Old 08-12-2009, 08:05 PM #1 (permalink)
keegansmommy4
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Hello everyone,

I have not been diagnosed with als but am very scared that i have it. I have a long story but I will try to shorten it as much as possible. i got the swine flu back in april and have been having weird neurological symptoms ever since. It first started out with my arm feeling weak and progressed to my leg within a week. I went to the dr and they stated that I was not weak in any way. I then started feeling twitches all over my body and that really freaked me out so I googled the sxs and of course als came up which scared the u know what out of me because my uncle just passed away from it last SEpt. i immediately went to my dr who told me I was fine but referred me to a neuro to ease my mind. He ended up being kind of a jerk and said taht I am way to young(26) and that there is no way I have als after a clinical exam. I asked for an emg and eventually he agreed and that came back normal. The sxs kept on and would not get better so I ended up seeing a neuro at the naval base (husbands a marine) and based on his and an internists exam they both said 100% no als. I was still scared so I went to the er and ended seeing the neuro oncall who decided to admit me for observation. She did a full body mri and blood work and didn't find much except I do have Chiari malformation which has to do with the brain. Anyway besides some other minor things they didn't think that they were causing my symptoms so she did an emg. She tested the arm that was bothering me and said that she saw a couple positive sharp waves and then redid and changed her mind so she stated normal and no als. At this point everyone is starting to chalk it up to anxiety which I admit at this point was high but because of the physical symptoms that I was having. I called my pcp and she decided that she wanted to send me to a friend of hers that was a neuro who she thought would be great. She was right he was wonderful listened to me and fully looked me over and said taht I was fine possibly fibro. I asked him to do an emg and he has done 3 since last month all being normal and I also had one by the naval hospital that came back normal. granted all these were in my limbs because that is where I was having my problems. Well I have been feeling really weird in my throat are for the last month and a half and chalked it up to anxiety but then I started noticing that my tongue was changing as though it was losing bulk and thinning out. I also noticed that I have been slurring my words but no one else seems to hear it except for one friend and i was crying when I talked to her. Anyway I had the wonderful neuro do a tongue emg and i could'nt get it to relax- it finally did as much as I could and he said that it looked good. Forgot to mention that in the last four months I have lost about 45 pounds but have not been eating very much at all. Fast forward to now- I am still having the twitching my voice to me sounds slurred I have trouble taking deep breaths and my face and neck feel extremely tight and its harder to make facial expressions not to mention it looks as though my tongue is getting smaller and thinner by the day. I am completely fatigued and feel horrible. Sorry so long but my questions are: if I had the symptoms start in my legs and all my emgs came back fine shouldn't it have shown something and if it was bulbar onset then wouldn't those symptoms have started first not the limb symptoms? can anyone explain tongue atrophy? Could my face feel tight from straining it so much by looking constantly at my tongue all the time and could there be any other explainations for these ssymptoms. I am at my witts end my life has changed so much in the last 3 months physically and mentally and I don't know what to do I just want some answers. I kind of feel like the dr's arent taking me seriously becuase I am so young and the tests have come back fine. I have a four year old and a wonderful husband and all I can think about it leaving them. Please any input would be sooo appreciated. I thank you from the bottom of my heart and my heart goes out to all of you as even if I don't have it my uncle who was a father to me did and it killed me to watch him go through it. Thank you so much.
Emma
 
Old 08-12-2009, 08:40 PM #2 (permalink)
joelc
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Take comfort in the fact all the doctors have said you do not have ALS. Twitching means absolutely nothing and it certainly does not point to ALS.
 
Old 08-12-2009, 09:17 PM #3 (permalink)
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Emma, if you have lost 45 pounds in 4 months, you must not be eating very much at all. Food deprivation causes a variety of neurological and psychiatric symptoms. Can you afford to lose that much weight? I hope that you get to the bottom of your symptoms, they definitely don't point to ALS and all those clean EMG's should put your mind at ease but you definitely need to eat properly to get your good nutrition and get adequate rest.

Take good care of yourself and I am sure you will start to feel better.
 
Old 08-12-2009, 09:45 PM #4 (permalink)
Zaphoon
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In order to be diagnosed with ALS, you need to be having upper and lower motor neuron death. Your EMG has cleared you of lower motor neuron trouble and this is very, very good. It means that the symptoms you are currently experiencing are not attributable to ALS and likely to remain that way.

Give the doctors some time to figure it out for you and realize this may take a while. In the meantime, do whatever you can to reduce your stress and anxiety.

Zaphoon
 
Old 08-13-2009, 09:40 AM #5 (permalink)
asantiago
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Emma,
Anxiety can make your body do crazy things. I at one point had myself a mess because I was convinced I had ALS (it runs in our family). The more I obsessed over it, the more I felt the symptoms. Once I made up my mind otherwise it was amazing how many symptoms just disappeared. You have good reports from doctors so you need to trust in them for now and find a way to change your mindset.

We control so much of our bodies, but the mind, well has a mind of it's own and sometimes will lead us in the wrong direction. Take the good news from the doctors at face value and focus on being a healthy person. You may benefit most from some anti-anxiety medication, a good exercise routine and a healthy diet.
 
Old 08-13-2009, 10:06 AM #6 (permalink)
MtPockets
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Emma,
It sounds like you do not have ALS.
Will you feel better if you have a name to put on whatever you have?
If they were to tell you you had ALS it would not change anything, since there is no treatment.

Peace be still. Focus on living and enjoying things around you, instead of focusing on a may be disease that everyone has told you that you do not have.

I have ALS and each day I thank God for the day and begin with asking Him what should I do with this day He has given me. Focus, on the positive things you have around you, family, friends, making good memories for everyone you know. As you look at the glass half full instead of half empty, many of the symptoms may ease off or even go away.

I am not chastising you, but trying to give you a direction to focus your thoughts. We can chose what we allow our minds to dwell upon. I wish you peace, and hope for the future.

 
Old 08-13-2009, 12:45 PM #7 (permalink)
polisaryo
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if you have clear emg's don't worry.

i have seen patients who had chiari malformation and they had some symptoms that mimics als. of course it dependt on the level of the malformation but some of your symptoms can be due to chiari malformation.

and your doctors are right als is extremely rare at your age. But symptoms of chiari usually occurs between 25-35.

effects of anxiety is incredible. do not underestimate the role of anxiety on your symptoms.

best wishes
 
Old 08-13-2009, 01:43 PM #8 (permalink)
keegansmommy4
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Thank you so much everyone for your input. I am so very greatful. I just don't understand wht would be causing my tongue symptoms? I can def tell tht it has changed and my articulation of some words tht have s in them is when I can tell. I also literally feel shorter these past few days. Could that be my muscles shrinking. I have no energy and it kills me. Have any of you had trouble getting your tongue to relax on an emg because I guess thts wh I'm so worried bcuz they couldn't tell indefinitely but said it looked normal.
Thanks and GOD BLESS
 
Old 08-13-2009, 03:04 PM #9 (permalink)
BethU
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Emma ... it sounds like you and your life are in turmoil. Extreme dieting, obsessing about your body, crying to your friends. You say your life has changed drastically in the last few months physically and mentally. Your tests show no ALS, and your "symptoms" don't relate at all, so there is clearly something else going on.

You're not making much sense, and I think if you were calmer you'd realize it too. You "feel shorter"? It's our skeletons that determine height, not muscles. You have no energy? Dieting will do that. Etc., etc.

Please get some counseling to help you through this period. Find someone to talk to ... a family counselor, a pastor, an older friend or relative.

Take care.

PS ... I don't think ANYBODY could "relax" their tongue when someone is sticking needles in it !
 
Old 08-13-2009, 03:40 PM #10 (permalink)
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You should be aware everyone has trouble relaxing the tongue it has nothing to do with ALS. I would be darn sure I did not have als if I were you. Relax
 
Old 08-13-2009, 05:24 PM #11 (permalink)
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Probably every bulbar patient is different, but - my husband presently has no problems pronouncing S. That would be lisping which is different than sounding drunk! His voice is more like a muffled drunk. My name starts with an S sound and he can really bolt it out when he needs me.

How many emgs now? 3 or 4 and they are all clean. I think I would look down a different path such as rheumatology and do seek counseling as suggested to help you cope.

Anxiety can affect your speech and I know from my own experience in my past career in very competitive sales to OEMs. It can be embarrassing when you stumble over your words, but anti-depressants work well to help anxiety.
 
Old 08-13-2009, 08:22 PM #12 (permalink)
keegansmommy4
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My tongue is def thinner and smaller and I am having issues with swallowing. I understand tht it may not sound like it makes no sense but these are real symptoms and do u really think tht I would want to be writing asking for advice from you wonderful people if I wasn't really feeling this way. I have a amazing 4 year old and would give anything to not be wrrying about not being here for him. I was perfectly healthy up until 3 months ago and would give anything to have tht back. Please please don't think that I would make something up or exaggerate anything to u guys as I knw first hand what its like- I went thru it with my uncle. Is there cases where you can have both onsets or a very rapid progression because my body is changing daily. I came here just asking fro some opinions and support but def not to be called an anxiety case because I have already got help with tht and am taking meds and still feel the same. I'm sorry if you think I don't make sense but I would never make anything up. I could understand if it was just my limbs and everything was normal but u can't deny when something is not right in your mouth and throat. What else would cause your tongue to atrophy? I would give anyrthing for my only worry to be back to what I'm gonna make for dinner. I hope tht you all will cont to help me becuz I feel so alone in all of this. My husband is wonderful but he doesn't knw how to help me either anymore. Thank you
Emma
 
Old 08-13-2009, 09:32 PM #13 (permalink)
hopingforcure
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Emma,
I would surely think any doc worth a darn could see atrophy of the tongue. I do not think we are suggesting you are making anything up, it is just that we have seen and heard from literally hundreds of people who have worried like you are, and at least hundreds are long gone from the forum and on with life, and fine. I would definitely start looking down a different path. I understand you have lost a relative to ALS, but that does not mean that is what you have, I really believe you have something much less debilitating going on.
 
Old 08-14-2009, 06:25 AM #14 (permalink)
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Emma dear,
We are not thinking you are making this all up. We are just giving our advice based on years of talking with others just like yourself who are afraid they have ALS. The symptoms you describe are just different than what we normally see. That is why everyone is saying they think it is not ALS, but only a Doctor can really tell you that, after ruling out everything else.
If you want more confirmation then there are more tests that can rule out other things. I would recommend, since you believe it may be ALS, that you go to an ALS clinic where the Doctors specialize in treating ALS patients all day long and tell them your fears, and that you want all the test run to rule out anything else. There are Nerve Conduction Studies, Spinal Taps, many other tests that may narrow done whatever you have going on in your body.
There is bound to be a major clinic near San Diego where you can get help.
We hope for your sake that it is not ALS. We are standing with you in this fight, not against you. Have peace my dear Emma.

Last edited by MtPockets : 08-14-2009 at 06:27 AM Reason: add idea
 
Old 08-14-2009, 12:40 PM #15 (permalink)
keegansmommy4
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thank you so much mtpockets! I don't even knw where to begin with getting into an als clinic. Do I have to be referred and approved by my insurance? I was wondering if anyone could tell me with bulbar onset if they noticed weakness or tongue atrophy first? Does the skin on the face thin out because it is scary to look at me just two months ago in pics and what my face looks like now. Thanks so much.
Emma
 
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