4 years no answers

[help1127]

I have posted on here many times over the last 4 years. I started with abdomen twitching 7 years ago to body wide twitching 4 years ago. I have been seen every 3 months at 2 ALS centers by two ALS specialists and what I have so far is.
Positive Hoffman
Very brisk reflexes all over even my jaw
I have what I would describe as weakness in my legs when coming down stairs my legs shake
General fatigue. I sleep alot
Sleap apnea
Few beats of clonus. But I can self induced it to the point it won't stop unless I change position.
Pain and discomfort in my shoulders, knees, legs, and lower back.

Up to this pint my doctor say I definitely don't have ALS because I don't have any weakness or atrophy.

I had to push him for another emg that is scheduled this Friday. The last one he did he found some radiculopothy on my left leg and did not want to proceed.

I really feel as if things are progressing slowly. Any advice would be helpfully or if anyone has had the same symtoms.

I do suffer from alot of anxiety which I'm taking medication for.

Thank you all,

 

[KimT]

It sure doesn't sound like ALS. Radiculopathy is a condition caused by a compressed nerve in the spine that can cause pain, numbness, tingling, or weakness along the course of the nerve. That is not ALS. Did your EMGs show anything besides that?

Didn't they already rule out ALS.

What treatment are you getting for sleep apnea? What did your sleep study show and are you overweight? I'm assuming you were given a c-pap for apnea, yes?

4 years is a long time to be followed without a diagnosis. What do the doctors think? Do they agree that you don't have ALS or PLS?

 

[help1127]

Yes, they don't believe it's ALS. I do have back issues but not that bad. I have a compressed vertebrae at L5-SI and mild stenosis at the cervical and lumbar region. No central stenosis just a few bulging disks touching my spine. Yea 4 years is a long time but I'm at a lost with the clonus, hoffman, and brisk reflexes. They did say I have a small syrinx in my cervical spine that can be causing some of the umn signs.

As for the sleap apnea I'm on a c-pap machine which I hardly use because I'm an idiot. They found 28 episodes which is why the they prescribed me the c-pap.

I also get the pain in my hips, legs and lower back. Plus twitching that bounces around at times. It's not that bad. I had really bad anxiety because of all of this and have seen different mental health specialists who have adjusted my meds, but at times I still get anxious. I also get this tightness around my abdomen that feels like spasticity even though the doctors say I don't have spasticity, or babinsky sign.

I would move on from this dreadful thought but I continue with symtoms that bring me right back to a neurological disorder as no one can give me an answer.

I'm scheduled for another emg this Friday as I have not had one in over a year. I'll keep my fingers crossed..

 

[help1127]

Yes I'm overweight I'm 6' tall 220 lbs. I don't get shooting pain down my leg but I do get pain in my thighs, hips and lower back. I understand I am one of 1000 people on here asking PALS questions. But I feel that the medical community doesn't fully understand all the symtoms plus think pain is not associated with ALS. I'm also having difficulty with my right shoulder now for a while aND it bothers me more when I do something strenuous.

 

[Atsugi]

You have been diagnosed. Anxiety.

Steve, have you read your previous posts? I have, several times. Also, some of the people who answer you also go back to read your historical posts.

You literally called your doctor an idiot. You indicated disdain for the medical community. You have experienced doctors with years of specialty training, some of the smartest people in the world. They've tested you up-and-down, but you reject them.

Long time, 4 years. With kids, too. I'm so sorry to see you wasting your time. I hope that you a directed to the correct specialty and get cured.

Good luck.

 

[lgelb]

1127, you are indeed leaving a lot of better health on the table by not using the CPAP. Sleep heals much of what ails anyone. Plus, untreated sleep apnea can lead to heart and lung disease, which aren't going to improve your life.

Best,
Laurie

 

[help1127]

Mike,

With all respect you always reply to me as I'm not aware of my previous posts. I am well aware I have anxiety. I was diagnosed with anxiety when I was 17 years old I am 41 years old now which in my opinion makes me an expert of what it feels like to have anxiety. I'm here because I haven't requested emg's or additional testing but my neuromuscular ALS specialists have continued to monitor me every 3 to 6 months. Now if I was completely in the clear they would not do so.

Anxiety does not cause your right bicep to tighten at times
Anxiety does not cause your abdomen and back muscles to tighten either.
Anxiety does not create a posited hoffman, of hyperreflexes.
Anxiety does not cause sleap apnea.
Anxiety does not create radiculopothy.

I have been dealing with my Anxiety but if my neurologist was so sure that it was not a neurological issue than why would he not dismiss me and send me to another specialist?

I'm not hear to pissed anyone off but I do feel that in some way it educates me and others to read what I been going thru.

Laurie, I will make another appointment with my pulmonologist to see if the c-pap machine needs adjusting or if a different mask will fit better.

All I know is that before I never had clonus but as per my last clinical I was found to have a few beats.

So that's what has myour mind spinning. It's always something new.

 

[Firefighter58]

1127 ! You became a pain in the ass a long time ago and I think it is time you went somewhere else and totally wasted some other groups time.
Al

 

[Atsugi]

Hey Buddy, I'm trying to be respectful, too. I hate to see you suffer, but I don't see any end in sight.

I bring up old threads in order to keep your history together. Many in our community find it really difficult to go rooting through, trying to find previous posts. If they don't see the whole picture, how can they give the best advice? They want to help you, too.

Since you've had a pathological level of anxiety for decades, I agree you are an expert of "what it feels like to have anxiety." But you're not the only one. I have had acute anxiety many times when the pressure was on.

Once, I wore a neck brace for six weeks because the stress of my job was pulling my neck muscles.
Another time, I woke up curled in a comma shape, in great pain. The doc called it stress, gave me Valium and sent me to the shrink. I was so stressed out that EVERY muscle in my body cramped up.

1. Anxiety does not cause your right bicep to tighten at times >>>> OH YES, it does!
2. Anxiety does not cause your abdomen and back muscles to tighten either. >>> MINE does. That's the usual way I feel stress.
3. Anxiety does not create a posited hoffman, of hyperreflexes. >>> Both are seen in normal ppl. Hoffman is esp seen w/ +reflexes. (I'm not a doctor, I'm just quoting a doctor.)
4. Anxiety does not cause sleap apnea. >>> You're 41. Lots of us get sleep apnea. I have "severe, severe, very severe" sleep apnea, according to my doctor. I don't think it's got anything to do with ALS, though.
5. Anxiety does not create radiculopothy. >>> Pinched nerve? Compressed spine? I don't think it's got anything to do with ALS.

You said: "if my neurologist was so sure that it was not a neurological issue than why would he not dismiss me and send me to another specialist? "

Typically your GP refers you to the neuro and the neuro does what the order calls for. It's not the specialist's job to comment on other things, especially outside their specialty. If your referring provider says to them, "pls r/o ALS," then they are going to rule out ALS (if possible) and move on to the next patient. Your GP should be the one coordinating all the specialties until finally a dx and tx happen.

Clonus: "I was found to have a few beats. " Lots of reasons for clonus.

You aren't "completely in the clear" of all disease. But they HAVE said, "no ALS."

Has anyone told you that if you had ALS starting 4 years ago, you'd probably be dead or at least very disabled by now?

 

[Angiegal]

Hey...
Just sayin'.... I was diagnosed 2 yrs ago..... My one arm is now completely useless (except to keep my shirt sleeve from looking empty), my other arm is starting to progress (negatively), and one of my ankles is weakening.....
My progression is very slow.

Speak to your anxiety dr.

Angie

 

[help1127]

Thank you and God bless

 

[help1127]

Well I had an emg of my legs, hips, lower spine, and left arm. Basically the nerve conduction was perfect, the EMG showed large motor potential in my outer calf muscle in both legs, all other muscles are fine. As per my doctor it's not ALS but he is leaning to a rare heriditary neurological disorder. He sent me to get more blood work. The only problem is that on both sides of my family the only neurological problem has been Parkinsons, and I don't believe it's heriditary.

Wondering if any one else on here has gone down this road? I knew It was more than anxiety unfortunately. But now I feel like I'm limbo and my symtoms are slowly getting worse.

Can I apply for disability or Social Security without an official diagnosis?

 

[ShiftKicker]

Thank you coming back to report the emg findings.
I am sure people who are familiar with SS and disability procedures in the States will pipe in.

~F

 

[lgelb]

Medicare/SSDI will require a dx that is on "the list." If there is reason to believe in an adult-onset hereditary neuromuscular dx, I'd get yourself to an MDA clinic and explain your situation -- they'll have heard this one before.

 

[help1127]

Here is the responce I have just received from my doctor. I don't know how he tell the difference betweven motor neuropathy and ALS just because the affected muscles were in my legs. Plus I have a positive Hoffman, very brisk reflexes and clonus. Can someone here that is more in tuned with this please explain? Here is his message.


The electrical abnormality in the muscles was limited to the muscles in your lower leg and the nerve conductions were normal in sensory nerves. This combination suggests a motor neuropathy. The shape of your feet and legs suggests this may be hereditary or congenital. Some of these conditions have signs like clonus associated. Hopefully we will be able to do the genetic testing in the future. YOU DO NOT HAVE ALS!!! I will see you for your follow-up.