Having trouble posting this?
Had another appt. with specialist. Seems like me vs. them.
Does the following seem correct to those who know or have been thru this:
Was told:
-Sensory involvement is not uncommon in ALS.
-Weight gain not uncommon. Will lose weight when I can no longer swallow (I am having no difficulty with this)
-This is ALS until proven otherwise. This seems to go against normal procedures of ALS diagnosis
Just a word of advice - NEVER give a new specialist a time line as per your posting here above - biggest mistake all patients make when they see a new Dr is they pour out all the information from what previous drs have or haven't said - this is just wasting your time and money and quite frankly making this Drs job so very easy. When you see your new Dr - yes they always ask for history - only disclose the most important information, if applicable to you, such as cancers, heart disease - and symptoms that are bothering you in the present. Let them then use their expertise that they are supposed to have and work for their money to find your diagnosis.
This way you are guaranteed a diagnosis.
Sensory symptoms are not part of ALS and weight gain doesn't happen either.
On a specific note: has anyone heard of someone gaining weight with ALS? I've gained over 30lbs in the 2 1/2 years since the Dr. told me she thought I had ALS. Cant explain it. I've been told this is almost impossible.
Hi Trish,
Thanks for the response.
I agree there is something going on in the neck and spine. Have chronic neck pain and odd sensations in c-spine what feels like what we called in football a "Stinger". The MRI's show degenerative disks but Neurologists ans Neurosurgeons see no specific inpingement in specific nerves. Wondering if there could be something that would not show up on MRI that may be effecting nerves like infection.
None of DR.'s I've seen have looked at entire medical history & read my detailed notes. They just cut me off about 5 miniutes in and do tests they are interested in. Been going on for years. Driving me (and by extension family) crazy.
Thinking of going to a Medicine Man or Witch Doctor. They could'nt be less helpful than who I've seen so far
Thanks for responding
Sounds like its stemming from your neck with other unrelated issues..
Does a neurologist respond on this forum?