A/C dries us out like furnace heat does. I've never suffered from dehydration with A/C.
If L is parched while using A/C, I doubt that a humidifier is going to be the answer. I'm often dried out from a combo of medication side effects and from not drinking enough fluids with electrolytes. Consult the side effects lists of her medications or ask her medical team about them to find out whether her meds are causing dryness.
I've found relief from using saline nasal spray, sucking on hard candy/vitamin C lozenges, and drinking sugared drinks during high heat/humidity days. Sugar is a better hydrator than water. Gatorade is more effective than plain water. As I mentioned above, eating a few grapes is instant relief from that parched feeling. Fresh fruit everyday! To further hydrate dry skin, I recently switched my soap from Dial to Dove. The added moisturizer in Dove helped and I use half the amount of lotion after washing than I used to. And I don't itch anymore.
Also consult her nurse/medical team for professional feedback.
Padding: My mother was recently in hospice, and they put a mattress-length piece of foam rubber underneath her once she became bedridden and started developing sores on the pressure points of her lower back. So it sounds as though the landlord has provided the best solution. There's also the option of using a memory foam mattress topper. But a lot of MSers complain that memory foam retains body heat, causing the MSer to wake up in a sweat in the middle of the night. I use a memory foam contour pillow and I've never had that problem with heat myself. We're all different.
Again, consult her medical team about her pain issues. A combo of medications, adequate padding, and making sure she changes position every two hours might make a world of difference in her comfort. I would think that her insurance, Medicare or otherwise, would pay for a portion of a mattress topper, they are available in medical catalogues, but L's medical team should be a resource for ordering those supplies, too.
Paranoia: Once more, has she been evaluated by a medical team? Medication might be appropriate if she is feeling anxiety and paranoia. Lots of MSers take anti-depressants for mood disorders, valium for other symptoms besides anxiety. Some meds that treat mood disorders are used off-label for MS-related pain and fatigue, too.
I hope you'll get more responses and suggestions from others here. And by the way, kudos to you for being such a good friend to L and trying to learn everything you can about this disease and its symptoms and treatments. She's lucky to have you.
If you are convinced that you have active Lyme, you might consider finding a neurologist who is also highly knowledgeable about Lyme. Since you tested positive for the antibodies, I would think your CSF should be re-tested and tracked over time. There are neurologists who believe that the two are related, and who have given Lyme/MS patients anti-biotic therapy after immuno-suppressive MS therapy failed.
The general consensus is that if you are experiencing worsened or new symptoms that last more than 48 hours, you should call your neurologist. It might not be a relapse, but an exam by your doctor will help to determine that.