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Teodoro

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Jun 25, 2012
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Learn about ALS
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Virginia
First, thank you for reading this post and your help. My heart goes out to all that have been diagnosed with this horrible disease. I have read some posts trying to become knowledgable about ALS and I am amazed at the level of strength, courage, and support in this community.

I have a very strange presentation of symptoms that have manifested now into what i believe may be Bulbar ALS. I was a healthy and fit 41 yr old male until Feb this year when I felt general malaise and flu like. Went to the doctor and With exception to elevation of BP, normal metabolic panel. Then, suddenly my left arm and chest started tingling. At first I thought it was temporary and other than the anxiety it created, thought it would disappear. Well, it did eventually after 30 days but by the time I was back to my PCP and he set up nerve conduction study it was gone so I cancelled the appt (how I wish I would have never done that now!) then the horror really started. I started having severe reactions upon eating. I would bloat, have difficulty breathing, gagging, and nausea. I would have brief heart arrythmia followed by severe chills and flushing that lasted a couple of hours. I went to the ER three times. All labs at the ER checked out. Pssed stats/echo, wore cardiac monitor for 30 days and was cleared of heart. One DR mentioned carcinoid, which I tested with a high random urine tests and was sent to an endocrinologist. Carcinoid and Pheochromocytoma were ruled out along with: Lyme ERISA, hepatitis, thyroid, etc. I lost 14 lbs off of my 150lb frame, so initially he treated me with a drug called Octreotide (when he suspected Carcinoid). This helped me gain my appetite and the flushing resolved over time. During this entire time I have been horribly fatigued.

But this is where it gets even more frightening. On my last ER trip in mid April I noticed fasiculations in my calf. Since they were after the stress test I chalked them up to dehydration. However, the fasiculations have grown worse and are now much stronger and frequent - mainly in calves but are randomly everywhere else as well. I then noticed my feet and hands change temperatures ( often times going cold) and my veins started bulging out. I had developed impaired respiratory function from the onset (or so it seems) and terrible dysphagia of late. I had a barium swallow and there was nothing "anatomically wrong but could not rule out anything physiologically". Over the last 2 weeks, I noticed that I have lost muscle in my arms by the elbow and in the wrists. I have excess saliva and my speaking seems more difficult as the back of my tounge seems numb. I also get hoarse. Interestingly, the dysphagia comes and goes. I also seem to be in a fog most of the time. My wife keeps telling me the muscle loss is from lack of use as I have been so fatigued over the last 4 months I havent done much, but I remind her that I have been sedentary before and not lost muscle in my wrists and elbows. My tounge has teeth marks on both sides and when I rest it on my lower lip it just quivers.

Today I had a previously scheduled EMG on my legs only that was normal. But the neuro refused to evaluate my upper body and tounge stating the PCP only ordered the lower EMG and NVC. I am still scared to death it's Bulbar onset.

Your thoughts and suggestions are appreciated in advanced.

Thank you, I am very grateful to a support system of this kind. I feel like I have been alone for 4 months now, continuing to tell the DR's something just isn't right.
 

Toto's Dorothy

Very helpful member
Joined
Jan 31, 2012
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Diagnosis
11/2008
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And you came here by? What words did you oo gle to set you in panic mode? There lies your first mistake. Never, ever take advice from him. Its one of those; Get what you pay for deals. And its just not quite working. The only advice I am able to give you is: Turn OFF the com pu ter. CALL your PCP. And ask to be re eval ua ted. Or find a different doc tor, preferably one that has ties to a teaching fa cil ity. If you choose a second doc tor, make sure to get copies of all your te sts and la bs. You are not far from U V A, N I H and of course the number one hos pi tal Johns Hop kins. May be worth the drive for peace of mind. And great free attractions so often under util ized in the Balto/DC area.

Good luck to you,
 

Toto's Dorothy

Very helpful member
Joined
Jan 31, 2012
Messages
1,016
Diagnosis
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Country
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PS I don't have Bul bar, but I do have friends that do. And none of your symp toms soun ded like theirs. MO
 

jamiem

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Joined
May 4, 2012
Messages
147
Diagnosis
08/2012
Country
US
State
TX
Please continue to work with your Dr's. I have bulbar ALS and nothing sounds familar to me. Good luck and lots of prayers. Jamiem
 

Alyoop

Very helpful member
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Jul 5, 2010
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DX UMND/PLS
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NZ
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Keep working with your doctors is by far the BEST advice. Keeping off the internet closely follows.

Your symptoms are wide ranging and could be may things, they may not all be connected. Work with your doctors

The great thing is that your tests are all normal including the swallow test.
 
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