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strizzlow20

New member
Joined
Oct 23, 2008
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9
Reason
PALS
Country
US
State
FL
City
Sebastian
I have spent a lot of time on these forums reading everyone's situations. I wanted to post something to perhaps some on the users here and to ask for an opinion. In September for 2008 I had a horrible sinus infection (possibly) the pain was so unbearbale that it hurt to talk and I couldn't even focuse. I didn't have insurance at the time so I went to a local dentist and asked for him to pull my upper right wisdom tooth. He said the tooth looked good but he would pull it. Great. No more pain. in October 2007 I woke up one night and I felt like someone was sitting on my chest and some one was choking me. The pain was not in my chest, it was in my throat. I called my mother who has been a nurse for 25 years and she said it was probably anxiety and to relax. This continued to happen and started to happen during the day as well. in December 2007 I go t my second sinus infection on the left side of face and tongue and neck. This pain was so horrible I went to the ER in tears I had never experienced pain like that in my life. They gave a steroids and pain meds to sleep. From December 2007 until May of 2008 I continued to have these choking spells and neck pain on the left side of neck. I started to notice some speech changes as well. It felt as if my tongue wasn't as numble as before and I notice the left side of face to tingle a little bit when I touched it. The ER said this was normal for a sinus infection. However it turned to fullnuss like dead weight on my face. It even spread to the right side of my face. I called the dentist and asked him what he thought and he asked if I had a CT scan done. I went and had a CT scan with and w/o contract. Nothing. Bloodwork to check thyroid was great as well. We did notice that my red blood count was below normal. Annyways the speech hasn't gotten better and the choking sensations continued. I finally recieved my health insurance in June 2008 and went a saw a ENT, NEUROLOGIST, AND GI. The first ENT said my nasal passages looked okay but they were extremely irritated. He gave penicillian, chlendomyacin, adn Avolox. None of these worked or helped. When i told him I thought that my speech was getting a little slurred and that I was having to artciulated my speech in order to sound right, he sent me to a neurologist. The neurologist said my speech sounded fine and that I needed to see a pyschologist. I saw one of those. They said they did not belive slurred speech wasnormal and that needed to look into that. I went to a GI doctor for the esophgeal spasms and he immediately performed a biospy of my esophgus and my stomach and did a dialtions. I noticed a little bit of soarness when I swallowed which he said would be gone in about a day. Other then that it was great. 2 weeks after that Sept 2008 I noticed extreme tongue pain. It felt like a cramp under my tongue and like someone was pulling my tongue out of my mouth. I continued to look in hte mirror but I could not notice much changes. I did notice that in comparison to my finaces tongue hers was flat in hte back and mine slightly raised. I aslo notice that when I protured my tongue and turn it to the right I have a dent/dimple in the middle of my tongue. Atrophy? I saw another Neruo on oCTOBER 2008 and expressed my concerns. He did the blood work and simple reflex tests that were normal. I explained to him the tongue issue and he didnt seemed to worried or he just wasn't going to jump to conclusion yet. I havehad 2 MRI w and without contrast. I have an MRA schedule next week. and I have a follow up in December 2008 for an NCV/EMG I think of the left leg but I am not having any problems with that leg. It is with my tongue.I have no muscle twitching that I am aware of and I look in the mirror to see if it quivers or not. It does not quiver while it is at rest nor does it quiver when I stick it out. I did notice some slight weakness and cramps in my left foot and ankle but that went away. To be honest with you I am so scared that I am crying every other hour because I don't know what to do. I am trying to be positive about all of these I am jsut am positive I notice something with my speech and no one else does. Can someone please respond to this and give me there opinion. I am very scared and I just dont know what to do. I had plans on getting married and having a child and I have agood career but I don;t know if I can do that anymore. Can some one respond and maybe ask a few more questions about my symptoms. Thanks. EDDIE. God Bless ALL!
 
Eddie ... I'm so sorry you are experiencing these symptoms and are so worried. I have no medical training and can only tell you from my own experience and reading about others with ALS, that this DOES NOT sound like ALS.

Sometimes when we contemplate great changes in our lives ... like getting married and having a child ... this can create unconscious anxiety that manifests itself in the body. You say: I am so scared that I am crying every other hour because I don't know what to do. That sounds to me like you are experiencing anxiety over the big decisions you are thinking about making, because you DO know what to do about your health, and have been doing it ... seeing a doctor, having tests done, etc.

Please have the scheduled tests done and tell your doctor your state of mind. If you can reduce your anxiety level, your doctor will be better able to determine if there are physical issues that need to be dealt with.

But you don't have ALS.
Good luck!
 
Eddie,

Like Beth, I'm no medical professional but what you have sounds nothing like ALS. You have high anxiety and are a good candidate for "Pinched Nerve Syndrome". Its harmless and tends to go away with a focus shift.

As Beth mentioned, keep your follow-up appointments but in the meantime, please get your mind off of your "symptoms". Try thinking, "Its only a pinched nerve" and maybe things will improve. Today is a very nice day in Springfield; perhaps its a nice day where you are. Go to the park, get some air and pet a doggy. It will work wonders!

Zaphoon

P.S. I prefer Cocker Spaniels - they just soak up the "love".
 
We'll hope and see

I appreciate you both very much. I am in tears right now as I when back. When we are young we often face challenges in life and are in the position to make critical decisions. I appreciate you both very much for responding. I felt selfish writing this forum today but I am every scared with my symptoms. I have had the MRI and the Ct scans and I awaiting a MRA, EP testing, EMG, and NCS. Thank you so much again for your response because the tongue pain and neck pain I was getting me unbearable. I really hope your right, but with my condition aside, GOD BLESS everyone of you that take the time to comfort the individuals on here.

Have mercy upon me, O Lord, for I am weak: O Lord, heal me, for my bones are vexed. Psalm 6:2

O Lord my God, I cried unto thee, and thou hast healed me. Psalm 30:2

Why art thou cast down, O my soul? And why art thou disquieted within me? Hope thou in God: for I shall yet praise him, who is the health of my countenance, and my God. Psalm 42:11

God be merciful unto us, and bless us; and cause his face to shine upon us; Selah. That thy way may be known upon earth, thy saving health among all nations. Psalm 67:1-2

Bless the Lord, O my soul, and all that is within me, bless his holy name. Bless the Lord, O my soul, and forget not all his benefits: Who forgives all thine iniquities, who heals all thy diseases. Psalm 103:1-3

Hear my prayer, O Lord, and let my cry come unto thee. Hide not thy face from me in the day when I am in trouble; incline thine ear unto me: in the day when I call answer me speedily. Psalm 102:1-2

Oh let the wickedness of the wicked come to an end; but establish the just: for the righteous God trieth the hearts and reins. Psalm 7:9

I have set the Lord always before me: Because he is at my right hand, I shall not be moved. Therefore my heart is glad, and my glory rejoices: my flesh also shall rest in hope. Psalm 16:8-9

The troubles of my heart are enlarged: O bring thou me out of my distresses. Look upon mine affliction and my pain; and forgive all my sins. Psalm 25:17-18

Examine me, O Lord, and prove me; try my reins and my heart. Psalm 26:2

The Lord is nigh unto them that are of a broken heart; and saves such as be of a contrite spirit. Many are the afflictions of the righteous: but the Lord delivers him out of them all. Psalm 34:18-19

Create in me a clean heart, O God; and renew a right spirit within me. Cast me not away from thy presence; and take not thy holy spirit from me. Restore unto me the joy of thy salvation, and uphold me with thy free spirit.
Psalm 51:10-12

The sacrifices of God are a broken spirit: a broken and a contrite heart, O God, thou wilt not despise. Psalm 51:17

Hear my cry, O God; attend unto my prayer. From the end of the earth will I cry unto thee, when my heart is overwhelmed: lead me to the rock that is higher than I. For thou hast been a shelter for me, and a strong tower from the enemy. I will abide in thy tabernacle for ever: I will trust in the covert of thy wings. Selah. Psalm 61:1-4

My flesh and my heart faileth: but God is the strength of my heart, and my portion for ever. Psalm 73:26

My soul longs, yea, even faints for the courts of the Lord: my heart and my flesh cries out for the living God.
Psalm 84:2

The proud have forged a lie against me, but I will keep thy precepts with my whole heart. Their heart is as fat as grease, but I delight in thy law. Psalm 119:69-70

Let my heart be sound in thy statutes. Psalm 119:80
 
I am so sorry to read your pain I dont think this is ALS.It sounds like you are having a hard time dealing with something in your life
Maybe you need to talk to a Therapist who can ease your concerns

Pat
Dx ALS 1999
 
Eddie,

I understand your fear, anxiety and dread, as having some myself and have had bouts of ALS dread off and on over many years. From my reading, knowledge of persons with ALS, etc. your symptoms do NOT sound like ALS. If anything, sounds more like sequelae from the sinus infection or the pulled teeth. The sort of pain you describe is not something that goes along with ALS from what I know, and would argue against that diagnosis.

If you let your anxieties derail your life plans (marriage, children, career) than you may well make the mistake I did long ago and several times. Ask yourself this: What if it isn't ALS or anything very serious or fatal? If you act on the assumption that it is, you can put your life on hold, even ruin it. Trust me on this, I know. One can be psychologically paralyzed almost as much as one can be from ALS. I would follow up with the doctor appointments. Also, if you want a good, extensive work-up for possible speech difficulties, in my experience the best work-ups for this are done by speech therapist, not doctors or even neurologists. So you might do what I'm going to do - get a referral for a speech threrapy evaluation (used to be called speech pathologists).

Hang in there. I do agree with the others that some of this may be about not wanting to face impending big life issues or decisions. A good therapist may not be a bad idea.

Searcher
 
Searcher,

I don't have the time, nor desire, to read back several posts to notice what you do for a living? If you do have a job, don't you need to sleep sometime?

If you don't mind my input, keep your posts shorter, it might lessen your anxiety, as well as the readers. And for goodness sake, quit worrying so much about everything! Life is too short, with or without ALS, for all the worrying, arguing, and everything else you're involved in.

Life is not practice, this is all we get, move forward.
Keep the faith,
brenda
 
Wrong person?

Brenda,

You addressed this to me, but don't you mean to address it to Eddie? My response to him wasn't long and I was offering him reassurance, not expressing worries about ALS in that post.

Searcher
 
Life is not practice, this is all we get, move forward.
Thanks, Brenda. I needed that reminder today. You will probably hear me quote you from time to time. I always say I am not god at thinking up things by myself but I am a genius at recognizing the good ideas of others!
 
Thanks from me, too, Brenday. I'll second CindyM's comments.

Kim
 
ya'll are great,

I just have one question, who the h--- is Eddie?

Perhaps I should add memory problems to the title of this thread? Guess before he left us, searcher didn't realize I was being a bit of a smarta--.

Happy Monday Night to all!
brenda
 
Eddie is Strizzlow20, who started this thread, and who was in great distress. I hope he or she got some comfort somewhere along the line.
 
Thanks Beth,
I forgot to go all the way to the start of the thread, I see that now.

oops, sorry, Eddie, I hope all is well with you,

keep the faith,
brenda
 
Update

I just wanted to give everyone an update on my situation. 4 PCP, 2ENT, and 3 Neurologists later, I finally had a neruologist take my symptoms in to account and to do some testing. I haved tested twice positive for Myasthenia Gravis. These symptoms were not in my head. I was told numerous times to see someone for my "anxiety" symptoms. God has blessed me with an answer. I just wanted to thank everyone who responded to my post. God gave me the strength to be persistent. God Bless you all on here and stay positive. I am only 22 years old and I now know what I want to do with my life. I will go to medical school and I want to help those that have ALS,PLS,PBP, and Alzheimers. My eyes are opened to all of these conditions because of my situation and I will NEVER forget what I have observed many individuals go through with these conditions. I will dedicate my life to finding an answer/cure for these conditions and deticate my life to God as well. Thank you all.
 
Eddie,

Good luck with the treatment for MG, I'm happy you finally got answers.
 
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