pulmonologist with neuromuscular disease emphasis

[Guest guest]

Like many of you, I share a long list of diagnoses and unusual presentations

which make it next to impossible to get sufficient medical care without

succumbing to the side effects of one of my “disease processesâ€. Lately the

worry seems to relate to my continued progression of neuromuscular related

breathing problems. I have scoured the pulmonary clinics of our local medical

hospitals looking for docs with special interest in these areas. Lately it seems

that mostly it is the ped pulmonary’s who have interest but the interest is

with patients with muscular dystrophy, cystic fibrosis and sometimes ALS. I have

none of these.

I have been seeing traditional pulmonologists for years at university hospital

clinics and in private practice whose focus is on asthma, COPD, emphysema and

the like. Other than prescribing oxygen and running tests every 3-9 months; they

seem at a loss as to what to do. Often they want to refer me to respite or

suggest that I will need to go on a respirator as my disease progresses. 5 years

later, I’m still oxygen dependent but not much has changed. Any thoughts here

I am oxygen dependent 24/7 due to what appears to be neuromuscular progression

related or not related to my MS diagnosis. The neurologists and pulmonologists

essentially act as though my chronic shortness of breath, poor pulmonary

function tests, diaphragm paralysis and atecleastic (sp) in the lower lobes of

the lung is part of some strange neuromuscular process that is entirely

untreatable except to keep me on oxygen 24/7. Some docs note that I have a c5/c6

fusion due to a martial arts injury and discuss the MRI cervical which shows

that the fusion has moved onto the spine and may be causing problems but stray

metal artifact obscures the view so 6 years of MRIs later and no neuro or ortho

surgeon has any interest in looking further.

They constantly ask me to get another opinion or tell me I am too complicated

for their practice or they really don’t know what else can be done. So I start

anew with yet another pulmonologist who reviews the pulmonary function tests esp

the MIP/MEP tests which demonstrate that it is severe weakness or worse in the

respiratory muscles causing my illness. Then they look at the thoracic MRIs

which consistently show that I have no MS or other lesions or abnormalities in

the thoracic spine so they assume that my progressive MS is not causing my

breathing problems. The CT scans of the chest along with other testing confirm

that I don’t separately have myasthenia gravis but they show that my very

shallow breathing and inability to take a deep breath is having a very negative

outlook on my breathing long term.

I have suffered from pretty extreme chronic fatigue for 7 straight years,

starting with high fevers and virus with some thinking there was a viral

encephalopathy at the time but nothing was ever clear cut and definitive….then

came the slow diagnosis of now some 14 different autoimmune and inflammatory

diseases of one sort or another and progressive relapsing MS. I don’t have

Lyme per all traditional and alternative testing.

Is there something I’m missing in terms of pulmos who might be interested in

my case. A year ago, I got very close to an Aha moment when I was waiting in

outpatient for an MRI and saw a woman with post polio wearing a vest which

helped her breathing tremendously because it supported her poor neuromuscular

function and supported her diaphragm. Of course we didn’t talk long enough to

figure out where she got the vest and I don’t even know if that would help.

Interested in any thoughts on this.

Thanks