Being Referred To Multi Disciplinary Clinic

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Harbinger

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Learn about ALS
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Good afternoon everyone and greetings from Colorado, just wanted to see if anyone experienced symptoms and struggle/delay in diagnosis like I have until now.

I am presently a 37yr old male 145lbs, who's signs/symptoms of Movement Disorder began approx 2.5 years ago. Was an almost professional bodybuilder, construction business owner, and avid sport shooter. 215lbs when I was 34yrs old.

My initial presentation to clinic, 2022, was weakness in dominant hand and weakness in right leg; along with diagnosed Sleep Behavior Disorder and Over Active Bladder from the previous year. I also had Pain in back and neck from military injuries not bad enough to warrant surgery according to neurology. I had an EMG on my arm a few months later and came back 'normal', in which time I also developed a resting tremor in the weak hand. I was also diagnosed with positive Babinski left foot, negative reflex right foot, hyperreflexia lower leg bilateral (severe), but not given any idea as to WHY these existed.

Things however did not seem to progress 'quickly' at any point, just a slow degradation of my strength on one side over the first year and half. Also noticed difficulty swallowing and diagnosed with 'esophageal dysphagia' after barium study. Prescribed higher dose anti acid medication. Continued to try to exercise while my energy died off quickly, severe fatigue became a chief issue. Have not been able to do more than short walks now the past year.

After that time, approx Aug 2023, I needed emergency hip surgery on my LEFT for 'septic arthritis' (had previous hip surgeries in Navy from injury), again I am only 37... During recovery, the physical therapist at the hospital noticed my right foot wasn't picking up when I stepped, and gave me an AFO (which has been awesome). The weakness in my foot was severe at that point, had an basic EMG on leg which came back 'some abnormalities', but not enough to consider ALS then.

Oct begins and at some point in the month I begin noticing that I lose my voice while speaking for a while, not a big deal, but noticeable; as well as much more difficulty breathing, had some issues with blood pressure regulation getting up from laying and sitting (tilt positive). The time in which it took to 'wear out' was getting shorter and shorter, and by January I had completely lost my voice. I was sent for more testing (which has led to Multi Disc Clinic Finally) specifically, ENT for nose camera, and soon I will see Laryngology and breathing Dr in April 2024. I was diagnosed with Dysphagia, Spastic Dysarthria, Tongue Weakness, Tongue Fasciculations, diaphragm dysfunction (unspecified) and some other minor non related issues (hiatal hernia, gerd-known) by ENT in Mar 2024.

It is important to note because of the conjunction of these signs together was odd to the VA neurologists, and diagnosed me with nothing while I progressed for 2 years into this corpse shell I now inhabit, with extremely infrequent testing and 6 months between appointments. It has now been suggested that I am experiencing autonomic nervous system failure from an unknown illness, and I am being referred to multi disciplinary clinic (eventually...) for evaluation, this furthering in my diagnoses was provided from an outside provider, not VA, a 'movement disorder' specialist. He said I demonstrate signs of both Parkinson's disease and Autonomic Nervous System Failure. I have been told it is possible I could have both ALS and PD; or be one of the youngest people in history with MSA. I have been fighting the VA for years to improve my treatment and sought multi disc clinic over a year ago when I realized I was only getting worse...

In the past week I have had 'fasciculations' in my abdominal area that have lasted for several days now and no sign of stopping, very noticeable when I am sitting and relaxed. My tongue looks like it has been ransacked (odd looking, much smaller, sides look caved in etc), and my speaking has gotten almost unintelligible despite my voice practice and physical therapy has done nothing (been working with neuro phys therapy for over a year).

Just wanted to see if anyone else ever experienced similar things. The resting tremor really had me down the path of 'hoping' this was all related to Parkinson's Disease as I had severe, significant, and prolonged exposure to chemicals that could cause its development. However, with the recent diagnosis from ENT and the referral out of standard Neurology to Multi Disciplinary care, as well as the description of my 'autonomic nervous system failure' has me concerned this is actually Bulbar Onset ALS.

I will likely not actually find out for months until I am in far worse condition, but if anyone has better suggestions I am certainly up for them!
 
I am sorry for what you are going through. Not all VAMCs are created equal. From your description, you certainly qualify for outside care to see this through. Not sure if you are eligible for PVA support in this, but some of the vets here will know.

I don't think you have both ALS and PD. And I don't think you have an autonomic disorder + neuromuscular disorder. Those are long odds.

If you want to post the deidentified EMG and any imaging/test results, that would be helpful to our ability to say that this doesn't resemble ALS. The PFTs that I expect you will be getting will be informative as well. If you mean "REM sleep behavior disorder," that is certainly associated with Parkinson's; MSA is a form of parkinsonism.

On the whole, as I'm sure you've been told, what you've described accords with cerebellar MSA, abbreviated as MSA-C, which has been documented in patients in their low 30's, though the mean age of dx is in the mid-50's. For me, from what you've said, that's the most likely dx.

I would suggest expediting a clinical dx and ongoing care from an appropriate clinic, since if this is MSA, progression can be slowed though not stopped, by medication and there are other forms of therapy that can help, including a CPAP (or, preferably BiPAP) machine. The MSA Coalition web site has a lot of good info.
 
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