Old 02-02-2018, 06:19 PM #1 (permalink)
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Default Year Long Problems

Where do i begin? I am so scared at this point. Docs have freaked out about my situation. Been seeing a neuro as well for a while and he has seen "changes".


My name is Juan Vela am 36 Years old.
Have been married to my wife since i was 20 and love her more than anything. Have three healthy beautiful kids. I am terrified.


It all stated around Janaray 2017. I was sitting at my computer and had a violent dizzy spell. Like the moitor was strapped to a steering wheel and was turnin left and right. Dizziness still has not left. It has subsided quite a bit but hasnt left 100% I couldnt even walk without feeling like i was falling or going to fall.

Febuary 3 I had a out of the blue experience of the sudden urge to urinate. Powerful and overwhelming had to urinate all the time. Was at a birthday party and kept having to get up. Still is the case but not as severe. Within that time to today the colors change all the time. Sometimes it is dark yellow, sometimes clear like water, sometimes very foamy(no protein in urine or hematuria or infection) i would feel the power or urge to go regardless of what i drank. Sudden high blood pressure. Months ago was normal.

Began to have feeling of golf ball feeling stuck in rectum. Everything is checked and i am fine according to doctors. Feeling lasts for weeks. Ever since then i have to defecate after every meal. From going 1 time a day to after every meal was a rapid change. Still occuring to this day.

Doc thinks i have diabetes insipidus. Mri of the brain comes back clean.

March,
See Urologist. Orders ct scan of abdomen. Everything comes back fine. Bladder and kidney fine. no malignancy anywhere.

April
Begin having odd sensation in chest. Cardiolgist does echo and ekg. Says my heart is that of a teenager. Says i have PVCs. which i never had before.

Around this time i woke up a couple of times with charlie horses in my legs. THey went away after a couple of days

Late May
Feeling tired all the time. Diagnosed with Low Testosterone and Vitamin D. Weird since i was an our door runner.

Would wake up with arms asleep and numb. Began having bilateral altered sensations on forearm three inches away from wrist on back of hand side. Last months.

July
Begin taking shots. and supplements. Testosterone and V Vitamin D Normal.

August
Began having aches and pains bilaterally on deltoids. Sometimes by posterior forearm and hands would lock up and i would lose sensation. Neuro Doctor does a work up says i am fine physically. Does emg of upper limbs and Nerve conduction study. Says i have mild bilateral ulnar neuorpathy at the elbow and mild c6-c7 radiculpathies with chronic limb denervation. Says i am fine. Gives me posture instructions and neck and back exercises. have +1 of left bicep and left pronator teres

September
Fasiculations begin mostly on left arm then quickly spread to every area of my body. While getting a testoserone shot by a nurse she freaks out when my left deltoid twitches violently at injection site.

October
Get to pain doctor orders mri of cervical spine and lumbar.
says i have multiple disc bulges on cervical spin impinging on thecal sac. Herniations on l4 l5 and s1 regions pinching s1 nerve left side. Get injections to calm inflammation.
Docs see twitching. Think nothing of it

Begin having a standing on golf ball feeling on left foot. Goes away after about 2 months.

october
Start getting electrical shock feelings in arms comes in goes when arms are extended. Still twitching and fasiculations are everywhere. Not as violent but more constant now.

November.
Get followup mri of brain. Nothing has changed. all clear.

January
Start noticing my left had pinky finger is weird. cant lift it up as high a right hand . When lifting things left pinky is starting to give way. When looking at pinky notice constant fasiculations like worms by the abdudtor minimi muscle. it is always there. The left adbudtor minimi muscle is also noticeably smaller than the right.

January 29
Go to physical therapist for vertigo and ulnar nerve entrapment. Says my muscle is shrinking and noticeably smaller when she squeezes it it. not so much when eyeballing. . Notices fasiculations on the same muscle occurring constantly. Looks worried. Talks to neuro. Gets same day appointment.

See the Neuro. Says my knee reflexes have changed. THey are hyper and a little spastic. Strenth tests even on left pinky is very good. I am very strong. Says i can just be axious and that is what is causing the hyperreflexia. Sees fasiculations on pinky muscle. Looked worried. Say fasiculation on right arm randomly. He looks at me atnd says he is going to do an ALS Workup emg, ncv, biopsy, blood work, and mri. Thursday February 8th 2018 will be Emg and NCV for final diagnosis.

He is a very kind man, caring, but people and most docs would treat me like i had anxiety. I have been told by doctors that i have so and so many times. He now knows something is going on. His worried look on his face and change of tone really scared the hell out of me.

The last year has been hell. So many doctors, so many problems that they diagnose that i never had ever before. They all say something is wrong. Spine could be it, Low Testosterone could be it. Low Magnesium which I dont have could be it. Low thyroid which i dont have, low b which i dont have. They see my urine and have no explanation for the color or foaminess. No explanation for the fasiculations, no explanation for the bilateral calf cramps i was having for weeks around the Achilles tendon. Or for the sudden drop in Vitamin D and testosterone which is now rectified.

Rhemologist says i am fine
Endocrinologist says D levels and Hormones are now fine.
Cardiologist says i am fine. Have PVCs though
Gastro says i am fine.
Urologist says i am Fine
PCP says i am fine
Neuro said i have trapped ulnar nerves at elbow bilaterally. Mild c6-c7 radiculpathies with chronic limb denervation mild.
Now running more tests after spastic reflexes on knees that werent present before and visible fasiculations and constant fasiculations on pinky ADM left hand. Tapping it can activate fasiculations when resting.
Pain Doc says have herniations in cervical and lumbar with pinched nerve and thecal sac impingement both areas.
PCP Says something is wrong with me for sure.

Now I am waiting and terrified. No one seems to have an explanation for all these things. I have videos and reports of lab reports of everything.

To top it all off i have had 2 of my three kids sick with the flu, oine went on iv then to the er after severe temp spike. She began crawling on the floor from leg pain. and other son is now sick. My wife is over worked from trying to become a principal and didnt do so well on the exam. Barely missed the passing grade by 2 points. AI am so proud of her for all the other things she did but that is weiginh heavily on her .Then my sick kids that i know ill get better, Finally me. In a way i wish should would just leave me so i wont cause her any more pain from what is going on with me. That is either me being a coward or me not wanting to see her suffer which is selfish since that is me thinking of only my feelings and not hers. i dont know

I am trying not to think the worst. But I am so tired of doctors and uncertainty. I just want a diagnosis. Even if it is ALS at least i can have closure and move on from this uncertainty which has been hell for me and my wife.I cant do this anymore. An answer will give me at least closure and peace to move on with my life one way or another. I have been reading your forums and feel your situations. Seems like may were relived to just know even if it was a life changing discovery. The closure gave peace. These next few days are going to be rough. I will post the results when i get them. Regardless i am going to be on this board for a long time. I feel as many of you have before the diagnosis. Just haven't received one yet.

Does any of this seem familiar? What are your experiences. Do they resemble mine? I am so scared. Been crying typing this sorry for all the typos. Love you all!
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Old 02-02-2018, 06:32 PM #2 (permalink)
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Default Re: Year Long Problems

Everything you wrote and the way the you wrote it is pretty consistent with anxiety.
But nothing you mentioned, absolutely nothing, has anything to do with ALS.
I rather suspect the doctor who is getting you worked up for an EMG is trying to show you proof that you don't have it. He's worried about your anxiety.
Unfortunately, objective proof that you don't have ALS won't cure your anxiety.
Ask your primary to consider therapy.
Again, there is nothing in your post, absolutely nothing, that should lead one to suspect ALS.
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Old 02-02-2018, 06:54 PM #3 (permalink)
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Default Re: Year Long Problems

On reading your post, ALS does not jump out at me. I realize you are dealing with a lot. I wish you the best, but please donít lose sleep worry about ALS.
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Old 02-02-2018, 06:59 PM #4 (permalink)
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Default Re: Year Long Problems

I am very sorry to read what a year you have had and all that is happening.

There is absolutely nothing in your post that even remotely resembles ALS however. I do hope your doctors can figure it out and help you soon, it must be awful going for all these tests. All the best.
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Old 02-02-2018, 08:38 PM #5 (permalink)
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Default Re: Year Long Problems

Totally concur with the no ALS comments.

Had it not been for the ALS workup, I doubt you'd have found this forum with that bizarre, sensory pile of non ALS symptoms!

Good luck, you don't belong here!
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Old 02-02-2018, 08:53 PM #6 (permalink)
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Default Re: Year Long Problems

I don't see any indication of ALS in your post. However, I do see many red flags for anxiety. Stress can cause most of the symptoms you describe, including PVCs.
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Old 02-02-2018, 10:43 PM #7 (permalink)
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Default Re: Year Long Problems

Atsugi I wanted to say thank you for responding to my post. This year has been rough. But your words are very encouraging. You have taken your time which I appreciate a lot. You make me feel much better which is what I needed. Neuro did say I need to go to another facility after this if I test negative for ALS because he is saying there is something going on. I did test positive for Spotted Fever antibodies and had a high Rheumatoid arthritis factor and low testosterone and low vitamin D. There may be neurological damage from the spotted fever. too many things. Either way Thursday will either point me towards ALS or send me to specialists that deal with effects of spotted fever. Thank you again, you took your time to answer. That speaks volumes about you. At least there is still love between people these days.
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Old 02-02-2018, 10:50 PM #8 (permalink)
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Default Re: Year Long Problems

KarenNWendyn Thank you for taking the time to respond it means a lot to me to calm my nerves. I have been sick so long that i don't know what to do. When i heard ALS workup i freaked out and broke down at home. Been a bad year uncertainty is painful. I will be going to San Antonio after this to speak to some specialists. I had tested positive for spotted fever antibodies. I heard this causes nervous system disorders and bladder problems. Thank you again for your time it means so much to me. Keep being a good person. We need more of those now more than ever. Blade Runner is my Favorite movie one thing i learned is that time is the most valuable resource. And you gave me your most valuable resource. Not to sound corny but that is love. Will let you guys know what results are on Friday.
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Old 02-02-2018, 10:58 PM #9 (permalink)
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Default Re: Year Long Problems

Affected thank you. it is hard not knowing what is going on when you feel wrong. My problem is i like answers sometimes we are lucky to get them, sometimes not. Just an answer to say you have damage from x and you will have to deal with it. Either way i am nearing the end i have some answers some uncertainties. Rhemologist on Monday will say how bad the spotted fever affected me. Didn't even realize i had it until today a while ago. That is very dangerous if left untreated. Causes very similar symptoms now that i look it up. Some people lose bladder control and get pains in lower extremities and have permanent neuro damage. Got to see doctor about that on Monday. Then Thursday is my als workup. I will keep you posted. as to the results. Thank you for taking the time to answer my questions it means so much to hear from a person who has seen it. I can at least feel better until Thursday. I am going to be more hopefully thanks to you! You gave me hope that is a special thing.
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Old 02-02-2018, 11:10 PM #10 (permalink)
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Default Re: Year Long Problems

GregK Thank you for your time. I like how you were straight o the point. I try to be like that. Iam going to follow up on my exam on Thursday see what they find. Then see my rhemologist Monday about my dx of spotted fever antibodies. Then i will let you guys know! keep the faith and be yourself. Aint going to waste your time. That is a compliment.
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Old 02-02-2018, 11:27 PM #11 (permalink)
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Default Re: Year Long Problems

KimT Stress is definitely a mind body thing. maybe you are right this is all just one big snow ball effect from what happened. Was never a worrier or hypochondriac until the first symptom hit. it was one thing after another. I may have got so use to being sick maybe i am convincing myself i am. going to some follow up exams for spotted fever that i was confirmed to have had. Causes some bad issues as well. ALS workup scared the hell out of me. Thank you again you are right a lot can be due to stress. It means so much you giving me your time.I am truly grateful. Please know that i am sincere. I will post my test results on Thursday. i am sorry to everyone last thing i want to do is waste peoples time, but i know you are giving hope. What better gift that that as well as time? Thank you!
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Old 02-08-2018, 11:21 PM #12 (permalink)
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Default Wishing you all the best

Just popping in to say to all of you you are in my thoughts. Wishing you all the best and hope each one of you is surrounded by love. Love is what makes us human. This place I see is full of love and kindness. Please keep being decent people. World needs more love. You bring peace to calm storms in peopleís hearts. And clarity to confusion. You convert fear into hope. And most of all you care!

Love

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Old 02-08-2018, 11:27 PM #13 (permalink)
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Default Re: Year Long Problems

Mod note: Moved to original thread.
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