Missed you all..my update
 

I've been running around getting diagnoses. My motor neuopathy is now being diagnoses as Motor Neuron Disease, possible in Sept to be termed Progressive Motor Atrophy. All very bad news, but I've had some time to come to terms with it. My progression is not rapid, thankfully.

I have one last test, a nerve biopsy looking for inflamations. I started to show signs of lupus..swollen finger joint, pain in shoulders, raynaud's, hypercoagulation. If I am lucky, it will show in the biopsy and I will be treatable. But I am realistic, it is a long shot.

I learned that they cannot try IVIG due to the coagulation problems, it would probably kill me. I have to wait for the blood workup results.

I am going to an ALS clinic, they have so much to offer and the husband need more support than I do. I am on ritulek and have alot of preparing to do, but also I want to live my life not focusing on the future, not spending my days waiting to the other shoe to drop.

I am very religious and do not receive this as incurable, as I believe that by His stripes we are healed. I believe in supernatural healing. This above all else is what helps me.

I don't know much of your history, but have they checked you for Sjogren's? Do you have dry mouth or eyes? Sjogren's can present with joint pain, raynauds, fatigue, etc. Even hypercoagulation can be associated with Sjogren's. Have they run blood tests...ANA & others?

Speaking of hypercoagulation, why do they say IVIG would kill you? I have antiphospholipid syndrome (so very much hypercoagulated) and received IVIG for years. What are saying is the root of the hypercoagulation? IVIG can be helpful with autoimmune neuropathies.

Hopefully you'll get more answers and find a suitable treatment. If your problems are autoimmune based, then there are a few new treatments out there (Rituxan, for one).

Sending some positive energy your way.

I am sorry to learn you are still struggling.

But your attitude is admirable and you have spunk, and IMO that is at least 1/2 the battle.

We'll all be rooting for you thru this. Please keep us all up to date too. You're always welcome to come and just vent if need be!

Hello,

I have been tested for everything, had many tests repeated today including another ana panel and all those anti ro, hu, ri antibodies. I do have dry mouth and eyes, seriouly dry eyes treated for years.. if you could refresh me on the test for ss I'll look at my test results.

My problem with IVIG: IVIG has proteins that increase coagulation. I had every deep vein in my left leg from ankle to thigh clot up last nov. Left me on bedrest which of course did nothing to help my strength tests. But if they gave me anything that would increase coag, I could stroke out or have a heart attack or get venous gangrene in my left leg. Maybe if they get to the cause, they can fix the clotting and I can get a trial of IVIG.

I will ask about SS when I hit the clinic. I read about it, but was not sure if it attacked motor axons.

Thank for the suggestion, it is worth looking into.:hug:

Thanks mrsD. I am still taking the supplements, adjusted to the coumadin. Dropped lipolic acid and co Q10 as they interfer with the coumadin, but still on ACL, and the rest. Not feeling fatigued at all.

Kiss the kitty for me.

Which kittie? We have a new kitten... handsome Houdini!

Check my profile pic and some of the album pics...he is adorable and loveable too.

Oreo is doing well so far. In fact we are questioning the diagnosis now. We appreciate her every day, and spoil her with food and all the treats she loves, esp whipped cream! LOL
(this was ordered by the Vet to keep her from losing weight, so it is medically necessary "spoiling") ;)

The test for Sjogren's is SSA & SSB. Keep in mind, about 40% of people with Sjogren's are sero-negative. The best diagnostic tool for Sjogren's is lip biopsy.

Are they treating the hypercoagulation with blood thinners? The clotting factor with IVIG isn't very high risk...but there is a small risk, so I understand the caution since they don't know what is causing your clots. There are ways to properly use a treatment like IVIG with these types of conditions. I have had 3 strokes and many TIA's and was still able to get IVIG. But of course I'm (and was at the time) on lifelong blood thinners, which makes a difference. I hope they find something for you. Like you said, maybe once they identify the clotting issue, they can address it and try IVIG.

Are you talking about a sural nerve biopsy or skin biopsy?

You have a good positive attitude!!!

JB63, I will be praying for you, I also believe in the Lord Jesus Christ, and like Gods word says, by his stripes we are healed, nothing is impossible with our Lord! Also like others here are saying try to learn as much as you can about IVIG it can really help so many with these neurological problems, I know it's not for everyone, but maybe it can help your symptoms, ask the Lord to give you the right Doctors and right treatment he will surely help you, and all of these kind knowledgeable people are so helpful too! Blessings, Jan

Thanks for the info on the tests. I have pages of tests and those tests were never run. I will ask her when I call her with the coag studies next monday. I have been treated for severe dry eyes and have had dry mouth problems for years. I did not think SS could cause axonal nerve death that results in flaccid paralysis.

Sural nerve biopsy. She's also doing a muscle biopsy too but expects to find chronic changes only on that one. I am on coumadin, but will go back to lovenex (sp?) injections to have the biopsy. I wanted IVIG on the remote chance that I had Multifocal Motor Neuopathy, but the doc said my EMG and NCV tests were not diagnotic to MMN and to just ttreat me at this time was not safe.

MrsD, I'm going live like Oreo.....treat myself with more kindness. My Jakie is a huge black cat who thinks he is a big baby. Such a lovie, gives me kitty kisses, rolls over, grabs me to pet him. I sing to him. He's a big guy, all muscle about 15 pounds. He brings me so much joy.

You might also look to see if they ran an aCL (anticardiolipins) to see if you have APS (antiphospholipid syndrome). It's an autoimmune clotting disorder that could explain your hypercoagulated state.

I don't think there is anything that Sjogren's doesn't attack. I have ganglionitis/ganglioneuropathy from Sjogren's as well as numerous other areas & organs that have been effected. Sjogren's can be far more complex then many (even doctors) realize.

Maybe they will reconsider the IVIG after seeing the results of your nerve/muscle biopsy.

Best of luck with the biopsies. Please keep us posted.

I did not have an aCL done either. Will dicuss with her after I see hemo doc. Thanks for giving me this info. It really is helpful to me.:D

I really hope and pray for a good outcome for you. I too believe in spiritual healing and the power of love and positive thinking on the body. We must never loose faith. As hard and as difficult as it is to cope and live with what affliction we have, we must always hope for the better.

en bloc
 

The aCL's were negative, but my hemo repeated them. The conclusion was "The presence of a Lupus inhibitor can't be excluded and suggest repeat evaluation when effects of warfarin are not present.

My drVVT and anti beta glycoprotein1 Iga and factor VIII were elevated.

Never hurts to repeat them. aCL levels can be strange....sometimes pos., sometimes neg (even after patients diagnosed with APS). In fact, for a diagnosis of APS, you need 2 positive aCL levels at least 6 weeks apart...plus a thrombotic event (which you already have). Being that you have other factors, it's good that he's checking them again.