Umm, I Have a Question…

All this month we’re highlighting some of the least talked about symptoms associated with MS. Some of which can also be some of the most embarrassing symptoms to arise from an MS diagnosis. While there is a lot of territory to cover, one of the things that remains the same is that it’s often difficult to discuss these symptoms with friends, family, or even a heath care professional. It’s one thing to mention to your doctor that you are feeling dizzy or having difficulty with heat, but it’s a far different thing to mention that you are having concern over loose bowels or sexual desensitization. While not easy conversations to have, here are some tips and hopefully helpful tactics to use when you have to bring up some of the lesser talked about concerns you may be experiencing.

  • Use Your Own Words: Too often we try and get technical or complex in our explanations of medical concerns. But explain the problem to your physician or medical team in words you understand and using language that allows you to explain what is going on.
  • Be Honest: It’s habit that when someone asks how we’re doing we’re almost totally conditioned to say “Fine, I’m Fine.” But leaving out details or not wanting to burden your physician during a visit could spell out trouble for you down the line. Be honest about what has changed or is new with you when you speak with your physician or medical team and let them know what’s going on.
  • Don’t Miss Appointments: I know this one can be difficult depending on your situation. But making your doctor’s appointments with some regularity gives you an opportunity to be more comfortable with them and for them to get to know and build a rapport with you. Missing appointments too often leaves gaps in your chart and care that might make spotting or explaining unusual symptoms or embarrassing concerns more difficult to confront
  • Keep Records: There are lots of things we document – when our car needs an oil change, when our kids have soccer games, that meal we had last night on Instagram. We document everything from what we buy, to what we think, and everything in between. Make this apply to your health also. Document changes you notice, feel, experience and any information you can attach to it. This may seem a bit much but when you need to recall how long the mouth dryness lasted or your vision was tunneled you will be glad you kept good records. Having a tracker like the My MS Manager app can help you keep all your notes in one place and have them to refer to when you talk with your physician
  • Know That You Aren’t The Only One: We often don’t want to discuss embarrassing or strange things that occur to us or we experience as part of our health, for worry that we’re the only one having this problem. Even if it is a rare side effect or symptom, the odds are you are not the only person who is experiencing it. Put your mind at ease and know that of the hundreds of thousands of others living with a diagnosis, the chances you are the only one are pretty slim.

There are a bevy or symptoms that are less experienced than the more well-known ones, but that doesn’t mean you shouldn’t discuss or get answers for them. Knowing who to ask your questions of is another good point to remember (we’ll call this a bonus one). Deciding to have medical conversations with a medical professional or asking mental health related questions of a therapist or counselor give you the best chance of getting some answers. Yes, your neighbor or relative may be able to answer them for you, but making sure to connect with the right people is key to addressing many of the concerns you may have.

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Preparing for a Doctor’s Visit

Okay, so we all go to doctor’s appointments… and we have to get there early, in order to fill out paper work… and while we’re filling our paper work in the doctor’s office waiting room, we have to try and ‘remember’ everything that we need to write down for the doctor.

So I’m going to share some things that I do, in order to prepare for a doctor’s visit… without forgetting information that needs to be shared.

For starters, I keep a journal. In my journal I keep note of any changes in how I’m feeling or how I’m reacting to medication. It’s also very handy, when I need to write down a question I want to ask my neurologist, and if I don’t write it down right then… I’m going to forget, even if I tell myself that I won’t.

Something I always have on me when I leave the house, (as well as at home saved on my computer), is a medication list. This way, if something was to happen and I have to go to the ER or anything like that, my medication list is always with me.

I can also say that I would be completely lost, if I didn’t program alarms on my phone for upcoming appointments, and to even take my medications! Yeah it’s annoying, but I don’t forget!

Having a list of my medications as well as my journal of how I’m feeling and how I’m doing on medications, etc., really helps when I go to see my neurologist. It also cuts down time that I have to fill out paperwork, which can sometimes be troublesome as I also have issues with Upper Limb Spasticity (in my hands) mainly in the summer months, so it’s not always “easy” to fill out paperwork.

One of the benefits  from keeping things written down  in my journal is that, my neurologist can see what triggered me not feeling better… like I stated earlier, my spasticity gets worse when it’s hotter outside, so I know what has caused the increase in my spasticity. (Mind you, I live in Central Texas, and it’s almost always hot here… so let’s just say “hotter”… like today’s “Real Feel” is 102 Degrees Fahrenheit.)

Now, I don’t carry around a small notebook with me anymore, but I do use my phone to keep notes on how I’m doing. You have to enjoy and embrace technology these days, as the famous saying goes … “There’s an APP for that.” (MSAA does have a mobile phone app, My MS Manager, which offers a journaling feature) It’s all true.

One last tip, if you’re the type of person to forget things easily, like I am see if your doctor would mind if you brought a voice recorder to your appointment. This will allow you to  play back the visit and conversation to yourself when you’re at home. This is especially helpful if your doctor answered some of the important questions you had been waiting to ask.

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