Feeling Like a Forum Refugee

[Jules4boys]

I was fast tracked on this medical journey 1/28/16 after finally seeing a doctor for my chronic nasal regurgitation... turns out it's a lot more than a quirk or nuisance! Now I am on a puréed diet because I have neurogenic dsyphagia with atrophy, dysphonia & dysarthria (among other things). For the following three months I had nearly 70 appointments, tests or procedures; some excruciating in nature. I've certainly come by my anxiety, exhaustion & sleeplessness honestly. Alone I endured the 6 weeks between hearing over the phone that a different appointment had been canceled due to my "abnormal EMG" & waiting to follow up with the director of the ALS Clinic. I saw him again in May where he decided to stop all medical interventions for the next three months & instead recommended I get outside and walk daily, start Cymbalta, see the in house social worker, take high doses of D & see how I progress. In that time I was an exceptional patient but my fasciculations continued, my voice weakened & I aspirated. I am validated in being afraid. I would benefit immensely from the power, wisdom, experience & courage that comes from this community....BUT, as far as I can tell, I am only a guest & can not step past the port of entry. Am I correct?

When I became a member I had to check "other" because I didn't see a place for patients in the diagnostic process. Not knowing where I belong & not having the "diagnosis credentials" is extremely isolating. I had hoped to finally find a home, but today I learned I will be having repeat EMGs & follow-ups every three months for at least a year. I was widowed in '99 to cancer, so I'm sensitive to PALS & their support people not wanting to be unnecessarily bothered, just like I didn't need to hear about every cycst, lump or bumb to pop up on a friend. Currently I am carrying for 4 little ones with fragile health conditions & disabilities so I can appreciate PALS/SALS time & tolerance thresholds; but darn it, I could use some support myself. I have had, or am having, appointments/2nd opinions coast to coast and outside the US, so I'd like to know what others are doing, what's out there & so on. I'm grateful to anyone that can point me towards others waiting to pass thru purgatory, if such a forum, Facebook group, thread or overlooked stickie exists. Thank you emeansly for your time, consideration & care. Best wishes to all.

 

[Nikki J]

Hi
I am really sorry for all you have gone through. Being truly in diagnostic limbo ( as it seems you are unlike some who have been cleared but do not believe it) is horrible indeed and there are members here who lingered in that state for a while.

I wish I knew where to point you for groups. I do think a group for those in true limbo would be great. Maybe start a facebook group and post it here? There are several people I know who lurk and seem to be in your shoes

We have had to draw a line somewhere to keep the other parts of the forum for PALS/ CALS. Diagnosis seems like the obvious dividing point. A fair number of members do read here though so if your story resonates with them they will reply.

Do you have a current diagnosis? What was abnormal on your EMG? Are you currently seeing a good Neuromuscular doctor? When is your next follow up

Btw we used to have a category for being in the diagnostic process but it was sorely abused by the anxious crowd who chose it when they were not at all in the process ( except in their own heads). It was meaningless which is why we removed it

 

[Jules4boys]

Thank you so much Nikki for your kind response; and great idea on starting a Facebook group... Am I allowed to curse you later ��? Ha! I can only imagine the stink shows to play out, but if I can contribute anything from navigaying this process, I have to "lean in" & say yes when & where I can, right?

During the EMG (conducted by Dr Neel @ UC Health) the information, nuances, comments were vague. I went in to have left leg & right arm tested. I ended up having back, neck & jaw included. During the testing he asked several times about any family history of MD; but I left the test thinking I was cleared & I was only being transferred to his care (from MS neurologist) because he was being helpful. Niave of me, maybe? At the time he recommend an infectious disease specialists & said if necessary he had a neuromuscular guy he'd like me to see.

It wasn't until I went to book the infectious disease doc that I learned the referral was canceled because the EMG was abnormal... He later said a lumbar puncture would be unnecessary. Other neurologist have read his notes from the EMG, but being out of their wheelhouse they didn't know what "abnormal insertional activity in the cervical region of unknown significance" meant. I still don't.

Other than dsyphagia, dysphonia, dysarthria, Nocturia, headaches/migraines, heart palpitations, Ehlers-Danlos Syndrome, Von Willembrands & Vitamin D deficiency; I have not been diagnosed. My throat atrophied on the right side of where my esophagus & trachea valve should be closing off. Everyone seems to be dumbfounded by the severity of my dsyphagia vs the usual presentation of bulbar symptoms & typical timeline of progression. In other words, yes I slur occasionally, but the rhythm/speed of my speech doesn't match where it would be with bulbar. Most my bulbar symptoms, other than the atrophy weaken with use. No one knows why my resting HR is thru the roof, but my cardiologist referred me to Mayo (which dr Neel 2nds if he doesn't have a conclusive diagnosis at the end of this 12 month period).

At the end of this month I will have a full team evaluation by Dr Peter Belafsky @ University of California Davis. He is the Medical Director of the National Foundation of Swallowing Disorders & specializes in Dysphagia. I have been seen at Dr Shetty's Health City on Grand Cayman, but my US records were inaccessible at the time of the visit so it was just more of an experience than anything. I have my second EMG of 3 extremities w/wo paraspinals 9/14/16 & my third established patient follow up 11/11/16. Par for the course? Somewhere in all of this I will have my third throat augmentation so hopefully I can start eating solids again, woohoo!

Thanks again for everything. When I get the limbo group going, I will be sure to let you know, thanks for the nudge. I only hope to have the compassion & humor you all must have to give what you give. You really make a difference, even if us limbo lunatics cant run with our "free get out of jail" cards.

 

[lgelb]

Your sx and EMG possibly can be explained by the EDS, this subtype in particular. I would suggest re-eval at an EDS center of excellence in your area, e.g. wherever Cincy Children's refers EDS kids who age out of its program.

Best,
Laurie