Newly Diagnosed

[hjohnson]

I was told by my neurologist two weeks ago he was changing my diagnosis from (5/2015) CIDP to ALS. He explained his reasoning; steady progression of weakness despite 8 month of IVIg therapy along with methotrexate. Reflexes in my legs not what CIDP should be.

He has referred me to U of Mississippi - Dr Duaa Jibarri. Anyone had any experience with him?

I'm kinda bummed out by all this and am wondering what the second opinion guy is going to do? It seems like I get weaker every week.

hugh

 

[Nikki J]

Sorry to hear this Hugh. I looked up the doctor and it looks like he did his fellowship in neuromuscular which is what you want. If you are really in Little rock though why not U of Arkansas? They seem to have an MDA ALS clinic What can he or they do? Confirm or refute your diagnosis of course, but hopefully offer you some resources to deal with the increasing weakness and any other associated problems. If you do not have them yet you may need afos or a power wheelchair for example. In the meantime, contact your local ALSA chapter and also the MDA to see what they can offer to help you.

 

[hjohnson]

Thanks Nikki
The Neurology Department at U of A has kind of fallen apart over the last six months. The well-known docs have fled for the West coast. My neurologist was wanting to send me to UTSoutwestern but the earliest they could see me is somewhere around June or July when we inquired in January.
I'm having shortness of breath, extreme muscle wasting in arms and now in legs. Drop foot on left side. I can't do zippers, buttons and barely scribble my name. My voice is raspy and I am now hunched over.
This has all occurred since May 2015 and seems to be progressing.
I don't think my doc wants any lengthy delays which is worrisome.
It was basically anyone I could get in to see. I was curious if anyone had experience with Dr Jibarri.

thanks again.

 

[Nikki J]

Ah I see. When is Dr Jibarri? If not really soon see if your current neuro will order pulmonary function tests ( ask for testing lying and sitting) it sounds as if you might benefit from non invasive ventilatory support (bipap) as well as mobility aids. Definitely check in with ALSA and MDA you need resources nearby. Is your current neuro going to continue to work with you too?

 

[hjohnson]

I assume so. His office is working with me.
Thanks for the suggestions.

 

[affected]

Sorry to be welcoming you here Hugh, I hope you get that second opinion soon and get bipap started if needed quickly, it will make a big difference.

 

[JimInVA]

Greetings, Hugh!

First, I'm sorry to have to be talking to you here. But with that having been said, welcome!

My wife, Darcey, was also initially diagnosed with CIDP. She had IVIG treatments for about 10 months with no indication of improvement. She was then referred to Johns Hopkins (Baltimore, MD) for a new evaluation and was re-diagnosed with ALS. It is important to know that Darcey's story is not necessarily your story. Know also that ALS is often a diagnosis of last resort... one that is given when all other diagnoses have been dismissed.

With Darcey's first visit to Johns Hopkins (JH), the neurologist immediately prescribed a BiPAP machine. Darcey had been averaging a weight loss of about 10 pounds a month and was having difficulty sleeping if she was laying too flat in the bed. She'd also fall asleep multiple times during the day and sometimes when in the middle of a conversation. The doc at JH said that she was likely having difficulties with CO2 retention and that her body was working overtime at night trying to breathe to get rid of the excess buildup... so she was burning excessive calories. And because she wasn't sleeping well (and she didn't snore) she was tired all the time. The BiPAP made a huge difference in how she felt... immediately. Whether ALS or something else, breathing well (and especially sleeping well) makes a tremendous difference in how you feel. I hope you quickly find some answers that allow you to move forward with the right treatment for whatever they find.

My best...

Jim

 

[hjohnson]

Curious, I can't lay on my back because I can't seem to get a good breath. I have lost about 60 pounds in the last two years, but I think no appetite is a cause. I too, seem not rested. I'll mention the NIV to my doc.

I keep thinking maybe this is all because I'm not eating and exercising right. I just feel out of energy. I suppose it's wishful thinking.

I had 8 months of IVIg treatments, five days every month followed by 4 days of migraines, myalgia and nausea. When my doc said no more treatments, I was actually relieved.

Sorry folks, this is really depressing and I know you all have been dealing with this disease longer than me. It just sucks. I was going to retire in a couple of years.

 

[affected]

Getting that breathing checked needs to be your priority by the sounds of things.

Don't apologise - it's actually harder in some ways to deal with in the first months. I'm sure we all remember too well the feelings of shock, 'this can't be right' and feeling it is all going to be a bad dream.

 

[hjohnson]

Thanks, I will.

 

[fionae]

I want to let you know that I am thinking of you, Hugh.
You have received some excellent advice and information
from among some of the very most knowledgeable members of
the forum.
This is such a difficult time.
I am sorry that you are going through this.
We are here, and we care.
Sincerely,
Laura.

 

[Ells]

Hello Hugh & welcome to the club to which nobody wants to belong!

Hopefully you'll get NIV very soon, which should improve your sleep and energy levels.

Ells.

 

[LifeEnthusiast]

Welcome (sadly) to the forum, Hugh. Loads of great people here.

 

[sleepy]

Welcome - there are those of us still at the starting phases and it can definitely be helpful to know that others understand where you are at. I hope you don't have to wait too long to see the next dr - waiting, in a lot of ways is worse, than knowing.

 

[swalker]

Hugh, sorry to welcome you here, but you are very welcome nonetheless.

As others have said, be sure to push for a Pulmonary Function Test (PFT) ASAP.

I was stunned with the results of my first PFT. It was the first indication I had that my breathing was affected and was well before diagnosis. Getting a baseline PFT and then periodic repeats is valuable.

My breathing is at the point where they no longer do full-up PFTs. Instead, I get a screening spirometry along with an arterial blood gas draw about every 3 months.

Having the information from the PFT will be invaluable in treating the symptoms.

Again, welcome. You are among friends here.

Steve