shelleynshaggy
Distinguished member
- Joined
- Sep 2, 2009
- Messages
- 280
- Diagnosis
- 08/2009
- Country
- US
- State
- OH
- City
- Brunswick
Let me start by saying this is more a vent then anything!
To start with - apparently Jim's SSDI was approved d/t the FTD. I didn't realize that was one of the 50 listed conditions. So now I know why his application went so fast - he has not one but 2 terminal diseases. Never thought of the FTD as terminal before this week - I was so focused on the ALS part.
I got Jim's MR from last visit. ALS is still a possibilty.
Right now we have a "certain diagnosis of UMN-form MND with FTD." He "meets the diagnosit certainty for possible ALS w/ FTD." Per the neuro at the ALS clinic he is only presenting UMN symptoms right now (no LMN/muscle atrophy.) He has bulbar, cervical and lumbosacral abnormalities consistent with a primary MND including ALS.
Now we are back on insurance company time - waiting for test approvals. The neuro has ordered a PET scan of his brain, barium swallow, more blood work (done) and still awaiting the spinal tap tentively scheduled for Dec. There still is concern for hereditary MND since Jim's maternal Grandmother had PSP (para supranuclear Palsy). I guess a big part of PSP is abnormal/limited eye movement - which he doesn't have. Both Jim's mom & uncle died in their mid-late 40s. Neuro's concern is A) grandma may not have been correctly diagnosed and B) both siblings died before any sx may have appeared.
I am going to see about getting spinal tap moved up - seeing as how I am off work during the week now and I really would like all the results when we go back in December.
I know many have waited years for their diagnosis so I am greatful for his team of drs. It has only been 3 months - feels like forever!
At least they plan to have a "complete team" workup in December including visits to both neuros, Occupational, Physical & speech Therapist, nutritionist and a social worker. The ALS clinic is working on coordinating all of these so we can have a one-stop-shop.
Sorry to ramble - Just needed to get it out. Much of this is above and beyond what my family and friends understand or seem to want to hear!
I'll step off the soap box now.
To start with - apparently Jim's SSDI was approved d/t the FTD. I didn't realize that was one of the 50 listed conditions. So now I know why his application went so fast - he has not one but 2 terminal diseases. Never thought of the FTD as terminal before this week - I was so focused on the ALS part.
I got Jim's MR from last visit. ALS is still a possibilty.
Right now we have a "certain diagnosis of UMN-form MND with FTD." He "meets the diagnosit certainty for possible ALS w/ FTD." Per the neuro at the ALS clinic he is only presenting UMN symptoms right now (no LMN/muscle atrophy.) He has bulbar, cervical and lumbosacral abnormalities consistent with a primary MND including ALS.
Now we are back on insurance company time - waiting for test approvals. The neuro has ordered a PET scan of his brain, barium swallow, more blood work (done) and still awaiting the spinal tap tentively scheduled for Dec. There still is concern for hereditary MND since Jim's maternal Grandmother had PSP (para supranuclear Palsy). I guess a big part of PSP is abnormal/limited eye movement - which he doesn't have. Both Jim's mom & uncle died in their mid-late 40s. Neuro's concern is A) grandma may not have been correctly diagnosed and B) both siblings died before any sx may have appeared.
I am going to see about getting spinal tap moved up - seeing as how I am off work during the week now and I really would like all the results when we go back in December.
I know many have waited years for their diagnosis so I am greatful for his team of drs. It has only been 3 months - feels like forever!
At least they plan to have a "complete team" workup in December including visits to both neuros, Occupational, Physical & speech Therapist, nutritionist and a social worker. The ALS clinic is working on coordinating all of these so we can have a one-stop-shop.
Sorry to ramble - Just needed to get it out. Much of this is above and beyond what my family and friends understand or seem to want to hear!
I'll step off the soap box now.