What do I do?
 

Been having more issues with walking.

Last time I tried to complain to a doctor about it, I felt like I wasn't being taken seriously. How do I get them to listen?

Why is it so hard to get taken seriously by medical people?

i don't know erin but i know what you mean.

have you had an EMG? that will create "documentation" that a dr can't deny.
wonder if that might help.

can you take a video of how you are walking that you can show the dr?

if you trust your pcp maybe he can intercede for you and request they see you.
can you take a friend or family member to the appt with you that will back you up and advocate for you?

otherwise maybe you need another dr.

I read something on another MS board the other day that was presented as a "joke" but it's not that different from my experience. I hope it's not offensive.

What's the difference between a neurologist and God? God knows He's not a neurologist.

Good luck.

I'm sorry you're having issues.

I can relate to what you're experiencing. My walking has gotten terrible. Sometimes I think I'm already PPMS instead of RRMS. My Neuro wants me to start Gilenya once my white cell count is high enough. I wonder if it's too late to do any good. I wish I had changed Neuro's sooner.

I changed Neurologists and it was the best thing I've done. My old Neuro just wouldn't listen to me and I think he was offended by the fact that I researched everything....even stuff he recommended to me. Sorry but it's MY life and I'm the one who has to live with MS. I would think he'd be glad to have a patient who was involved in her own care.

Maybe it's time to look for a new doctor. I told my previous Neuro that I wanted to get another Neuro's opinion on my condition and to see if they had any new suggestions on what I could do to slow this train down. He was receptive......I'm not sure if he was truly willing to let me get a 2nd opinion or if he was just happy to get rid of me. :o

In any event I'm now seeing a great Neuro at The Shepherd Center in Atlanta.

Maybe if you just tell your current Neuro that you'd like to get another opinion since you're getting worse. It's worth a try.

I hope you get some help and, if possible, a new Neuro who'll listen.

I have so many weird things going on lately. The last month, I've had extremely dry eyes. I had to go to the eye doctor today to get a Rx for some eye drops. An expensive steroid drop that I have to use four times a day. Good thing the doctor gave me a coupon. Took it from $170 down to $35.

The dry eyes have probably been causing a lot of my problems, because it affects my sleep. I was waking up almost every hour to put OTC eye drops that the eye doctor had told me a few weeks ago to use. But, it was getting kind of ridiculous how often I was having to wake up to do that. I wasn't getting any real sleep because of it. So, the fatigue just went nuts on me. I fall asleep every time I sit down.

Because I haven't been able to sleep and get real rest, I think that's causing some of the increased walking issues. (hope that's it, and things will get better once the eyedrops kick in so I can sleep).

But, there's other stuff going on too. More numbness, and weakness. I'm going to PT tomorrow (friday), and I'm not sure if I'm going to be able to walk down the long hallway from the front door of the hospital to the PT gym.

and I'm really worried about my dad tonight. He's got the heart issues, and tonight I can hear him upstairs coughing a lot. He hasn't done that in a long time. It's really worrying me. My parents and I seem to all be having health issues, and we're all vying for space for the time to go to our doctor's appointments. We keep having to cancel for each others appointments. (I'm the only driver).

My life is too stressful. I can't deal with it sometimes. I better go to bed, and hope I actually sleep tonight. (well, it's not really "tonight", because it's 5am right now where I'm at)

Stress can make ALL your symptoms worse. I'm living proof of that!

August was an extremely stressful month for me. First, I fell in my bedroom and couldn't get up. My legs were just too weak. And I didn't have my phone with me and the landline phone in the bedroom was off the base so I had no way to contact anyone. I was on the floor for seven hours before my son came over and found me. Not a pretty site.

This caused a massive flare. Well, that and a UTI that was silently brewing. I took an abx and steroids for it. Have you considered a round of IVSM? It helped a little.

I also had a TN attack that affected my right eye and the right side of my face. TN is so painful. I'm not kidding.....it's like having an exposed nerve in your eye and someone comes along and flicks it every few minutes. The pain was unbelievable and I had to call my Neuro Sunday night to get some relief. I got an rx for Tegretol and that has helped tremendously. I still get the zaps but not as often and they are definitely weaker.

I know there's no way to remove stressors from our lives.....heck, just having MS is stressful!

Lack of sleep is also stressful. I don't sleep well and probably get three hours at the most every night. Short of having an IV with sleep meds in it I haven't figured out how to get additional sleep. :rolleyes:

My only suggestion, and it is for your parents, is that they might use public handicap transport? Do they see what they are making you do?

Well, I went to PT today. I almost wasn't going to go, because I was feeling all kinds of bad on thursday.

The weirdest thing happened this morning. I used those steroid eye drops. I woke up exactly twice to put lubricating drops in my eyes. I slept the rest of the time. It wasn't till this afternoon when the eye drops really kicked in that I realized how bad my eyes had been for the last I-don't-know-how-long.

My eyes haven't itched all afternoon. Plus, they're not constantly running during the day today. (the eye drops are making my nose run like crazy though because it goes right down the sinuses into the back of my throat. Tastes just as nasty as oral steroids do)

I really had not realized just how itchy my eyes have been. I'm hoping I have another night of decent sleep because I'm not getting up every 45mins to drown my eyeballs in lubrication.

Only had about 4 1/2 hours of sleep last night, because that's about all I typically sleep. But it was the most continuous sleep that I've had in probably years. I managed to stay awake during the day today, and my brain isn't as foggy as it usually is. Hope this isn't a one-off. I hope it's going to be an improvement. I just don't know if finally being able to sleep is going to be the actual solution for half (or 1/3rd of my problem)

My dad said that I didn't look as tired as I usually do. It's just weird that I never realized how bad I'd been feeling just because my eyes itch. Hopefully I'll be able to get some more sleep tonight, and things will feel even better tomorrow. Just hope I'm not on these steroid drops for very long. I don't like putting drops in my eyes so much.


Now if I can just get my right shoulder to stop hurting. Hurt it last week, and it's sore enough to give me bad flashbacks to the frozen shoulder I had in my left shoulder a couple of years ago. Hope I don't end up going back to the shoulder doctor for steroid shots in the shoulder joint again, because that reall sucked the last time I did that. (well, it sucked, but it was good because the steroid immediately made the shoulder feel better, but do the needles have to be so big? I'm needle-phobic)

Great...something new tonight.

Went to bed a bit ago, and realized that the numbness is more annoying than it was. More numbness in my right leg, and hip. Enough that trying to sleep on my right side is really uncomfortable.

I hadn't noticed this until I went to lay down.

Why is the ms so freaking active with me??? I can barely turn around without some weird ms thing leaping out at me.

Not sure I can sleep now. So uncomfortable.

erin,
this may be barking up the wrong tree but....are you sure this is MS?

could it possibly be something else that your dr should investigate?

I've actually tried asking that. No one wants to take me seriously.


I have no idea what else it could be. (b12 and vitD deficiencies are the only other things I can think of. I'm deficient in both)

It's just driving me nuts that I feel like I have something new popping up all the time. I've asked some other MSers, and no one I've talked to has said theirs seem to be as active as mine is. With new things happening all the time. I feel like that seems to be unusual for ms.

I'm just surprised that for how much I've done PT, and how much I try to exercise, I'm not really getting anywhere with being able to get around better. The thing that annoys me most is the mobility issues, and the fatigue. And the general feeling of sick that I seem to have constantly. I can use a cane for short distances...from my computer desk into the bathroom, and out into the family room. My basement is pretty good sized area to walk around in. I just have to be very very very careful. I won't go out into the real world with just a cane though.


The numbness I think I can deal with, and not kvetch (complain) too much about it to a doctor.

I have issues with my shoulders that I don't think have anything to do with the MS, it's just that shoulder pain doesn't really help much when you're already having problems.

Have you had your basement tested for mold or gases? A lot of times with basements, even if they're finished off nicely and really just seem like nothing more than a subterranean room, there can be issues of mold behind the drywall that could cause some health problems, including a general feeling of sick, but also adding to your fatigue and potentially adding to muscle weakness depending on your body's reaction. Same thing with some of the gases, and not a gas leak like the mainline to a house leaking where you strike a match and blow up, but there's any number of gases released through the ground that might not be detected by your nose, but can reek havoc with your body. If your basement doesn't have a proper vapor seal on it, or sometimes even if it does but your house was just built in a bad spot you can be susceptible to such problems.

Allergies could be another contributing factor and they don't always present themselves as sneezing or breaking out in hives. I'm allergic to some kind of a component found in plastics, and it's not the BHP since even those still bother me... if I'm exposed to them too much. Like drinking those 64 oz of water a day from a plastic water bottle, prepackaged or fill up at home type doesn't matter, I might be able to get away with it for a day with a bit of a headache by the end of the day, two days in a row and I feel positively sick. Not like I'm going to vomit every two seconds or anything but my body hurts, I get so tired, my head will just pound away a mile a minute and I feel like I have a really bad case of the flu. But just having one bottle of juice, soda or water while out and about doesn't bother me at all.

Get me around rugs or carpeting made with some of the synthetic fibers and the same thing will happen. I have to be careful when choosing a mattress, pillows and bed sheets. It's not all plastics and I can be exposed to some, like I don't pour my shampoo or conditioner into glass, so it's a really strange allergy and I'm not sure what it is in the plastics that I can't use versus the ones that I can.

I mean my aunt was thinking she might need to get tested for MS while I was undergoing the wait for my dx because she was just seemingly hit by a brick wall of fatigue, bladder and bowel issues, weakness and mobility issues. And the doctor came back with celiac disease. She went on a gluten free diet and within a month was right back to her usual self. She does fine so long as she avoids it for the most part, she can indulge in the occasional sticky bun or donut, but for the most part she can't eat any gluten or she goes right back down hill again, and she ate gluten her whole life long never had a problem with it till suddenly it was one.

Unfortunately allergies like that can also be quite difficult to dx as they generally don't show a reaction on a scratch test, rarely do allergy medication prove to be effective in treating or reducing the symptoms and about the only recourse you have is to eliminate things until you find out what the silver bullet is, then comes the fun of staying away from it as much as possible.

Hope I'm making some sense, but one of the first things I would do if it seems like the doctors aren't finding any reason for your wonky symptoms is get the air quality tested in the basement. Make sure it's checked regularly for molds, gasses and even pollen though it's underground. And then just pretty much pick something that you have a lot of exposure to on a regular basis and see if avoiding it for a few days doesn't improve your symptoms any. Be it gluten from breads and things, or your mattress, laundry soap, drinking cups (unless you only use glass), favorite blanket, favorite fruit or drink, heck even dairy products... take into account the number of things you come into contact with daily and whatever seems to be at the top of the list avoid it for a week. If there's no change, pick the next item and go another week... If nothing else it gives you something to do while waiting on the doctors to decide what they think they might do and what they might want to test for.

Hoping you feel better soon and that you can get answers :hug:

starz makes a darn good point.

and, she's right to say try 1 or 2 things at a time. it's like introducing foods to a baby. if you give them too many & they react you can't pinpoint what the exact food was & have to start again.