Currently Undergoing Tests For ALS

[CatM]

Just to give an update and to ask a question, please? I'm rescheduled for the EMG the 27th of this month.
Isn't dysarthria a symptom of Bulbar ALS? My neurologist said dysarthria isn't a symptom of a neurodegenerative disease. My primary has diagnosed dysarthria. Is ALS a neurodegenerative disease?

My neurologist has also said I don't have eplilepsy but yet the EEGs showed activity which indicated the diagnoses per his notes, he's prescibed an anti-seizure med, as well as counseled me regarding epilepsy seizures. Needless to say, I'm not comfortable with his abilities.

Since my primary couldn't reach my oncologist to request the brain be included in the PET scan, she's ordered a whole body PET including the brain. She did state that he should've done it first thing when I presented to him with obvious speech difficulties as well as balance issues.

 

[lgelb]

Yes, ALS is a neurodegenerative disease and dysarthria is a bulbar sign of ALS (though also Parkinson's, stroke, MS, etc. as you know). Not sure why that statement would be made. I agree that it might be time to move onto another neuro whose communication is more in line with results/realities -- preferably at a large neurology practice with subspecialists in neuromuscular and seizure disorders.

 

[CatM]

Thanks for the clarification and your suggestion, Igelb. I'm waiting for the EMG and PET results and if warranted will consult a neurologist or oncologist at Ohio State. I'm somewhat limited as to how far I can drive and am forced to wait as well on a good friend who's visiting next month and has graciously offered to drive the five hours.

 

[CatM]

Update on my situation: Well it turns out the EMG appointment was moved to the 27th of May, which as we know was Memorial Day.
The appointment for the 27th of May disappeared from my patient portal and they rescheduled to the 27th of this month, so I'm still waiting. Its unfortunately not the first time they've scheduled me locally for appointments by mistake on holidays when they're not in the office.

I'm scheduled to see a new neurologist in Columbus Ohio (out of town) tomorrow, at Wexner Medical Center Neurodiagnostics. My friend from the west coast came in a week ago to drive me up there and back. They wanted me there the day after I spoke to them on the phone, after the new neurologist received files from my primary, but I couldn't make arrangements that fast.

Muscle weakness has now progressed in my tongue, and its even more of a struggle to speak. I can't eat certain foods due to the consistency of the food. Only things that don't require much chewing and easily swallowed whole.
I'm experiencing more weakness in my legs, arms, and hands. Left eyelid has a noticeable droop more than the right. I forgot to previously mention the jerking. Its in my hands, legs, and face. The other day as I experienced a seizure, my eyelids fluttered and my face jerked quite hard. I'm hoping the new neurologist can expedite the EMG, possibly perform his own tomorrow. My primary scheduled me for a whole body PET scan that'll include my brain on the 19th of this month.

 

[lgelb]

As Nikki noted, it's possible that MG is still on the table. I'm glad you're getting another eval and continue to believe that this is all more treatable than ALS.

Generally, the EMG will have to be scheduled separately, but you should at least have more information tomorrow.

 

[CatM]

Thanks Igelb, for your reply. Another strong possibility is that its the lymphoma now attacking my central nervous system and has evolved into brain mets. I have low grade B-Cell lymphoma, which you can live with for many years having better quality of life as opposed to other subtypes and when it goes more aggressive, ideally is very treatable. You get 5-21 years from the point of diagnoses before that happens. I'm at 21 years from diagnoses.
I can't have treatment for it due to having CVID (Common Variable Immunodefiency). The deficient IgM has caused adverse life threatening reactions to all antibiotics and the treatment for my type of lymphoma requires rounds of antibiotics beforehand. I've been told by my oncologist that when the lymphoma goes aggressive, it'll move very fast and there's nothing they can do for me.

We have a saying in cancerland, "You don't know anything for sure until you do", meaning you don't waste precious time worrying what the next diagnoses is going to be. All I know for sure is, something is very wrong. I hope and pray its not ALS, MS, or the cancer adavancing. I hope its something treatable, that my body won't reject the treatment for.

 

[lgelb]

Lymphoma recurrence is certainly a possibility, though I thought you had said brain mets had been ruled out not long ago?

If this is in fact cancer, I would certainly seek a second CCC opinion on your treatment options; a quick scan of the literature suggests that there are in fact effective regimens for addressing concomitant CVID and BCL.

 

[CatM]

The lymphoma has been in remission, 'no evidence of disease' (NED), which doesn't mean it isn't still lurking. With the subtype I have, you can experience many remissions throughout the years with remissions eventually growing farther apart and more infrequent until it goes full blown aggressive. Non Hodgkins Lymphoma can evolve into Leukemia or Multiple Myeloma, which are sort've 'cousins' to lymphoma.
My father passed of Multiple Myeloma which he developed due to the chemicals he worked in at a factory (damage to DNA), I was conceived at the time, suffered mutations to my DNA as well and was born with an Sertoli-Cell ovarian tumor which went malignant (The lymphoma is a separate cancer). This increases the odds that the lymphoma will evolve into Multiple Myeloma, which oncologists have been watching me for.

Unfortunately I'm not a candidate for treatment of CVID.

I've seen the Columbus neurologist, who examined me, and feels its not ALS. He still wants me to have the EMG and PET. He's running all sorts of tests from blood work and most have come up negative (Lyme disease and such). He's running a Myasthenia Gravis panel, we're awaiting results on that one still. He says Multiple Myeloma is still on the table, as far as a diagnoses. As a matter of fact, its been narrowed down to either MG or Multiple Myeloma. He wants to see me back in his office, August.

Question: Why would he still want the EMG results, if he's so certain its not ALS?

 

[CatM]

I've gotten more test results in. Its not Multiple Myeloma. I am however, no longer in remission with the lymphoma. Test results for the MG haven't come back yet.
I hadn't really checked out the symptoms of MG. I have a policy which is, 'don't ask questions if you're not ready for the answers'. I have been doing a fair amount of research just within the past two days. I did not know eyelid droop is one of the symptoms. My left eyelid started drooping recently, especially at the end of the day when I'm even more tired.
I also answered my own question about why he'd still want the EMG results. I know it's not ALS but still its another disease process on my plate and combined with 'not in remission anymore', I'm feeling a wee bit overwhelmed right now.

Please allow me at this point, to express just how courageous I think those of you are who DO have ALS. I thank you for the opportunity to learn more about ALS, and people who live every day with it. I admire your family members and caregivers as well.
I really had no idea what you go through.

 

[Nikki J]

Sorry to hear about the lymphoma recurrence. Your previous comment about eyelid issues was why I brought up mg before. It can often be treated fairly successfully so it isn’t the worst diagnosis though you would rather not have it

Wishing you the best outcome possible and thank you for your kind words

 

[CatM]

Thanks Nikki for your reply. You were spot on about the MG symptoms. More test results have come back and I show no antibodies to the Acetylcholine Receptor.
Would the results include a clear positive or negative of the muscle-specific tyrosine kinase (MuSK) antibodies, or would that be something he'd have to order separately? He said he was doing an MG panel. He didn't do the ice pack test.
I'd rather it be MG than CNS lymphoma.

 

[Nikki J]

MuSK is usually done as a reflex. Meaning if the first test doesn’t give an answer they then do it. Can you see the order? Does it say reflex anywhere? Or maybe they just ordered both separately. It is possible to have seronegative mg though. I hope it does turn out to be mg for you. It is a strange world where serious diagnoses are still what we hope for. It happens with ALS too

 

[CatM]

Thanks for your reply, Nikki. He tested me separately for MuSK as well. Just now got the results back, which are negative.

I do co-operate with my oncologists, allowing them to study my case in the event that it'll lead to treatment and maybe even a cure for other diseases, like ALS. As I'm sure you know, cancer research has already led to treatment for other diseases.

Its my hope that some day soon, we'll no longer have to choose, as I'm sure its your hope too.

Next up is the EMG next week. I had to reschedule the PET scan, due to the record breaking heat wave we're experiencing this week. Heat is no longer my friend, especially when extreme. They scheduled me for next month.

 

[CatM]

Update:
Well, the EMG was scheduled for the 27th of last week and the doctor who was supposed to perform the test called off, the day off the test. They rescheduled me for the 22nd of August.
I've messaged my primary (who ordered it) to see if she can do anything about expediting the reschedule. I've been trying to get this EMG for 7 months now, and I'm not getting any better.

Subsequently, I was told by the scheduling clerk that the test "isnt that important anyway, its just to check for numbness".