Soft palate difficulties

[dandb]

Hi there!! First time poster - long time reader. I have a list of "weirdness" that has been going on since Oct. 2007 - undx. of course, but I have learned from reading these boards that I am, most likely, in for a long wait. I have finally gotten the courage to type in and ask this question, because no matter how many posts I read on here, the ALS postings and other websights, I can't find anyone that is experiencing, or experienced this symptom. Here goes:

-Since about 7 weeks ago, occasionally, when I have tried to swallow, my soft palate would not lift. Basically, I try to swallow, my tongue is on the roof of my mouth ready to push the bolus back, but nothing happens. It's a very brief experience - I deal with it by relaxing, and trying again, and then I'm fine. I'm in a quandry trying to figure out the exact mechanism of the problem - my experience with being a speech pathologist leads me to believe it is the soft palate as opposed to posterior tongue weakness, but I just don't know for sure. I am not, yet, experiencing slurred speech or hypernasal speech. The problem has only occurred a few times in the last two months, and is just scary as opposed to being problematic (it usually happens when I just try to swallow saliva). At this point, I can actually predict when it's about to happen, so I just relax, and it doesn't.
     I have experienced widespread pain, muscle fasciculations (and twitches), some mild to moderate burning sensations (sunburn across forehead, lateral portion of arm and leg), throat pain during swallowing, one bout of vertigo, one bout of blurred vision, etc, etc - basically alot of sensory weirdness. Last week, I got the buzzing/vibration symptoms, and the warm patches on my right side. I have also had that sensation like water (or urine) is dripping down my leg, but nothing there. Quite frankly, if it weren't for this soft palate thing, I would assume I have fibromyalgia (even though the pain does tend to be more concentrated on the entire right side of my body, down to eye, throat, jaw and head pain mainly on that side). All I have read about swallowing with MS and ALS (God please no) is people seem to have problems with mainly choking, or initiating swallowing secondary to weakness of the tongue. I just don't seem to fit these descriptions. Have had MRI of brain and it was clear. I go for spinal April 9th. All neuro exams clear - no hyperreflexes, etc. I would greatly appreciate any input regarding this soft palate thing. Thank you so much!! Shannon

[speechgeek]

Shannon

First I would like to recommend that you keep a timeline of your symptoms...Quix has posted on this. It's very helpful to the docs. All of my docs love it. We as patients tend to start with current symptoms (middle of the path) and we need to start at the beginning.

My timeline helped me keep docs on track that initial symptoms were vertigo etc. which is not a typical onset symptom of ALS. The evolution of what is going on with you is important. Keep a journal.

I can't imagine going to any other forum.  I ‘m not member of a Lyme forum...too weird. I just hang around with these awesome folks.

To answer your question re: Lyme treatment. Yes I have gotten tremendous relief however I am not back to normal. My hands and feet hurt and I fatigue easily. I have a lot of burning. The symptoms cycle. It's better than in Dec. I couldn't stand for more than 15 seconds or use my hands. I had to get my hair cut short because I couldn't hold my arms up to blow dry my hair. Fasciculation are gone, blurred vision is better. I still have ringing and buzzing my ears.

I'm on 3,000 mg a day of Amox which is up from 1500. It's only been a week or so and the increase really kicked my butt! I am really tired!!! I' m not considered Lyme positive by CDC or infectious disease standards but by Lyme standards I am. I have one band positive on the Igm (23) just not enough for most docs.   So I still feel undiagnosed.

The longer you have it the harder it can be....my mom has had it for 10 years. It's like any other disease no guarantees. You and I both have a lot of patients with the same dx but no two present the same or respond to therapy the same.

Keep posting because you never know when you might be helping someone else. Try to put your thoughts in smaller paragraphs so those with significant vision issues don't get overwhlemed visually. You will hear from more folks.

You will be in my thoughts and prayers.

Rebeccah

[dandb]

Heather, just wanted to say, your initial response was the same as Rebeccah's: kind, caring, and most certainly compassionate. Your warm welcome and concerned questions were more than appreciated and helpful!!!!!
     Rebeccah, I meant to ask (forgive me for being so forward, but like I said in my first post - long time reader so I feel like I know so much about folks here, when I am completely new to you all - please don't answer any questions you feel I am asking inappropriately)  if you were seeing any differences with the meds for Lyme - I had read other posts of people who were mistaken for ALS when they really had Lyme ( which is where I'm getting the info. for this question), but I saw that the treatment for Lyme can take quite awhile - have you found any relief yet? Shannon

[Heather3418]

Speechgeek (Rebeccah) is an excellent person to be talking to about your current symptoms.  She is fantastic with her advice and an extremelycaring and compassionate person (not that everyone on the Forum isn't compassionate, because they are) but Rebeccah can really relate to your experiences and your fears, because she's been there.

Rebeccah, thank you for picking up, where Iseemed to fail concerning Shannon's current complaints..  I just didn't know enough about this swallowing problem to be of much help to her.  Since I already have my diagnosis of MS, I try to be as compassionate as I can to others that are still going through the land of limbo.  (Having been there myself at one time.)

Like you have both said, MS is a heck of alot better than dealing with a diagnosis of ALS.  I pray for both you and Shannon... One thing that gives me hope for you both, ALS is more common among men than women.

God Bless you both.  I am here with a soft shoulder for either of you.
Heather

[dandb]

Thank you so much for responding!!! I have read your posts, and knew you too were swinging in the balance between the two diagnosis - interestingly enough, as soon as I read yours, my first thought was - ALS? Definently not - no way she has it - no matter how many posts I've read from people dx with ALS and knowing that it can present so differently in people (on many other boards), I have never heard of any of them starting off or ending, with your symptoms - Quix certainly had it right when she pointed out the numbness issues and vertigo, not to mention your first horrific episode with the balance (hanging onto walls, etc - how teffifying that must have been for you) not being ALS related. I have often wondered why your neuro., based on your symptoms, won't rule out ALS?
   I have never treated adults in my practice, just children/teens - so I'm going based on what I remember from college and info. I've looked up. I have been on Zoloft since December, so that has helped tremendously with my anxiety. Whatever is going on with me, I can say that the symptoms wax and wane. The swallowing weirdness actually disappeared for two weeks, and then came back. But like I said, I can feel the tension in neck/jaw/oral area that seems to precede it, so I just relax, and I'm o.k.
   You know, when I first started reading on the MS forum here, it was to see if anyone else was experiencing symptoms like mine - and I was surprised to see that some certainly have. The one that surprised me the most were the recent ones on the bladder pain - November I had terrible pain in the bladder/pelvic area like I had a severe UTI for two weeks - several tests and ultrasound - and nothing - no reason for what was going on. But, like so many other things I've experienced, it's gone away, and so far hasn't come back. Anyway, my point being, at first it was just to compare symptoms, but now, I am totally addicted to reading this forum because everyone is so awesome!!!! Please forgive my rant - Bless you all! Shannon

[speechgeek]

Shannon

I too am a fellow speech path. Dysphagia is my thing ....when it's not happening to me. As you know...... MANY disorders demonstrate with swallowing difficulties as a first sign/symptom. You and I also know just enough to scare ourselves to death and keep us up at night:) The good news your emg is normal

I have some similar symptoms( vertigo, dizziness, buzzing vibrating, burning all over my body, tingling on the tongue tip and nose, numbness throughout my face, migrating joint pain, hundres of fasciculation an hour ( I don't have this anymore). I have fine motor problems and balance issues. Jaw fatigue but never dysarthric. I have weakness and I had an abnormal EMG. I have axonal Peripheral neuropathy. The numbness on my face was around my left eye, cheek and down the side of my neck.

My neuro started with “I can't definitively rule out ALS " with me....it's been a long road. I am currently undergoing treatment for Lyme disease.

I had several episodes of not being able to trigger a swallow at the onset of my symptoms.  Mine were also just with swallowing saliva. Never with food or liquids. Anxiety can cause swallowing problems. I finally gave in and took some anti anxiety meds for about a month until I had more answers and that really helped me. I haven't had a problem since January with my swallowing. If it had continued I was going to ask for an MBS.

If you look at my past history post I have said on more than one occasion I would embrace MS over ALS any day. I understand your fears and anxiety. I don't know where you live but there are several major hospitals that have MS and ALS clinics. Please keep us posted.

Rebeccah

[dandb]

Bless you for welcoming me!!!! To answer your questions: my neuro. exams have all been totally normal - I have had several in the past months (two at the ER, one at the Mayo clinic Jacksonville, and two with my current neuro.) Basically, my neuro told me she doesn't know what's wrong - she can't find anything neurologically wrong with me. I haven't pinned her down about the swallowing yet, though.She knows it's happening, but just doesn't have answers yet. My next visit in May I will be pinning her down though. It should go something like this- "as an SLP, I know that there are precious few diseases that will cause difficulties of this kind, along with my other sensory issues - what are your gut feelings?" I had an EMG of the right arm and leg and have had two nerve conduction tests - all clear.
     I was referred from my GP to her for possible MS or ALS - so she knows what I'm there for. I like her so far, she seems thorough, but I do feel that whatever is happening, I'm at the beginning of it, so it's going to take some time. My greatest fear, of course, is having ALS. As bad as MS is and can be, I sure don't want to be handed a death sentence, as a diagnosis of ALS would be (and dying very horribly I might add). Can you actually imagine hoping to have MS? I realize this must sound insane, but given the choice of the two, and with this soft palate thing, it seems that's where I am. Thank you for listening!!! Shannon

[Heather3418]

I am so glad that you finally posted.  Welcome to the MS Forum.

I am not a doctor and certainly cannot give you the answers that you need, but there is one thing I CAN tell you about Fibro.  It is NOT a one sided disorder.  It affects both sides, where the muscle meets the bone.  It's called trigger points.

The fact that you are having ONE-SIDED problems suggests something other than Fibro.  It suggest something neurological.  That's my opinion.  Remember I am not a doctor.  Was your neurological exam totally normal?  What does the doctor suggest about your symptoms?  How does he explain the trouble with swallowing and the strange feelings in your body?

I hope that you will stay with us Shannon, while more people chime in with their thoughts.  I wanted to make sure that I welcomed you to the MS Forum.  You are now among friends, that will do everything they can to help you through this mystery.

Glad you're here...Hang in there..we're with you..

Heather