Cherry

Cherry · 10-31-2009, 09:48 AM

Although my husband was told he had P.B.P./A.L.S a few weeks ago, the neurologist said it wasn't necessary for him to have a muscle biopsy. He had the test where he had needles inserted into his muscles and was told he hadn't any muscle disease. At that time we didn't think he had anything wrong with his muscles anyway and he'd been referred to the neuro by the ear, nose and throat dept. What I'd like to ask is has anyone been diagnosed with this without a muscle biopsy? Hubby was told as he had six out of the seven symptoms to determine the condition it didn't have to be done. I've looked at Polymyositis as a possibility but don't know if I'm fooling myself due to desperation. I read on an internet site that Polymyositis is often present with Cancer and Raynard's disease, both of which my husband has had.

Thanks in anticipation, Cherry.

Danijela · 10-31-2009, 09:56 AM

My partner was diagnosed without muscle biopsy. He had emg tests and blood tests plus MRI scan and physical exam. He met El Escorial criteria for mnd diagnosis. D

BarryG · 10-31-2009, 10:38 AM

No muscle biopsy here, just lots of blood work, EMGs, MRIs, arm and leg wrestling and bonking with the round thingy (reflex testing) by lots of doctors.

GlenBrittle · 10-31-2009, 10:53 AM

No biopsy done. But everything else .

Glen

rose · 10-31-2009, 11:02 AM

No muscle biopsy. I think they only will do this if symptoms (from a specialist's point of view) could indicate this would be of diagnostic use.

Just as a note of interest, it was an ENT (who specializes in the voice) who was instrumental in getting me in the right direction for diagnosis. And, same as Barry, lots of other tests by lots of doctors. An EMG of my vocal cords was positive for a motor neuron cause, EMG of limbs was not. After limb symptoms became more pronounced, a repeat EMG still did not turn anything up, but single fiber EMG performed during same appointment did.

I too have Raynauds, but I think a lot of people do. Before diagnosis, I was treated for over a year with prednisone and immunosuppressants. This was sufficient for them to rule out an inflammatory cause.

Did your husband have MRI of just his brain stem? If not, that could be a test worth requesting. There was a forum member who's husband was diagnosed with PBP without EMG confirmation, the neuro pooh-poohed the need for the brain stem MRI, and it turned out later that he did NOT have progressive bulbar palsy, but rather oral cancer, and it could have been treated so much more quickly if more thorough testing had been done in the first place. ( a lesson for everyone to get second and third opinions!)

Zaphoon · 10-31-2009, 11:52 AM

No muscle biopsy or spinal tap here, either but then, I still think i have chicken pox.

Cherry · 10-31-2009, 11:53 AM

Thanks all. Yes my hubby had an M.R.I of his brain stem. He's actually, only seen one neurologist, and the consultant at E.N.T. PLUS G.P. of course.He's had blood tests, but no E.M.G. of vocal cords just limbs.
Seems like I'm barking up the wrong tree.
Best wishes, Cherry.

Cherry · 10-31-2009, 12:17 PM

The reason I thought it could be polymyositis was because I'd read of a Mr. Terry Bott (some of you might have heard of him) who was diagnosed with M.N.D. by a doc in London. As it was too far for him to keep traveling there from Derby he went to a hospital in Sheffield Yorkshire. He saw Professor Pam Shaw, who, after he had a muscle biopsy, told him he had Polymyositis. One can hope though.

Keep smiling, Cherry.

Micheline_h · 10-31-2009, 12:19 PM

i had all the above, the muscle biopsy was the last test for me.