New to the forum

[Smjacobsdmd]

My local neurologist confirmed this week that he considers that I have ALS with overlapping neuropathy. I first saw him in November of 2020 ( when we could venture to the Dr.’s offices again). I had numbness on the right side of my body with no pain or weakness most significant on the right arm. Head MRI (second in 2years) came back clean and he said It was a form of migraine (I had aura w/o headache for 2 years that was resolving), wanted to see me back in 2weeks but office couldn’t get me in for 10 so he confirmed his diagnosis in February of 2021 and sent me on my way. October and symptoms had gotten a bit worse with my shoulder and underarm now significantly numb. Called the office and no appt available until at least Feb, 2022. Finally got in for appt. March, 2022.
In the interval, while on vacation, my right arm became weak—I couldn’t lift my carry on to the overhead bin. He had another MRI —this time of head, cervical and thoracic spine and scheduled a NCS/EMG which couldn’t be done till June. After the test, as he was leaving he casually said, “I think you may have a mild case of Lou Gehrig’s Disease” and ordered a panel of blood tests and a swallow test and another MRI of the whole spine , recommended that I see someone for pt and ot and said see you in 2-3 months. Again, front office said no appointment till four months so I opted to see the Nurse Practitioner. Swallow test came back normal, 15 vials of blood and 4 hours at the LabCorp finally said my vitamin D was a bit low and the office said to take vitamin D.

My wife and I were tired of not knowing or getting any feedback or knowing the results. With my sensory symptoms, the algorithm said MADSAM neuropathy was more likely(but then I had no idea what he saw on the EMG.) we talked with my GP and he made a referral to the Mayo Clinic—Jacksonville that my Health Plan approved and I am set up to see their ALS specialist in October with a visit to the EMG/NCS the next day and follow-up consult the next week. Well this week, I saw the Nurse Practioner locally and she consulted with my neurologist who came in and said that, no I definitely have ALS and it can’t be anything else. As an afterthought, the NP prescribed Riluzole and gave me a handout to look for info online and scheduled to see me in 3 months (which again, I had to insist with the front office to schedule it.

Reading about Mayo, it seems if they also confirm, I’ll get scheduled for a ALS clinic that will likely be way easier to Schedule than I can locally. They also have a ton of clinical trials there. Which brings me to my Rx for Riluzole. It arrived at my CVS (they had to order it) but haven’t picked it up yet in case I might get in a trial. I think I’ll go ahead and start and risk it rather than any more delay.

By the way, my symptoms are still my right shoulder which is very week as well as my right bicep which has visibly atrophied. My hand still functions except the numbness and pins and needles makes proprioreception difficult. Still can hold a 40 lb deadweight but can’t hardly lift my coffee cup. The mix of motor and sensory is very strange.

 

[Nikki J]

Sorry to hear this. Glad you are going to Mayo. Everyone needs a second neuromuscular opinion and I believe as you do clinic is helpful especially at the beginning

you should start riluzole asap both for the benefit ( it works best started early) and for any possible trial. I do not believe any trial excludes it as it is standard of care but you need to be on a stable dose for 30 days prior to intake visit. also trials generally have a time from symptom onset limit. It is often phrased as onset of weakness so it sounds like you are ok but be sure to be very clear about when the weakness happened. Good luck

 

[affected]

sorry to welcome you here, but you will get lots of great info and support

 

[KevinM]

I’m very sorry for your diagnosis, and also for the lack of information provided by your neurologist re: the results of
of the EMG. I am also from the Tallahassee area, so feel free to send a direct message to me by clicking on the envelope icon at the top right of the page. Best, Kevin

 

[KevinM]

I meant to add that you have every right to request and obtain the EMG/NCV test results as well as the clinical exam results. Go down in person if you have to and obtain copies. Mayo will require copies of every test that has been done and it is best to know the details before you go. Once you get them you can post the EMG here with your personal information redacted if you choose, since there are several of us that are quite experienced at interpreting results and giving our non-professional opinion.

An MND diagnosis depends as much on a thorough clinical exam as an EMG, since there are many reasons for an abnormal EMG, including the occasional EMG that initially is not abnormal. You didn’t describe any clinical results, but reflex testing, strength tests, balance tests, etc. are critically important. Do you know the results?

I also saw where a swallow test was ordered. Do you know those results if you have had it done? A swallow test is normally not ordered at the outset unless you told them your symptoms also included some swallowing/ speaking/choking issues, or if the exam showed things like tongue twitches or other things the neuro might have noticed. You probably know this from doing some research, but these are called Bulbar symptoms.

We certainly understand if you choose not to go into more detail, but rest assured we are here to help within the limits of a forum like this that is not intended to nor able to replace your physicians. Again, wishing you the best, Kevin

 

[Smjacobsdmd]

Thanks, Keven. I will try to message you, right now I tried the pm but it didn’t work to give a chance to choose a recipient. I will contact Tallahassee Neurological this week and get my info from them. I think Mayo also wanted any images I have had so that is also next.

 

[affected]

You need to post here more before you can send PM, it's a spam protector. Mods can help you get an important message through tho.

 

[KevinM]

I keep forgetting that. Moderators, remind me again how I can send my contact info. Thanks, Kevin

 

[KimT]

I've been to both University of Florida (Jacksonville) and Mayo (Jacksonville). I think Mayo is a good choice as they do have access/information to trials whereas U of F has great doctors but they're extremely busy.

I wish you all the best. You do need another opinion.

I also have sensory issues. They've been with me since my diagnosis.

 

[affected]

Kevin you should be able to PM, it's Jacob sending one back, but you can always PM another way to contact.

 

[KevinM]

Tillie, I triEd to send a message and it said I can’t send one to him. I’m also not on Facebook or Twitter so can’t go that direction.

 

[affected]

Yikes @KevinM I'll get you some help!

 

[ShiftKicker]

PM sent!

 

[KevinM]

Thanks so much for your help on this convoluted issue! I received a test email last night and responded this morning, so hopefully the connection has been made. This is such a distressing time, and I hope I can help answer some questions and be a source of support.

 

[Smjacobsdmd]

Thanks all for the support and helping me get in touch with Kevin.
I have attached my (hopefully) deidentfied EMG/NCV test results which was suggested.
I will also give a bit of the clinical history: sensory symptoms began at least as far back as 2020; first motor symptom occurred Feb, 2022 with shoulder weakness—could not lift suitcase into overhead on plane. This was same arm that I had seen neurologist about in 2020 and 2021 for the numbness unilaterally on the right side. 7 months later, I’m awaiting my visit to Mayo in Jacksonville in about 5 weeks and have the shoulder weakness with noticeable atrophy of the right biceps and shoulder muscles.
I had 2 trip/falls early in the year both while wearing flip flops and stubbing my toe which neurologist considers evidence of foot drop. Still walking a mile or two daily and can manage stairs and no more tripping. No weakness that I see in right hand and can still write although that is complicated by the reduced sensation and pins and needles that spread from the upper arm down to my hand. Left side has no symptoms yet but is worrying since that would decrease my dexterity greatly.
Hoping that Dr. Oskarsonn at Mayo can shed light on how these processes relate.
FYI, got started on Riluzole this week. No problems yet, but inconvenient that it is an empty stomach med and my Xarelto is with a big meal.
Any feedback would be appreciated. I must ration my posts until I am trusted by the algorithm.