Status
Not open for further replies.

help1127

Active member
Joined
Nov 19, 2013
Messages
95
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
FL
City
Orlando
Hello everyone,

My username says help1127 and I have been trolling this site plus asking questions for 3 years or more. through all of this I have many symptoms on top of that I have seen 4 neurologists and 3 ALS neuromuscular specialist at USF and UF Shands. I also know I have been suffering through a whole lot of Anxiety so Im going to give a list in order of my condition make it easier to read. Also please do not disregard my symtoms to justanxiexty or strees unless you have proof to back that up..:-o

year 2000
1.Muscle twitches started in abdomen and were isolated there for 3 years. It only really affected me at night. even more if I had a few drinks

year 2013
2. I sold my house moved into a new house and the twitching returned with a vengeance. It was now all through out the day.

Year 2013
3. Then I started my new job and at this point I was worried and concerned over the non stop twitching in my abdomen. i call my GP he had me come in and had me try some acid reflux medicine. Help with the acid but the twitching was still there

2013
4. Got into the car and the twitching was everywhere. Well at that pretty much flared up the anxiety. Any way my GP said unless I cant move a limp i dont have ALS.. yea ok..

thru 2013 t0 2017 and I will list this in order
1. I seen a local neuromuscular specialist who did the first emg No ALS you are fine

2. my second visit with him a few months later repeat emg no als you are and don't return unless you have foot drop or something (guy is an idiot for saying that)
2. 5 months later had another Neurologist perform another emg that now showed soom what he called redicolopothy in my right thigh. Everything else was clean.

3. 2014 had a visit at USF who noted brisk reflexes and hoffman but my emg was clean

4. Returned to USF end of 2014 for a clinical and everything was the same.

2015
5. Had an appointment with my local neuro hed noted brisk reflexes 3+ and EMG of one side came back clean

end of 2015
6. USF performed anothe EMG of my right side and everything was clean

beginning of 2016
7 Seen Dr Pulley at UF Shands he did his clinical found brisk reflexes, hoffman, and on my emg he stated 2 areas in my calf showed radiculopothy

end of 2016
8. DR Pulley did only a clinical as he did not feel that a EMG is necessary. Same nothing has changed

Beginning 2017

9. Return visit to Dr Puley as I am now experiencing tightness in the muscles in my legs, torso arms, and neck to the point I cant get comfortable or sleep. He did the clinical exam, pushing and pulling said I was stronger than before on all my extremities plus the muscles in the bulbar region tongue, air in cheeks, facial muscles.

He said he is absolutely shore this is not ALS do to the fact that my strength was impressive, Plus that after more than 3 years of the same thing going on that something by now would show up. He did note that I have naturally hypereflexes and the hoffman almost everyone has including himself plus he also has the hyperreflexes plus that my stiffness was not spasticity he said it was tension from my anxiety. No emg needed

Well so that sums up my journey up to now. Im on some new anxiety medications that i just started today and Im not feeling the tightness right now keep my fingers
crossed. If anything Im worried about the tightness not being spasticity

I would have liked to get another emg just to see if there has been any difference but he said that do to my exam it did not require an emg. No weakness or atrophy.

I hope that my tightness and its everywhere is caused by the craziest anxiety to man. But im kind of worried with the hyperreflexes and the tightness only being anxiety with hyperreflexes and positive hoffman plus a few beats of clonus. He said the clonus was normal with paitients that have anxiety. A real big pill to swallow dont you agree. I was thinking PLS before I got there and not to mention the extreme fatigue and shortness of breath.

If anyone has similar stories or can relate to what is going on or has another point of view please share your suggestion. OHH and when i say stiffness Im not saying the little stiffness that get in your neck. Im talking big time stiffness that will keep me contracted, makes it difficult to sit, cause pain makes me walk in smaller steps. Makes me feel like i need to vomit and lay on my side in order to go to sleep.

Hope this can shed some light on a possible hypochondriac and extreme worrier. Please keep an open mind and lastly you can throw in the anxiety card. I just never heard of anxiety causing all of these symptoms
 
I moved your thread. Suggestions problems and bugs is to discuss website problems not clinical ones.

Not sure what we can tell you. No clinical weakness, radiculopathy on EMG ( seem to remember you had spinal issues on an MRI that correlated?) and an ALS expert says no ALS after about 4 years of symptoms

Have you addressed your spinal issues and any other identified medical issues? Did Dr Pulley provide any direction? I would go back to pcp Anxiety can certainly do major things to your body. If everything checks out please discuss with your pcp

You have been cleared of ALS several times by experts. We can not see you, we are not your doctor. Follow up. Address stress as we all should but I think you must know you are in the wrong place here
 
Hi- I've read back over your posting history to take in all the details. You have a lot of posts here over the years.

While you may not be able to consider anything other than ALS as a source for your symptoms, there are many things that can cause your varied health concerns. I do not think you belong on an ALS/MND forum. However, that does not mean I am dismissing your symptoms. Obviously they are affecting your day to day life.

I note that you do not believe your doctors when they tell you their professional medical opinions. You have scoffed at the offered assessment that anxiety causes tension. If you feel your doctor is dismissing your symptoms as anxiety, your next logical step would be to rule that out by going to see someone who specialises in mood disorders. You may have something physical that is exacerbated by anxiety.

Regardless, you have only stated that the doctors tell you "No ALS", but you have not mentioned what type of therapies (drug/physio) these doctors have recommended for you. Even if they don't know the source of your symptoms, there is a great deal they can do to mitigate physical distress. If you are not being treated with medication or physiotherapy, I recommend you go back to your doctor and work with them to find some relief for your symptoms while you further explore all of the many possible causes of your condition.
 
Hi Steve, how are the kids? Teenagers and driving by now, aren't they?

This has been a rough decade for you with lots of changes.

I can relate. As you know, I don't have ALS, but I twitched like crazy during the 80s.

You talked about a lot of symptoms over the several years you've been here, and I've had them all. When I retired from the military, I decided to follow my wife to her next job location before looking for work. A year later, we were relocated, My wife went to her first day at the office, and it was time for me to get a job like a man. At the time, our kids were 3 and 1, I think.

That same day, the first day I was to rejoin life as a productive member of society, I woke up in the worst pain. My body was shaking all over, my neck was so cramped up I looked like a pretzel. So I went the doctor and he gave me a Valium and a referral to a psychiatrist. After the first psyc visit and his perscription for a little bit of Zoloft, I was instantly happy as a clam, sleeping well, waking up ready to rule the world. I started my own business and was very well occupied the rest of that decade.

Steve, I can't diagnose you. But I can say that your next trip needs to be to a doctor who has both an MD for the body and a PhD for the mind. Yes, indeed, a little bit of change in your life can physically warp your spine and make you twitch like bag of Mexican Jumping Beans.

Don't forget that the brain is an organ. I know from experience that it can make you see things that aren't there, hear things that no one else hears, and it can change your perspective, your memory of events...everything.

Now that I think about it, I was 42 years old, just about the same as you. I wish you luck.'

One more thing: if you had ALS on the day you proposed a walk from Orlando to Jax, you'd be dead by now, or at least in a wheelchair. Time to close the book on this.
 
NickyJ, I'm here to discuss the situation I am dealing with that has been going on for so long. I know no one here is a doctor and can give me a diagnosis based off a text message. All I look for is to provide information of what I am dealing with. Plus see if anyone has been down a similar road that can provide a suggestion of they been thru.

Shiftkicker, Thank you for your reply. I have been dealing with different doctors regarding my Anxiety. As for now nothing is really working. Dr Pulley put me on my original medication and a additional one as of yesterday. I can feel it working a little today so we will see. But my legs shake when going down stairs and I feel like my legs are not moving correctly. Don't know if you can relate. I just sent him an email and he responded.

No respite respitory onset without weakness of any limb or after more than 3 years
No to ALS
No to clinical issues that are alarming. Says reflexes are hyper but same in all limbs. Plus when he was there he did it to my sister she nearly kicked him and he did it to himself and he had them pretty brisk as well. I just know what I feel and it doesn't feel right. Hopefully this new medication will do the trick.
 
Mike, I hear you and yes I need to move on as this has literally consumed my life for over 3 years just a complete cycle of madness thinking when will I get worse, when will I trip, when will I choke, etc.. The crazy thing is that I feel all these symptoms in my body and it creates a living he'll in my mind. The only thing I can do now is to keep going and live with anxiety or whatever is going on. Since I started this journey I have lost my wife and my house. I now reside with my sister. I had a good job but lost it due to not being able to mentally perform. At this point I'm taking some time off just to get the meds right, get better then return to the world of the living "God Willing".
So yeah I posted a lot over the years but not as much as some others..lol. You know they really need to come out with a test for this that way people can get a diagnosis and go on vacation get their things in order before it's too late or be able to give people like me anow answer. I'm sure I have spent thousands of dollars over the years.

But yeah he said he did not find spasticity or babinski, I have Hoffman and hyperreflexes but not pathologic plus I have had it that way since this all started... The only thing that's new is this tightness around my trunk and everywhere else.

And yes the kids are grown my daughter is a sophomore on the varsity softball team and my son is 14 he quit baseball but doing really good in school.
 
All I look for is to provide information of what I am dealing with.

Unfortunately we don't know what you're dealing with. Only a physician can help determine that. What you've been told is that you are not dealing with ALS which is a WONDERFUL thing. The folks here are dealing with a terminal illness and can't moderate an anxiety forum as well.

Your best bet is to get to the bottom of the anxiety issue by working with your doctors to find something that will work.
 
I'm working on it right now Christine. I realize this topic is a waste of time for most to reply. The unfortunate truth is that I keep having these symtoms and they are driving me nuts. I tell you if this is all self induced anxiety symtoms that mimic als than anxiety has had me beat. Now it'seems time to work on the anxiety. I thought my story would sound to someone else that could relate and give me their opinion.

In all honesty the reason Imy still here is because of people that have not been diagnosed at first told no als then to find out they have it. That's my #1 anxiety. You guys know who they are as I don't want to say any names.
 
Shiftkicker, My doctors tell me I don't have spasticity but if I don't take Ativan I will literally stiffen up like a board. I'm talking everything, hands, arms, neck, torso, and legs, the onesame that bother me through most are my torso and my legs. Does you doctor see spasticity when he examines you, because my doctor can't lift my leg and get me to relax. He than puts my leg over his arm and straightenes my leg then bends it real quick. He said there is no catch and if therequired is no catch then it's not spasticity. I just think I may be going crazy, hyperreflexes equal in all limbs, and Hoffman. But the tightness is really what hurts to the point I can't even sleep at night especially at my abdomen.
 
Your doctor is right. Stiffness is not spasticity. Stiffness can sometimes be a result of spasticity causing muscles to be overworked. Spasticity is caused by issues in the brain, preventing muscles from getting proper signals from upper motor neurons. There are ways doctors can detect this.

Please, we can not help you here. You must seek proper medical attention. If you don't believe your doctor, go to another one. You have made 54 posts over the course of 3 years. You have been answered so patiently by so many knowledgeable and experienced people. This is not a healthy or helpful place for you.
 
The difference between and some others if this could be als is that. I am very well informed as to the procedures, the tests, and so, on. But I also know many individuals on this site that where we're I am now to be told later PLS or something else. Reason being is that in some people the disease is not so obvious or may very slow. That is why the keep us coming back every 6 months. Do I need another doctor "no" I'm already seeing 2 of the best doctors here in FL. Do they see certain things that are suspicious "yes". Have they made any conclusion as to what is going on "no". Why, because I don't have any weakness after 3+years of this going on. So the only course of action is for me to continue to follow up every 6 months. And that is grounds enough to have someone's anxiety out the roof..lol. seriously..
For right now my only option is to go with what the good doctor said. Control my Anxiety and see where I stand once that is handled.. OK no problem but again my mind starts going into overdrive. If it's nothing then they should say your fine done don't ever come back..lol..right?
 
I get this really bad tension around my abdomen. It feels like someone is squeezing my muscles but my muscles are not tight. No one can figure it out other than its probably anxiety. I know I have bad anxiety but sometimes I feel as if when something is not apparent then it's always anxiety. Has anyone experienced this tightness around the abdomen.
 
Status
Not open for further replies.
Back
Top