Frustrated!

[Bella77]

Hi, my husband is in the process of being diagnosed. The first visit was in July to a Dr. that specializes in ALS, he examined him and sent him for a emg test that was done in August. Made an appointment to hear the results, and can't getr in til the 27th of this month, so we're waiting 6 wks after the test. In the mean time he is getting worst as far as his speech goes, it's really bad now nasally and slurred so much alot of people can't understand him.My daughter got mad and called the neuo today and actually got his nurse in person and she says he needs swallow test asap, after my daughter told her the problems we've had . She said she's going to try to get a test for him this week so we have the results the 27th. I just got a phone call and it was radiology from Henry Ford Hospital, and they said to come down the 16th for the swallow test, GREAT!

We are living in limbo, it takes so long between appointments. She said he has bulbar onset neuron disease, and motor neuron disease. She said they sent the report to his primary, so I called down there, got a woman I used to groom her dog for about ten years so she knew me and looked it up and said they have nothiing from Henry Ford. She said call them and tell them to put it attention Linda and she will get it for me. Called his nurse and naturally got her voice mail and had to leave a message.

Anyway I sit here every few hours and read these post on this site, trying to wrap my head around all this. It's very frustrating, but then you guys know that already don't you.

 

[dragonlibra]

Know what you mean about length of time they keep you waiting in limbo medical hell. This has been my lost summer waiting on doc appts.

I'm not yet where your husband is symptom wise. Still hell to wait 7 weeks for an ASAP appt while symptoms worsen, in pain, worries mounting.

My best to you and your husband.

 

[kmendsley]

It has been two years for me...and I am still in limbo land. Well, I was diagnosed and then it was taken away and I was put back to limbo land...hate it so much. The best thing to do is just try to do things to pass the time...but also call if there are any dramatic changes..ie..your husband needing that swallow test....the more you bug...the better it is sometimes...as my grandmother used to say '"The squeaky wheel gets the grease" or the person who raises issues will get the attention they need to get what they need. I had to become quite a different person with the medical group because unless you raise hell, they don't think it matters that much to you or to them.

Good luck to you and don't be afraid to call again if there are any more changes. Sorry for you and your family...please use this website as a reference to vent, questions,...etc.

 

[ladyrider]

Sorry for your frustration but how well I know it. I was told by the first neurologist that I had had a stroke. I guess the contributing foot drop was the key factor in that diagnosis. But that diagnosis I could do except I knew it wasn't right and just had to get to the right doctor. However that took some doing! Two trips to the ER with severe anxiety prompted my EMG and I got results within 20 min. not what I wanted to hear but it did give me peace to finally get a diagnosis. Prayers to you and I hope you get your answers soon.

 

[Alyoop]

You are doing the right thing trying to track down the results. Waiting along time is terrible and unnecessary. Keep pushing. The waiting game is terrible. So sorry you are in this position
Aly

 

[Ms. Pie]

Something similar happened to me and I couldn't get anyone to call me back for weeks. My husband finally got hold of a person rather than an answering machine and raised so much cane that his coworkers kept checking in his office to make sure he was alright. The dr. called me that
Sunday with the results. Her assistant called me right away after my husband's call. Make some loud noise! Works wonders!

 

[Bella77]

Thanks for your input, it helps. We do keep busy, he's real busy doing his thing. The neuros secretary calleda t 6:30 tonite to tell me she had faxed his emg report today and checked to make sure it got there, and if I need anything to call her. The radiologist called today and made an appointment 2 days from now for his swallow test so we have the results when we see the neuro on the 27th. 2 weeks from now. We really do go on with our life and keep busy.

Thanks anyway for listening.

 

[susanf]

If he is having a barium swallow study the SLP should see immediately if he is aspirating any food or liquid. She should recommend a diet right after the study is complete and send a report to the Doctor after.

 

[notme]

Certainly with serious Bulbar issues going on like this, they can't just continue to put you on "hold"--the risks as susan said are too great. Is there any way you can physically go and pick up records/reports yourselves?

If they have determined MND, there are potential studies he can get into that might help--and assistive technologies that can make things easier on him.

You can also contact the ALSA in your area for some guidance if needed. With bulbar issues, aspiration is a real concern. BarryG is the expert here in that area, I believe.

Hoping you can get some answers and your family will be in my prayers.

 

[Lobster]

One time I made an appointment with my regular doctor and told him, "I don't care what you tell my insurance company. I am here because I want you to call Dr. X and get me an appointment with him this week."

It worked. I sat there while he called and got me an appointment.

 

[Bella77]

I picked up the report yesterday,it's not the emg. report it's the consulte with him we had in July. Her's what he said, and I'm paraphrasing all this.

He has a 6 year history of bilateral foot drop and weakness in plantar flexors. He has hammertoes. This seems to run in his family. On top of this he has a 2 year history of dysarthria, which hs been progressive and associated with some dyshagia, as well. Upon examination he has both pathological upper and loweer motor neuron features in bulbar muscles ( brisk jaw jerk, fasciculationns in the tongue). Aditionally, he has fasciculations and some weaknes in the upper extremities where the reflexes are brisk. I suspect that he has 2 processes. He may have anaxonal form of Charcot-Marie-Tooth or other mild hereditary heuropathy. However, on top of this, he seems to have developed a bulbar onset motor neuron disease. He will have a emg and some blood tests looking for serological abnormalities, which caould cause an als like phenotype.

As I said before we're going tomorrow for the swallow test, and then the 27th for the results of all this. TO me this sounds like he doesn't sound like he has ALS. I would love to know what you people think of this report.




My daughter is the one that called them Monday and she is a bulldog about getting her way in the Health care world ( thats what she works in) I am not I'm tooooo nice. She's like her dad in that way. She pushes me when I would back off, he hasn't a clue on any of this and is not interested in pushing it. He says if he's got it he's got it and he don't need to talk about it. But I'm afraid he's going to get mad and if he does he'll blow the top off that hospital ) not literally ) Anyway what do you think about this.

 

[rose]

To me it sounds like you have a sharp neurologist who is interested in getting to the truth as to what is causing your husband's problems. This is very much in your husband's favor.

Having the needed testing for finding the cause of his bulbar symptoms is just the next step. What he wrote does not really say one way or the other if he thinks it is actually something other than bulbar onset of ALS, and he really cannot speculate until more tests are run. I think his wording is just making it clear that in his opinion your husband most likely has two separate processes going on, that are not necessarily related to each other. This is neither good or bad news, other than that you should be encouraged that the doctor is being thorough. That's always a good thing.

Do insist on a MRI specific to his brain stem, if this is not ordered in addition to a regular brain mri.

Good luck, we know how hard it is to be dealing with this.

 

[Bella77]

Thanks for giving me a opinion so fast, he has had a mri whenhis primary thought he'd had a stroke , it was clear for stroke and she had us take it with us to the neuro. It wasn't specifically for his brain stem.
There's only 2 neuros that specialize in ALS in Michigan, one at Henry Ford and on at U of M. We chose Henry Ford because I had been going down there for 4 years for my liver disease and had finally had a transplant last year, thanks to my grandaughter who donated 60% of her liver.

Thanks again

 

[rose]

Wow, your family has really been through the ringer! Congratulations on the successful liver transplant, and bless your dear granddaughter.

Ask about the coned down MRI, its important. The brain stem is such a small area, a regular head mri is just not specific enough. It would maybe not be as important if it was felt that your husband's limb problems were definitely related the his bulbar issues.