Old 03-02-2014, 12:31 PM #1
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Default 8 years of symptoms/3 year update

My old thread is closed again so I am updating.

My symptoms started in 2006. They were mild and would come and go. Some of my symptoms still are like that.

I've have been followed by a Als clinic since 2011 at which time I had hyperreflexia in my knees everything else was normal. My emg picked up occasional fasci only in 2011 and 2012, reassured NOTHING was wrong with me. I was diagnosed with BFS and dysautonomia.

2012 I was sent for a second opinion to a more experienced neuromuscular doctor. I was told I had a normal exam even with a Hoffman, jaw jerk, and hyperreflexia now. I was reassured, again, there was no disease in progress. I had anxiety and BFS.

2013 my regular/original ALS specialist now said I had umn syndrome. There is no change in my clinical exam. I still have a Hoffman, hyperreflexia, and a ? Jaw jerk. She referred me out of state to another ALS specialist for a THIRD opinion.

This specialist said my emg and clinical COMPLETELY clean/normal. (Wrote this in his doctors notes too) Again it seemed strange since i know I still have hyperreflexia, Hoffman, and sometimes a jaw jerk. He also stated his emg picked up NO fasci. (Which doesn't seem truthful).

2014-my regular/original specialist asked if my third opinion doctor agreed with the umn syndrome DIagnosis. I said no, he said I was completely fine. He saw no evidence of any mnd in progress. I told her I was confused by all this now and I feel that I've been misled and lied to. She explained that he was 'comforting' me but they all (the doctors) understand each other. I think the patient should understand too, don't you?

On my latest exam, by her, I didn't have a Hoffman or clonus. She said I was getting better. She checked for a babinski (4 times in this visit) and said it was now present twice and not present twice. This was the first time this was ever present. I do not believe I am getting better when my symptoms are worse.

I explained my symptoms to date, which are everywhere at different degrees. My worse symptoms now is my leg and arm. I'm limping since late January now and resting my arms to blow dry my hair. My leg feels dead and tingles sometimes. This has been happening, mildly, on/off for a few years. She said I do have umn syndrome/disease and there is no cure.

She said it will NOT progress and it will NOT turn into Als, not even UMN dominate ALS. (I don't know how she knows this-words of 'comfort' maybe?) I told her the third special told me I would have Als not pls, if I had anything, since I have fasci. She said technically he's right because fasci are LMN but mine are benign.

I'm suppose to go back every 6 months to check progression.

At this point i try to live my life as best i can. I am getting weaker (not clinical) and feel progression. The doctors explanations still confuse me. I don't know who to believe or trust. How can I? They all contradict each other.

Has anyone else experienced a situation like this? It's so frustrating.
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Old 03-02-2014, 03:24 PM #2
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Default Re: 8 years of symptoms/3 year update

Reread your old threads and the answers you got there.
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Old 03-02-2014, 04:07 PM #3
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Angry Re: 8 years of symptoms/3 year update

hey monster! i feel your pain....in 2010 i had a left sore knee, 2011 right leg weakness and inthen followed by right foot drag...now i am walking with a walker! shortness of breath on any activity still know definate diagnosis...my body is betraying me day by day, my choking is getting worse to the point of not being able to get air in..thank god my husband was with me the last time it happened , yesterday..i am afraid to eat alone...but really my coughing starts even when i am not eating..scarry all the time...take care of yourself , we are the only one's that do!
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Old 03-02-2014, 05:34 PM #4
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Default Re: 8 years of symptoms/3 year update

Alsornot, I feel for you too. What are your doctors telling you? I'm hoping your doctors will help you soon. Maybe a emg will help?
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Old 03-02-2014, 07:34 PM #5
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Default Re: 8 years of symptoms/3 year update

I'm sorry to hear of the trouble you are having. I've had ALS for nearly 6yrs. I was initially diagnosed before an EMG, but had an EMG for definitive diagnosis. My EMG was done by a neuro who operates 2 ALS clinics. He told me everything is consistent with ALS, but LMN involvement was barely perceptible. He said that's why I was doing so well, but he let me know it will progress. It's been 16 months and it has progressed just a little. If you haven't, you might try MAYO CLINIC, or a Neuro who operates clinics & has plenty of background with the diseases, the patients, and reading & properly evaluating EMG results.
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Old 03-03-2014, 04:47 PM #6
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Default Re: 8 years of symptoms/3 year update

Summerguy,

What were your beginning symptoms and what are they now? PM me if you like.

I've been followed by a neurologist since 2009 and a Als clinic since 2011. She sent me to two other Als specialist, both with over 30 years experience.

I honestly believe all the Als specialist I saw know what's wrong with me. After reading about it, I believe it's umn Als but time will tell.

All the testing has been done. I think they are just waiting for the criteria to be met before they officially diagnosis it.

I have heard of a few doctors, such as yours, that diagnose early. Maybe mayo does?

Thanks taking the time to answer my thread and for your advice. I will think about going elsewhere. All these specialist have ruined any faith I had in the medical profession when it comes to ALS and just left me frustrated now.

I hope your progression continues to move very slow! My best to you and thanks again!
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Old 03-07-2014, 10:55 PM #7
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Default Re: 8 years of symptoms/3 year update

monster,

My earliest symptoms were:

a contortion of my body leaning sideways to the left with my right hip towards the right. I could not stand up straight.

A numbness of my entire R leg when sitting once or twice

my R leg would suddenly "vanish" and I would fall (happened twice). Immediately after, my R leg would feel normal again with no problems.


At a later date, I had painful cramps in my calves, especially the R calf. After 2 or 3 days they were gone. Now, my R leg is the worst although I use it in stretches and walking in the hall.

I hope this may help you in understanding your condition. I believe they (neurologists) have a very incomplete picture of ALS and many other Neuro diseases because there currently are many research studies looking into various aspects of this multi-dimensional disease, and hopefully soon another drug treatment will be available. It is a slow process of trials and experiments. I've been taking Riluzole twice a day. My Neuro told me he thinks it is more effective than what is said about it. I read something recently saying additional research shows it is better than originally thought.
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Old 03-12-2014, 05:22 AM #8
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Default Re: 8 years of symptoms/3 year update

I appreciate you taking the time and helping me summerguy!

I too believe that it is a slow process with much more research needs to be done.

My best to you
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Old 03-16-2014, 01:32 PM #9
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Default Re: 8 years of symptoms/3 year update

I would say if you EMG was clean I would forget about bring concerned about ALS . Clearly is it is not an issue you are very lucky.

Rick
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Old 03-16-2014, 03:19 PM #10
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Default Re: 8 years of symptoms/3 year update

Hello rick,
He, my third opinion specialist, did tell me it was clean. I was happy hearing that. I received he's report and it states:

Needle EMG of the left arm and leg covered C-5-T1 and L5-S1 myotomes. We also tested L5 paraspinal muscles. There were no abnormalities. Specifically, we did not see fasciculations, fibrillations or myotonia. I was wondering why he wrote 'SPECIFICALLY'? like he didn't look beyond that?

There was no mention of ins. Act, PSW, MUP's ect. In his report.

I've never seen a report like that. I do know that umn sighs don't show on the emg.

I do appreciate your thoughts and opinion, thank you!
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Old 03-16-2014, 04:52 PM #11
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Default Re: 8 years of symptoms/3 year update

Suspect he wrote specifically because he was addressing the concerns in the clinical reason given for the test to be done. Does not mean at all he would not look for or comment on other abnormalities if there were any. Congratulations on a clean EMG.
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Old 03-17-2014, 10:41 AM #12
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Default Re: 8 years of symptoms/3 year update

If you don't believe what neuro #3 told you about the EMG, get a copy. (I think every one should always get a copy of all their test results.)

If there are indications of ins. Act, PSW MUPs, etc., and he didn't mention them, then you have a huge issue with that neuro. If there was no ins. Act, PSW, MUPs, etc., then I don't see any signs of active or chronic denervation and in my non-doctor opinion, I don't see how it could be ALS. Get a copy of the EMG. Everything is speculation and anxiety without that solid starting point.
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Old 03-17-2014, 12:13 PM #13
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Default Re: 8 years of symptoms/3 year update

hello monster...been out of touch for a few days....finally...my family dr. called this morning...there were abnormal findings on my 'evoke potentials' and it is indicitive for a neuro muscular disease...i asked him if it was MS and said it would be best to go back to my neurologist...considering my worsening symptoms of coughing and choking and feelings of throat spasm after two years i will finally be diagnosed on my next appointment. its been a long frustrating few years feeling no one believed me and my symptoms....now at least i have the satisfaction of saying ' i told you so'! keep positive and listen to your body...only you know how you truly feel!
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Old 03-17-2014, 01:10 PM #14
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Default Re: 8 years of symptoms/3 year update

Nikki- thank you for your opinion on my emg.

Dusty- I also appreciate the help you have given. I am skeptical because my original Als specialist, on her 2012 emg, wrote unsustained spontaneous activity in all muscle tested, but in the chart section she listed normal or 0 for everything.

Later, in my 6 month check up, I asked her about the spikes we saw. She then admitted they were fasciculations. So she fudged the chart section-in my opinion.

So when I went to the third opinion Als specialist and read the copy of his emg report, posted above in message#10, I read it with uncertainty.

I think I'll call the office and ask for clarification if he SPECIFICALLY saw any PSW, MUP's, ins act. Etc.

Would you find this to be a reasonable request? The emg was done 9/2013.
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Old 03-17-2014, 01:38 PM #15
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Default Re: 8 years of symptoms/3 year update

Hello alsornot,
Thank you for coming back and sharing your personal experience with me.
I am glad you are getting answers and I'm sending the most positive thoughts your way that it's not ALS!

All my best to you
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