Still more ?s then answers

[shelleynshaggy]

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.

[halfin]

Hi Shelley - I am glad to hear that you are making some forward progress with Jim's diagnosis and testing. I know the tests drag on and are time consuming, there are so many things they look for. But every piece of information will help in the end. For me it gives a sense of control to know exactly where I am in all the different things they measure. The ALS team meeting in December will hopefully be helpful and reassuring for you. They say that this kind of team approach does more to extend life and health of ALS patients than just about anything. The way they usually work these appointments is that you stay in one room while each specialist visits in turn. By the end you will hopefully feel that you are in good hands and have a support team you can rely on. Good luck, I know you have special challenges with your husband's dual diagnosis but I hope the next few weeks bring you some positive news.

[indigosd]

Shelly, go ahead and tell it like it is! I read your post and I am also confused and I feel your frustration. Why the barium swallow and the PET SCAN? WORD OF ADVICE ABOUT THE LP, MAKE SURE that he is given something for anxiety prior to the procedure. He will need to be flat for 30 min after and then for 24 hours NO STRAINING OR LIFTING to prevent a leak. I gave DH Valium and Motrin prior to the LP. He was very anxious! He satyed flat in bed for 12 hours after i got him home. btw the LP was totally normal. My girlfriend had a LP and had to go in three times afterwards to have a blood patch done-miserable situation.