I feel helpless

[LUTHER]

For the last four months, I have experienced a rapid decline in health. It started with severe constipation, in which after every series of gastrointestinal test, nothing was found,except that my parsistalsis had slowed tremendously. From that point I began having problems with my legs, numbness and progressive weakness to this point where I can barely stand. I then lost movement in my hand arms and shoulders and have lost 40lbs in four months. My legs constantly cramp, and spasm especially at night. And now I am having difficulty breathing at night and trouble swallowing. The gastro said there’s nothing wrong, my PCP after months of pressing, finally sent me to a neurologist who is scheduling an EMG. With all my blood test coming back normal, Yet having so many symptoms of ALS, I just feel hopeless in trying to get answers.

 

[dldugan]

Sorry it has taken so long for PCP to do the referral. I went through more than 60 tests before I had the first EMG which the neurologist suggested did not indicate ALS. I insisted on another EMG at a highly rated Clinic/Hospital which diagnosed ALS. I gave him a list of the locations I would accept. Keep pressing until you get a diagnosis. Hopefully it is not ALS.

 

[LUTHER]

At the rate that I am declining, I’m not sure that I will need an answer.

 

[Nikki J]

Did you see the neurologist? What did they find on your exam? Did you have abnormal reflexes, sensory abnormalities, clinical weakness ? Have you had brain and spinal mris?

Waiting for tests is very hard. I hope you get answers soon

 

[dldugan]

Only you can judge how you feel. If you feel the issue is getting critical and you cannot wait for the EMG you should consider going to an urgent care facility associated with your PCP and/or neurologist as an associated facility will probably have access to your medical records. They can help determine if you need hospitalization. Alternatively, if you get to the point of being unable to function you can go to an emergency room at a hospital, preferably one with a neurologist on staff.

 

[LUTHER]

I have recently seen a neurologist, and they just did preliminary and scheduled a EMG test. I have off balance walking and unstable gait like a shuffle. Can’t do much walking for the shortness of breath and the trembling in my legs. I’m trying to get an appointment in advance with a neuromuscular specialist in ALS because the appointments are so hard to get, Yet they won’t schedule until the first set of test are done. As for the spinal, and MRI not yet. Thanks for you assistance!

 

[LUTHER]

Thanks, I agree with you. Unfortunately I had a situation where I couldn’t urinate, so I was rushed to hospital. While there my legs were trembling and shaking as were my arms and hands, which is what the muscles do after I exert them in normal day ( the normal fatigue is overwhelming, just talking exhaust me and I have lost my voice) When I relax the muscles spasms. I tried to tell them I needed a neuromuscular dr. They determined I needed a Urologist and potassium. They only treat symptoms and won’t dig deeper. Hopefully the neurologist will oversee the process go forward. Thanks

 

[KarenNWendyn]

Luther, you clearly have something seriously wrong but it does not sound like ALS.

Slow intestinal peristalsis and numbness are not part of ALS. The time course for all this to happen in 4 months would be really atypical for ALS.

If you didn’t have the intestinal problems and numbness, then ALS would be in the running, but it would have to be a very aggressive form, and the neuromuscular specialist should have answers for you.

Meanwhile, I’m wondering what kind of a general medicine workup you may have had as malignancy and autoimmune disease are considerations to be ruled out. Any skin rashes, fevers, kidney test abnormalities, findings on chest X-ray? MRI of the brain? Abnormalities on blood count?

Fingers crossed it’s something other than ALS. Hang in there and let us know how things pan out.

 

[LUTHER]

Had blood work up, checked for malancies, tumors, chest X-ray and CT scans clean only thing left is brain MRI.
Will keep you posted.

 

[LUTHER]

As I look back, there were other signs prior, such as, hand cramps, difficulty writing, stiffness in my ankle that I assumed was an Achilles issue. These were all prior, but it was the persistent constipation issue that got my attention and all subsequent issues to follow. We shall see what happens going forth.

 

[LUTHER]

Question. Was having difficulty breathing especially when I fall asleep at night. Last two nights it hasn't happened. Now I'm wondering, are the nerves gone to such a point that I don't feel it anymore?

 

[lgelb]

That is not how ALS works. Breathing difficulty isn't a sensory feeling, it's a muscle failure.

 

[Clearwater AL]

LUTHER, as you wrote...

" Was having difficulty breathing especially when I fall asleep at night. Last two nights it hasn't happened."

Key words, " Last two nights it hasn't happened."

That symptom relates to Anxiety not ALS. True ALS symptoms do not come and go.
It is a progressive disease.

You have written and posted new ones post after post. Most do not relate to ALS.

You have written that you have been scheduled for an EMG.

To post anymore new symptoms will not help you here UNTIL you have that EMG.

I hope your EMG is in the near future. We've had hundreds of posters who have had
to wait for their EMG. So, you're not the first.

Again, you've about covered it all. Posting any new symptom isn't going to get
you any relative answer. Now it's up to the EMG... which you're probably going
to find as good news that you do not have ALS.

Be patient.

 

[LUTHER]

Well, I’m nervous and anxious. My EMG is a few days away and I want to be wrong about my symptoms. I have experienced so many other things since my original post, Yet this day is I hope answers for me. I thank you all for your courage and patience in dealing with so many of us who haven’t been diagnosed and have expressed our fears, perhaps not realizing fully that you are actually living through and with ALS. Thank you all so much, Monday 11/5/18, I will post my EMG results, and Bless everyone on this site.

 

[LUTHER]

Sorry it has taken so long for PCP to do the referral. I went through more than 60 tests before I had the first EMG which the neurologist suggested did not indicate ALS. I insisted on another EMG at a highly rated Clinic/Hospital which diagnosed ALS. I gave him a list of the locations I would accept. Keep pressing until you get a diagnosis. Hopefully it is not ALS.

May I ask you a question,Dldugan? You said that you had your first EMG which your neurologist suggested did not indicate ALS, yet you insisted on another one, What made you pursue further and not accept that EMG as correct, as it obviously now proved not to be?