Finding a doctor

[Fraben]

Last July I had an appointment with a neurologist after several months of ALS symptoms. My EMG was normal so he told me I didn’t have ALS despite my symptoms of fasciculations, cramps, weakness, insomnia, constipation, etc. Since then my symptoms have worsened. I can barely talk, use a walker, trouble swallowing, breathing, sleep during the day. I can no longer open a jar or bottle. My joints hurt and muscles are stiff. I saw another Neuro yesterday - supposedly an ALS specialist. He had his assistant do an exam and review my written list of symptoms - I was hoping not to do much talking. When the Neuro finally came in he told me that based on the exam and the fact that I can walk and use my arms, I don’t have ALS. Furthermore, the EMG I had 14 months ago proves it. It must be in my head, so he referred me to a psychiatrist. He acknowledged that my swallowing and speech issues are troublesome so he ordered tests. He said there is no reason to order another EMG. I am at the end of my frustration level in addition to not feeling well. Did anyone else experience this type of issue and how far along did you have to be before an ultimate diagnosis was made? Thank you.

 

[Nikki J]

If you are reporting your symptoms accurately it seems odd you were refused another emg although if he wants other tests first it is not unreasonable. Often it is the last test done. my sister who was clearly going to have ALS diagnosed given symptoms and family history had everything else first. The “ advantage” was after the emg she was immediately given the diagnosis rather than being told it likely was but more tests needed to rule out mimics. there are certainly good doctors in Pennsylvania including UPenn and Temple but ifyou are already ordered tests like mris blood, swallow and breathing I would get them done as they are helpful. The emg is important but only one piece

 

[Fraben]

Thank you. I took great care in reporting symptoms even looking up past tests like CK, Dexa (I have Osteoporosis). The hospitals you mentioned are too far for me and I don’t drive anymore. I lost faith in most doctors.

 

[grounded]

I was diagnosed at Univ of Pittsburgh Medical Center. They do clinic and ALS research.

<link to ALSA removed because of donation button; map of US centers is here -- mod>

 

[Fraben]

I had an EMG last July after several months of symptoms. It was normal. I went to a different neurologist in September who said despite my symptoms, based on the superficial exam done by his intern, I don’t have ALS and referred me to a psychiatrist. I had my primary get me a script for an EMG which was done yesterday partly by Dr. Alissa Romano, head of the ALS clinic at Lehigh Valley Hospital. She said it was normal and I don’t have ALS. My question is how reliable is this test in determining ALS? I had to give up my passion as a musician because I am no longer able to play the guitar, lift the equipment or drive. I gave my instruments away and sold my van. I have fasciculations all over my body, tight muscles, cramps, joint pain. I can’t open a jar or a soda bottle. I can’t walk without a cane or a walker. I have fallen several times. I go hoarse after a few minutes of talking. Food and liquid gets stuck in my throat. I’ve had a catheter since my bladder failed last July. I can’t lay flat without being short of breath so I sleep in a recliner. I was even suffering from laying on the table for over an hour yesterday. I have a BM once a week. I wake up with my shirt soaked from drool. I sleep about 5 hours at night and 2 during the day with nightmares and an awakening headache. I scratch myself to blood. This doctor told me this is all in my head. She saw me suffering to breathe and had to help me off the table. My wife asked me how many doctors do I need to see before I get the answer I want? She has to drive me everywhere. I’m at the end of my rope. Any suggestions would be appreciated.

 

[Bestfriends14]

Many of the things you post are sensory related and point away from ALS. The fact that you have seen multiple neurologists and had several EMGs, all of which the results showed no ALS, would be something you need to believe at this stage.

I don't doubt that there is something going on, but with so many symptoms and test results pointing away from ALS, I would continue to search for answers other than looking for ALS. It must be frustrating to be brushed off by doctors, but if its not ALS, it's not ALS.

I wish you luck in your search. Take good care

 

[Fraben]

Thanks for your reply.

 

[affected]

What did the head of the ALS clinic diagnose you with? If you are this disabled, and it is neurological in cause, they must have given you a diagnosis. You only report what they say you don't have.
There is no way you are this disabled due to ALS and it does not show on the EMG. Where have you been referred to now - another specialty for something systemic maybe?

 

[Fraben]

Thanks for your reply. No diagnosis is applicable since they claim the test was normal. I am not disabled, but find everything, including talking very difficult. She didn’t refer me to anyone, just said I should be happy I don’t have ALS. She obviously is not in my body, although she saw firsthand how I was suffering. I’ve read that the EMG test is only as good as the person who administers it and that some people have to take it several times despite having moderate or advanced symptoms. My personal opinion is that since there are only 5,000-6000 new cases of ALS per year, doctors find it hard to recognize. I think that in Allentown-Bethlehem, PA they probably only see a few cases per year.

 

[Nikki J]

You stated Dr Romano did your last emg. She is board certified in neurophysiology and trained at George Washington and then fellowship at Beth Israel in Boston She is hardly inexperienced or not qualified to do EMGs with that credential and those experiences. If you are dissatisfied seek a second opinion but be sure to ask what is wrong woth me as the main question rather than is this ALS

 

[Fraben]

I should have been more clear on my post. I mentioned that Dr. Romano “partly” did my EMG. That main part where you receive the electric shocks was done by a technician. She printed a report and gave it to Dr. Romano who stuck me a few times with a needle. She then said it was all normal. She continued to say that the physical exam done by Dr. Varrato’s intern last month ruled out any disease anyway. The original neurologist I went to last year told me that my symptoms were out of his normal area of practice and gave me the names of 2 neuro specialists, both at St. Luke’s, not at the health network he works for. I found this strange and I wanted to stay with LVHN so I made the appointment with Dr. Varrato and my subsequent referral by my PCP to Dr. Romano for the EMG. I will take your advice about not mentioning ALS as I reluctantly make my next appointment with one of the St. Luke’s doctors. Thank you.

 

[Nikki J]

It is utterly normal that the shocks ( nerve conduction ) were done by a technician and the needles by Dr Romano. The needles are the actual emg and the part that matters in ALS. Every institution with which I am familiar including Mass General and NIH does it that way. When you say intern are you sure? Not a resident or fellow? Again it is common for senior residents and fellows to do the bulk of clinical exams and the attending to come in after for a comparatively brief time. My first appointment at MGH followed this patterns as have a number of my follow ups- more often than not. I realize you have nothing to compare your experience with but I assure you it all sounds normal. The more senior the doctor you see the greater your chance of also seeing a resident or fellow as part of the process

 

[affected]

Pretty sure you need to take a breath, and step back, and go see your PCP and ask what is next.
Honestly, you are being examined and tested by very highly qualified people.
You believe not all are diagnosed correctly.
I can assure you that no one has every been diagnosed here by arguing the validity of tests with us.
Please do work with your doctor to get on track with whatever is going on, as it sounds like you have been clearly told what is not going on.

 

[Fraben]

Thank you. Dr. Mbydeen is listed as a Neurology resident graduating from Med school last June. I didn’t really have a problem with her doing the exam until I found out that her English was limited, not understanding some of the words I had written down and she was very tentative in performing the exam, like she hadn’t done it before or had limited experience. When she was done she said “I guess I have enough to go over this with Dr. Varrato”. I don’t blame her. I blame Dr. Varrato for allowing her to do this unsupervised with poor language skills. By the way, I have had two proper neurology exams. One was years ago when I had neuropathy and carpal tunnel and last year at the original Neurologist who later referred me to his office’s competitor.

 

[affected]

wow, just wow.