The lab had closed by the time my appt was over. I also have to get a mammogram this week. Any bloodwork can wait until then. I don't have droopyy eyelids. What I do have could simply be axon damage from a prior relapse. That's what I'm hoping for.
Thank you both, for the kind words and the information. I hope you both have a great week.
Tammy
Hi Tammy, I´m sorry this is going on, it must be awful :-(. The muscles not being able to hold your head and the swallowing problem. I have had a bit of an experience of the swallowing problem, but it was rather mild both times. It was for a month or so last spring and also in Oct.2011.
Both times I woke up once in the middle of the night, swallowing saliva the wrong way and could not breathe. Very frightening feeling. I sure hope the neuro will figure this out and be able to help you!
My best,
Dagun
Tammy,
The MG test is a blood test. Is he testing for MG with MuSK? Or standard MG? I was tested twice for MG, both negative and I am waiting on the MuSK test results, the process takes at least 2 weeks, in the lab. Regular MG testing, is quicker. If he thinks its MG, did he start you on the meds (Mestinon)? They are supposed to help and are pretty benign, for side effects.. I think my days are better on the them (slightly), but still not great. They haven't helped my droopy eye or made swallowing easier, thus the MuSK test. They hope I have the results Tuesday, same day as my second MS opinion.
Good luck and Keep us posted,
Maureen
Hi,
I met with my neurologist yesterday. He told me again that he is certain I have had MS for many years, but he is concerned that I may also have myasthenia gravis. The additional in office testing didn't go well... It was too late in the to get any more testing done. In the meantime, we (including my neurologist) are hoping it's just old damage- perhaps the kind from damaged axons. At any rate, we are not going to cracking open my chest to remove my thymus yet. Now I get to wait and see what happens.
I will probably test negative for MG too. I'm not too worried about it. Just about everyone on this page has gone through the same things I have been worrying about-so obviously MS can cause these symptoms. I guess my docs just have to be careful.
Hugs to you all, and thanks for the support. I'll let you know what happens.
Tammy
Hi Tammy, I have dysphagia, its a swallowing problem caused by the MS. It caused aspiration pneumonia earlier this year, spent 3 days in the hospital and it made me sick for 5 months.
I would definitely talk to your neuro when you see him/her and have that checked out.
That was not easy to write, I cannot come up with words..most of you know what that is like.
Get back to us..and good luck.
hugs, meg
Tammy, I didn't read through everything. I did have a similar experience to what you are describing. During a flare I would wake up choking or feeling like I wasn't breathing or something. Balance and Coordination was an issue. I aspirated on anything I ate and drank. I had to take it slower and at the time had no idea I had MS. It got better but I still seem to struggle with coordinating what I eat and drink sometimes. Hugs. Let me know how it goes with the tests.
Tammy,
I tested negative for MG, though I hear often people do, the meds for MG didn't help either. I was just tested for MG with MuSK antibodies as the symptons are similar , just the treatments are different. Swallow test is a very minor test, but my guess would be it won't be the last test you do. I have had them all.
Good luck,
Maureen
So, it looks like we're going to do a swallow test. We may do a gastric emptying study. Finally, I will get blood tests to look for MG. I'm tired just thinking about it.
Tammy
Hi Tammy,
Im still lurking around the forum at times after being worked up for MS recently. Everything came back negative and I was told that migraines were the culprit of some things i experienced similar to what you describe. I had a period where my left-sided swallow muscles felt less effective at swallowing compared to the right. It felt as though I only had swallowinging ability at the top of my throat, not at the bottom. I also felt like I had a golf ball sized lump in the left side of my throat and swallowing little things became difficult. I just had to make sure I had water on hand if I was taking medicine or eating and had to watch how well I chewed my food. I dropped 15 pounds in those 3-4 weeks. Everything cleared up on its own but now I know what you mean when you say your throat and neck feel strained. My voice still becomes hoarse no matter how many times I clear my throat and my head feels like a bobble-head sometimes.
The strange thing to me was that I dont remember having migraines or even any bad headaches at the time this all started, but my neurologist felt migraines were the cause. She said we can have stroke-like symptoms with migraines, not sure if you have migraines, but is there a small possibility this could be true in your case? Im just throwing out an idea here :) I had never heard of this before.
I hope you can get an answer soon, Feel better until then,
Marell
Hi Tammy,
I have all those symptoms, except I wake coughing, like I'm fighting a cold. Not choking. They do need to determine if it's neurological or not. I had an endoscopy and they widened my esphagus slightly. It helped for a while. They did prescribe prescription strength Prilosec, which helps fight the heartburn that I have. They have determined it's neurological in my case. But have offered no relief yet.
On an earlier post, people said that the best thing for this is speech therapy, which really might help you. But it all starts with the neuro or your PCP, in my case my PCP, sent me to both a neuro and a specialist. I have had swallow tests, and an endoscopy. Expect both. I have lost 20lbs in the last 5 months.
Good luck and let us know how you make out.
Maureen
Okay, okay! Consider my bum kicked, and me properly motivated!
Hey Tammy, this is your official community kick in the buttox!!!
Why on earth are you holding back important information from your neurologist? Girlfriend it sure doesn't help you or do you ANY good in the short or long term! nag nag nag, blah blah blah, pot calling the kettle black, nag, blah blah, worrying for worry sake, nag, blah, you've got to be your best advocate, nag nag, put your big girl panties on and just do it!!
HUGS......JJ
Someone else mentioned that possiblity too. I hope not... But I do have many of those symptoms too. This is part of why I am afraid to mention it my neuro... I know it's dumb, It's a good thing I'm going to see my doctor soon. Thank you so much for the hug, blessings, and prayers. We all need them very much!
(((Hugs,)))
Tammy
Hi Jen!
Hopefully your left cheek didn't puff out quite as bad as Dizzy Gillespie's! (LOL at the mental picture!) Not a good look for a woman! I can't whistle anymore either. I used to be pretty good too.
I have never played an instrument. I wish I had learned, but I was more of a bookworm. My hobbies were always reading (which thankfully I can do again!), and designing clothes- which I can't remember how to do. (I still have all the patternmaking tools, just in case I remember how to use them!) Seriously, I can't even remember how to thread my sewing machine for the last many months! So irritating!
Tammy
Hey Tammy,
This is Tammy:) from Limbo and I was reading your post and just thought I would mention MG. Maybe you have ckd it out already but I have a dear friend that has MG and she was first told 5 yrs ago she had MS but almost 2 years ago she had a test and was told it was MG.
All the sx's are very much hers.
The Lord put it on my heart to reply and share this info.It could be worth asking your Neuro about.
I will be lifting you in prayer and always wishing the best for you.
Hugs and blessings,
Tammy:)
Aspiration or problems swallowing can be a real issue. I've tried to drink coffee and ended up spitting it out, because it was trying to go down the wrong pipe. Apples or crackers are a problem - all the little bits and the juice hang out back there, and it's like the mouth doesn't know what to do with it.
I have a hard time whistling, of all things - I used to be a great whistler, and now I can barely get out a note. My jaw and tongue get especially tired at the back on the left side.
I've had mouth issues for a long time, and it really started when I began to learn an instrument. Wind instruments were fine, but as I got older, I had to switch to instruments with larger mouthpieces, because my mouth couldn't fit tightly enough around the smaller one. In college I started to notice that my cheek had a hard time staying 'in.' The muscle that held my left cheek in when I blew air into the instrument would puff out like Dizzy Gillespie's.
The most important thing is to tell your neurologist what's going on. I told my PA, and she suggested I might want a swallowing study. I'm not so sure there's a point - I already know that the muscles at the back of my throat aren't working right!
Hey JJ!
Even though you live around the world from me, it seems like you know me very well!! I am going to report all of this to my neuro (I was really hoping it was for some other reason), but it may well be that I am overdoing it again!
I love the expression you use "burnt toast"! I use it now too! (Oh, and it's a speaking part, not singing. Trust me,no one wants to hear me sing, LOL!)
Tammy
Have you been able to manage any of it?
I apologize, I didn't mean to bother anyone with this question. I do have an appt with my neuro in a couple of weeks, but I was reluctant to mention these things... I am starting to feel like a hypochondriac. I know it's stupid, but I get tired of reporting new symptoms... I was hoping there might be some other reason for the issues.
I really wasn't trying to get a diagnosis from anyone. I just wanted to know if anyone else had experieced these problems themselves -MS related or not. This way, perhaps I wouldn't report something to my neurologist that should be reported to say a gastroenterologist...
Still. I appreciate the concern. I will mention them to my neuro, and hopefully he will have some idea what is causing the problems.
Thank you,
Tammy
I concur with Jane1975!
We are here for support but not in lieu of medical attention that you NEED!
Please let us know when you have made your appointment!!!! (pushes you to dial that phone number of your doctor) - Ha dont I wish I could virtually do so!
Not one person here can tell you if your swallowing difficulties are due to MS related issues or structural or otherwise. Some can say, "Yeah I have that problem before or issues before," but can not tell you if it is part of MS, relapse or otherwise. So this means you need to make an appointment.
Hugs and stuffs
Lisa
Tammy: As you know, the feeling of food getting stuck in your esophagus and the sensation of choking could be caused by neurological problems or by something completely unrelated to MS. Either way, you need be evaluated to ensure your own safety (i.e., make sure you don't choke), and to ensure your long-term health. If your swallowing mechanism isn't working properly, your risk of cancer and other long-term problems increases.
This forum is a wonderful place, but it is no replacement for medical attention. Talk to your doc. Ask for a referral to a specialist. If this is a recurring problem for you, they need to pull out the tiny camera and take a look inside to see what's going on. Have you ever had an endoscopy?
Best,
Jane
Hey Tammy,
My 2 cents is that you may not be in a relapse but 'continually' over doing it. I look at it this way, muscle is muscle, so if walking too far weakens those leg muscles, then why not your oral muscular system too. For me this part " I feel strain, and exhaustion in my throat, jaws, and voice when we sing (at church). I usually can't finish a song. My voice changes, or go away. The same thing happens if I have to speak for an extended length of time." was the biggest clue to what could be going on.
Cheers.........JJ
PS good wishes for your singing duo! :o)