Old 05-01-2010, 04:40 PM #1 (permalink)
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Default Still worried about Bulbar Onset?

I have had slightly slurred speech for about 2 months. Trouble with S's primarily and then just occasionally trouble putting words together. Most of the time I sound fine and my husband and friends haven't noticed. My tongue also feels like it no longer fits right in my mouth. It feels a little too long and fat. The tip now feels numb/slightly irritated. Also I have severe dryness in my throat. Feels like a cotton ball is back there. I haven't had any trouble swallowing yet per se, but dry food is uncomfortable going down. I do have a twitch every now and then in my jaw when I'm laying down. My tongue hasn't twitched yet but i have noticed my jaw just jumping occasionally. I also notice a tiny little electric shock sensation in my cheeks occasionally. I recently was diagnosed with West Nile IGG antibodies (meaning old not active) in my spinal fluid after having some numbness in my face and diZziness for 2 yrs. My Neuro says my office exam is perfect and he even did an EMG on the left side of my body and under my chin into my tongue. All was perfect except a spot in my left calf that has been abnormal since 2003 after West Nile hospitalization. At the time no one diagnosed me and it has just recently been found. Any opinions would be greatly appreciated. I am a 34 yr old Mom of 3 and super worried. I am hoping it's anxiety or the sleep depriv of having a newborn is bringing out West Nile probs. Thank you for taking the time to read through my post.
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Old 05-01-2010, 04:53 PM #2 (permalink)
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Default Re: Still worried about Bulbar Onset?

Having a newborn pretty much equals being sleep deprived! Please rest assured that none of what you describe sounds like what I've experienced. For example, the speech problems you notice. In reality, if you had bulbar weakness it would be the exact opposite, You'd think you were talking just fine, and meanwhile everyone around you would be asking you to repeat yourself. (no kidding). Try to think of the occasional twitch you feel as being the same as one of those annoying eye twitches, they come on virtually everyone if the person has too much caffeine, too much stress, too little sleep, or any combination of the above.... try drinking more water. Especially if you're nursing the baby, but regardless, water helps.

Try to sleep when the baby sleeps, IMHO, if neither you or your husband are dangerously deep sleepers it probably would be a great idea to put the baby in bed with you at night. If the baby has colic, swaddling really does help.


It would make sense that the extra stress on you right now could bring out the dormant west nile virus. I had shingles when I was 19, for probably the next 25 years, there were periods of time (under duress) where my skin would have a phantom sore streak, felt so much like shingles, just nothing visible.



Good luck to you, don't let your fears sidetrack you to where you miss out on living in the here and now. These are the times you'll always remember!
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Old 05-01-2010, 07:25 PM #3 (permalink)
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Default Re: Still worried about Bulbar Onset?

Rose,

Thank you so much for responding. It really
does help to calm my fears. Caroline is my 3rd baby so she really has no choice but to be the sweetest best little baby She has been a joy. Just wish her Mommy felt better. I'm still trying to wrap my head around the West Nile
diagnosis. I have such fear that it's triggering ALS. Hopefully it's just flaring a bit and will go away when I am able to sleep and take care of myself better. Trust me, I do realize how fast they grow up and I am cherishing every bit. Thank you again.

Lara
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Old 05-05-2010, 03:40 PM #4 (permalink)
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Default Re: Still worried about Bulbar Onset?

I have some new symptoms... For the past few days, I am able to swallow OK, but then it feels like all my food settles in the top of my chest. Then it comes back up into the base of my throat. The whole night I couldn't sleep b/c I keep swallowing sometimes on purpose sometimes involuntarily. I also noticed my jaw does a fast clamp down periodically. Almost like a strong single twitch.

Any reassurance out there would be greatly appreciated. I had an EMG done about 3 weeks before and they did 1 prick up under my chin into my tongue and it was normal.

All of this began about 2 months ago with a very dry throat. VERY dry. Then two days ago the swallowing issues started. I can swallow fine but it feels like everything sticks in my chest.

Lara
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Old 05-05-2010, 03:41 PM #5 (permalink)
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Default Re: Still worried about Bulbar Onset? (NEW SYMPTOMS)

New title...
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Old 05-05-2010, 04:27 PM #6 (permalink)
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Default Re: Still worried about Bulbar Onset?

Have you seen an ear/nose/throat (ENT) specialist or a gastroenterologist yet? Swallowing problems and reflux problems can be caused by a lot of things other than neurological conditions. ALS should be way down your list of concerns until any throat and esophageal problems have been evaluated and resolved.

Good luck to you.
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Old 05-05-2010, 06:02 PM #7 (permalink)
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Default Re: Still worried about Bulbar Onset?

I have a barium swallow test tomorrow AM. I went to my PCP today, but considering my West Nile Virus and strange neuro symptoms, she wants me to consult with my Neurologist. I'm afraid the West Nile Virus is acting up b/c I am so sleep deprived, run down, anxious, etc etc after having my 3rd child & now it has triggered ALS. There are studies going on right now about flaviviruses triggering ALS and West Nile is one of their main leads I believe. I was acute back in 2003 and fine until the birth of my 2nd child in May 2008. I have been dizzy with blurred vision since then. And, now after the birth of my 3rd child I am experiencing numbness around my face, cold sensations on my chin, dry throat and now involuntary swallowing & all my food getting stuck in my chest then ooozing back up. Such fun. Whatever is wrong with me is having a field day with me since Caroline's birth in Jan.

Any thoughts would be appreciated. Has anyone here seen West Nile progress into ALS?

Lara
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Old 05-05-2010, 07:47 PM #8 (permalink)
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Default Re: Still worried about Bulbar Onset?

I've heart of no one who has had West Nile lead to ALS. However, I have read that severe cases of West Nile can cause West Nile poliomyelitis. (which would affect the muscles, but does not make it a motor neuronopathy).

I'm glad you're scheduled for the barium swallow tomorrow. From your description in your post, it could be that either the sphincter muscle at top of esophagus is not opening each and every time you swallow and/or you have reflux. If either of these are the case, they are both treatable, but of course, you will still need to find out why its happening.

Please post and let us know what you learn tomorrow. Hopefully you will have some of the results after your test, rather than having to wait to talk with your GP.
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Old 05-05-2010, 09:32 PM #9 (permalink)
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Default Re: Still worried about Bulbar Onset?

Thank you Rose... I will definitely report back! My case of WNV is so strange b/c I was almost perfect from 2003 to 2008 (just twitches occasionally worse with stress). Then boom... all this new stuff after 2nd and 3rd baby.

I pray I have some answers soon and whatever is wrong... lets go of me. Also, I am going to try to get my anxiety under control with some medication b/c I know anxiety/stress never makes anything better.

L
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Old 05-06-2010, 09:33 PM #10 (permalink)
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Default Re: Still worried about Bulbar Onset?

Rose, My Upper GI was clear... no signs of reflux, esophageal problems, ulcers, etc etc. I'm certain my throat isn't right b/c I feel a severe dry sensation in the back and the feeling almost like a cotton ball is stuck back there. Also, I have a sensation that saliva is always trying to come up my throat. And, in my mouth I the feeling of thick fluffy saliva (anyone?). How bizarre is this! I really feel strongly this is tied to WNV. Many people experience strange Neuro symptoms after West Nile and why mine are popping up brand new 7 years later... I have no clue.

I also notice my voice is a bit hoarse occasionally and I have to clear my throat a ton. Also, I feel like I laugh a bit differently at times and sometimes when I am relaxed a noise will come up that I didn't intend to make.

All of this coupled with the jaw twitch/jerk (single at a time)... has me really worried. I am hopeful once I am able to get more rest and hopefully a break once the Zoloft kicks in, it will all subside. I know it does ZERO good for anyone to waste our time worrying or with anxious thoughts of impending doom. I'm working real hard on trying to focus on the things I can control and that is my beautiful fam.

Thanks again for sharing your opinions with me.

Lara
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Old 05-07-2010, 08:57 AM #11 (permalink)
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Default Re: Still worried about Bulbar Onset?

Lara,

Well, I know it probably didn't ease your mind when nothing showed up. This kind of thing is so frustrating, when a person knows something is going on, but the doctor says everything is fine.

I think the way I would look at it, is, if nothing obvious is there, then whatever it is will just have to present itself more fully, or go away.

I know its hard with small children to even make time for doctor appointments, but, if you go ahead and get yourself scheduled to see either a gastro doc, or an ENT, and in the meanwhile, keep taking the Zoloft, best case is that it is something the meds can handle, and all your problems will be gone by time you have your appointment.

I don't know much about the West Nile Virus. I do know that some types of viruses we are sick from, just never leave the body, or at least, not for a long while.

Don't discount the mind-body connection though. It is very powerful and creates very real problems. When we still did not know why I was losing my voice, I was scheduled for an EMG of my vocal cords. While I was sitting in the waiting area, before my test, the neuro came out of the exam room with the patient who had gone in before me. I could overhear their conversation, and I was so shocked. This woman (the patient) had absolutely NO voice, and the neuro was explaining that they'd looked at every possible physical cause, up to and including the EMG they'd just finished, and there was nothing wrong, and she needed to go back to her psychiatrist. She nodded (sadly) but accepted it very readily, so it made me think they'd already discussed this before.

I'm not by any means suggesting that you need to see a shrink, just trying to emphasize that stress, whether it be physical, mental, or emotional, can cause our bodies to react badly. Its a real thing. No one questions that stress can cause heart attacks or stroke. For whatever reason, these types of medical emergencies seem to be "socially acceptable" physical responses to overload. But, other manifestations of a person just having too much on them? It sometimes seems like the person experiencing the problem interprets being told there is no physical cause, with it being an imaginary cause, and this just can't be further from the truth.

Anyway, try to take some relief in that there was nothing obvious causing you your problems, give the meds a little more time. And rock that sweet baby for me!

Good luck, let me know how things go for you.
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Old 05-08-2010, 05:03 PM #12 (permalink)
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Default Re: Still worried about Bulbar Onset?

Rose,

I had another EMG yesterday by a Neuromuscular specialist in Dallas. He did under my chin and my cheek as well as my right leg and left arm. The other Neuro just tested my left leg and left arm as well as my chin. This 2nd opinion Neuro said my EMG was "pristine". He said
he was positive I don't have ALS and suggested anti anxiety meds to help me cope with my symptoms since Carolines birth. He believes the damage WNV caused might be the culprit buy he believes my symptoms are benign because my MRIs have been stable since 2003 and everything else is normal... CSF, labs, etc etc. My tongue still feels too long for my mouth, my cheek twitch is still happening, occasional jaw clamp at night, constant swallowing at night, dry throat, etc etc. Before I had my daughter all I had was a slight tipsy dizzy sensation and my vision was a bit off. No clue what has triggered my nťw symptoms but I pray everyday they will go away!

Should I be completely sure ALS isn't a possibility after two clean chin EMGs? I still can't help but think about it even though he tried to completely reassure me.

Thank you for everything and I will be praying for you. You have been wonderful to help me through this time. I appreciate all of your time. And wish you the very best.

Lara
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Old 05-08-2010, 05:18 PM #13 (permalink)
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Default Re: Still worried about Bulbar Onset?

Congratulations! A pristine EMG, and doc says you do not have ALS. I am so happy for you! HUGS Lori
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Old 05-08-2010, 05:56 PM #14 (permalink)
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Default Re: Still worried about Bulbar Onset?

Lararobin-

I think you are in the clear. very good news. I would go for the anti-anxiety meds.

take care-

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Old 05-09-2010, 09:33 AM #15 (permalink)
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Smile Re: Still worried about Bulbar Onset?

Lara,

Its wonderful that you were able to get into see another neurologist with a specialty in neuromuscular.

The cranial nerves (from what you describe) that he tested included XII (tongue) That was the one under the chin; and either the facial nerve (VII) or Trigeminal (V), when he put it in your cheek. You received an extremely thorough exam for the bulbar muscles.

Don't forget that neurologists also have a degree in psychiatry, so he was as qualified as you could possibly ask for, in the advise that he gave you.

As an added reassurance, remember that the motor neuron diseases are just that, motor ~ not sensory. If you had bulbar weakness, it would not make your tongue feel any different than it did before. (in reference to how you said it feels too long,etc).

I don't know how long it takes Zoloft to get into the system, and offer you some relief. My dog was recently put on Prozac, and the vet said at least 3 weeks, but it would be 2 MONTHS before we could say it didn't help. (It did, BTW, soooo nice! he had major separation anxiety problems) But, I digress, if Zoloft isn't the right one, I'm sure there are other formulations which can be tried.

My short answer is YES! Absolutely trust that what's going on isn't ALS. If you don't get better, don't just resign yourself to living with it though. Go back to your GP for follow up and see what the next suggestion is for you,

Good luck to you, please pop back in and let me know how you get along.

Last edited by rose : 05-09-2010 at 09:41 AM Reason: Happy Mothers Day :)
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