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Old 08-07-2013, 06:50 PM #1
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Default My story

Hi all. After browsing the forums, I thought I would lay out my story to see if anyone can relate to it. I'm going to lay it out in timeline fashion for clarity's sake:

before January 2012 - I was an avid runner who recently completed a full marathon, 2 half marathons and several other races. I was gearing up to run another marathon in March.

January 2012 - I started to feel sluggish in my runs, and if I ran for too long (over 6 miles), I would start to have pain in my left leg that felt like burning.

February 2012 - I visited my primary care physician (PCP) about the issues with my left leg that would not go away. During this time, I also had numbness and tingling in my left arm. I was referred to a physical therapist for an EMG/NC study. She found "motor nerve damage" in my RIGHT leg.

February 2012 through July 2012 - Both of my legs, and then my feet, felt increasingly pained and a tad weak after running. My daily mileage dropped from 7-8 miles to 3 miles. The left arm issues disappeared.

late July 2012 - Almost overnight, both of my legs started to feel REALLY weak. Concerned, I went to my PCP, and he referred me to a neuro. The only thing the neuro could find were "brisk reflexes" that were "off the charts" in my patellar deep tendon reflexes (DTR). The neuro called for a complete MRI and several blood tests. My left arm started to feel sore and weaker than the right arm at this point.

early August 2012 - The MRI was essentially normal except for an enlarged thyroid that had a multinodular goiter. The neuro did another exam and remarked that I "appeared more normal than appreciated 2 weeks ago". He referred me to an ENT concerning the goiter, and he also referred me to a neuromuscular clinic. About that time, he dropped the term "ALS" on me. Also, my right leg started to feel like the knee and behind the leg would "give away" if I wasn't careful.

middle August 2012 - I started to get twitches in my left knee. Further, my left arm continued to feel out of sorts. The ENT said that my thyroid issues were in no way related to my muscle weakness, and that was that.

late August 2012 - I visited the neuromuscular specialist. After a clinical exam, she asked me what I was afraid of. I told her ALS, and she flat out said I did not have ALS. I mentioned my earlier EMG/NC, and she promptly dismissed that. She gave me an EMG/NC on both my legs and my left arm. She could find nothing to point to ALS. She did write in her report that I had brisk (+3) patellar reflexes. I feel a little better afterwards.

early September 2012 - A followup visit to my neuro goes uneventful. He remarks that my reflexes are "less brisk".

November 2012 - My legs start to feel worse. My running becomes more sporadic, and it starts to feel uncomfortable to stand up for longer than 1 hour. I start getting twitches in both legs and feet. I occasionally get them in my left arm.

February 2013 - My right arm starts to feel weak. The twitches start spreading to both arms.

April 2013 - My left hand starts to feel clumsy. Additionally, my right arm starts to feel a bit weaker. My right leg has a fairly constant weakness around the knee area. The twitches are more widespread.

May 2013 - My tongue starts tingling. Everything else seems the same. I change states (finished my PhD)

June 2013 - I go to a new PCP about my worsening symptoms. He orders blood tests and a thyroid ultrasound based on my history. My swallowing starts to become difficult, and I feel like it's more of an effort to speak correctly.

late June 2013 - The blood tests indicate that my fasting glucose is high (111). The tests also indicate that my red blood cell and hemoglobin counts are higher than normal. My thyroid ultrasound reveals 2 nodules in one lobe and the other lobe looks to be mostly filled with large nodules. My TSH and T4 levels are normal.

early August 2013 - My speech still sounds awkward to me, but my swallowing issues seem to have cleared up. My legs and arms seem to feel even weaker now. It's a tad painful and tough to do anything too tough with them. I've stopped exercising altogether for the past 3 months because it's getting really uncomfortable and hard to do cardio. I'm scheduled to see an endocrinologist in November (they don't seem very concerned with the nodules) and a neuro in December (lol).


That's it. Should I still be worried about ALS? Also, can anyone relate to what I'm going through now? I admit that I may sound crazy, but it's really maddening not knowing what's wrong with me and having to wait for so long to nail down a diagnosis.
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Old 08-07-2013, 07:02 PM #2
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Default Re: My story

I forgot to mention that I had an EMG/NC on my right leg in July 2013. It came up essentially normal, except for nerve damage on my feet which the neuros thatere attributed to my distance running past.
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Old 08-07-2013, 08:56 PM #3
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Default Re: My story

Hi there
Have any of the doctors detected weakness on exam ( clinical weakness) or is it purely perceived weakness? Do other people perceive speech issues? A recent EMG that was essentially clean after 18 months points away from ALS as does the improvement in swallowing. 18 months is a long time too to have symptoms that are not clearcut. Progression varies of course but it is a long time in the ALS world. What do the doctors say?
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Old 08-07-2013, 09:31 PM #4
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Default Re: My story

Hi,

None of the Drs. have noted any clinical weakness. 2 neuros (one a neuromuscular) did not note clinical weakness a year ago. The new PCP I saw recently said I was "quite strong", and the people who did my 3rd EMG/NC a month ago said I didn't appear weak. The last 2 checks seemed kind of cursory though. As for the speech issue, no one has mentioned anything. I have noticed that I am being asked to repeat myself sometimes.
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Old 08-10-2013, 12:03 PM #5
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Default Re: My story

I would really like some more input, please.
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Old 08-10-2013, 12:25 PM #6
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Default Re: My story

See your endocrinologist. Thyroid issues can wreak havoc on a body. ( I have Hashimoto)

If your doctors were concerned about ALS - you'd know!

As Nikki said, 18 months is a long time in our world. I'm nearing 18 months since diagnosis; what I've lost is gone for good. My symptoms don't come and go; the intensity may change, but not the symptoms.

Maybe your body just plain needs a rest - a PhD is a long arduous haul. Congratulations!

Stop worrying about a fatal disease will ya?
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Old 08-11-2013, 06:27 PM #7
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Default Re: My story

Thank you ottawa girl. I'd have to say that this entire deal has taken over my life. I'm nervous about standing up, walking, and talking for too long because my legs, hands and tongue just feel more awkward and uncomfortable the longer I do these things. I wish I knew how to relax, but it seems like everything sets me off.
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Old 08-11-2013, 07:09 PM #8
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Default Re: My story

If you don't find an effective way of managing your anxiety, you are going to get sicker. Really. Anxiety is truly hard on a body and mind. There are very good options to treat it. I would urge you to seek psychological help ( and yes, maybe medication as well) while you go through the process of diagnosis. It can be a long long road, so try not to make it bumpier than it has to be.

What are your plans now that you have your doctorate? Are you looking to do a fellowship? Please, don't put your life on hold! Many folks here have waited years for a diagnosis, yet they have managed to get on with their life. Many others, await a "label" for their condition, and still go to work. It's their inner strength, I believe, that keeps them going. You need to dig deep and find your centre. Overcoming the anxiety over your health issues should be job 1.

I think you do NOT have ALS. Evidently, neither do your doctors. You appear to be the only one who thinks so. Given your education, I've no doubt you are often the smartest guy in a room - but not this room. And not this time. Please get help.
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Old 08-12-2013, 05:36 PM #9
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Default Re: My story

Elaine,

You're right, you know (about the health anxiety). I guess my deal is that I'm frustrated that nothing has come from spending all that time and money. I just continue to feel worse everyday, and I've got no one to vent to. I don't want to tell my mother because she has problems of her own, and it would cause her a lot of stress to have to worry about me. I stay as upbeat as I can when I'm on the phone with my parents.

As for therapy, I have been on it before. About 8 years ago I just "knew" I had cancer, and no doctor could convince me otherwise, so I made an appointment with a therapist. I got on citalopram (which I am still on), and I started to feel better. I stopped seeing here, and I got on with my life. I'm thinking that maybe I need to see a therapist and maybe get on stronger meds.

As for what I am doing now, I do have a job here in Ohio. I moved from Georgia here about 3 months ago because I got a job offer. Maybe the move and the new job are just keeping the anxiety ball rolling.

tanks again for your help. I'll keep everyone informed if there's any change. Maybe someone an learn from my experience.
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Old 08-12-2013, 05:42 PM #10
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Default Re: My story

I think you are on the right track and that should give you some comfort. A big life change like that can bring on all kinds of fears and you are very brave for admitting it.

Find a therapist and see about the medication then give it 6 months or so and see where things stand. I bet they will be much better. Good for you and good luck.
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Old 08-14-2013, 07:25 PM #11
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Default Re: My story

Done. I've sent my new PCP a message about my mental issues. The irony is that I had to be seriously drunk to do it. Don't worry, I'm still a grammar Nazi even when I'm drunk. I'm just tired of wasting my/you all's time with these issues when my mental issues are the metaphorical elephant in the room.
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Old 08-14-2013, 07:39 PM #12
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Default Re: My story

I am proud of you. It takes a big person to admit when they have a problem. You are not wasting time here if you found help with your issues. Once you get the mental issues under control I hope all the other goes away too. If not then you can address them then. Peace be with you. Be happy.
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Old 08-14-2013, 08:39 PM #13
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Default Re: My story

Yummy,

You are officially back to being the smartest guy in the room! Great move calling your PCP. Attago!

Be sober when you see him/her will ya?
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Old 08-14-2013, 09:41 PM #14
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Default Re: My story

I will Elaine. I've been mulling this decision for days. After I decided that all of my "symptoms" could be explained by anxiety (which I have a history of), I decided that enough is enough, and I needed to address my problem. I'll keep the boards posted on my progress. I hope my decision to help my mental state would end up inspiring someone else to do the same.
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Old 08-15-2013, 02:37 AM #15
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Default Re: My story

Yummy....Good thinking and Best wishes to you
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