Sfn,autoimmune Pots,mg And/lems Diagnosis

[k&ajsmom]

Hello everyone,

I hope everyone is fairing well

Dr.Chemali has just dIagnosed me with autoimmune pots, small fiber neuropathy and says i also have either myasthenia gravis or Lambert Eaton.

I'm overwhelmed (as usual lol) but mostly terrified of the implications of cancer, especially with lems since I've been a long time smoker.=(

I'm not sure what exactly to ask you guys, but I'm really scared and was wondering if anyone could give me any info on how they differentiate the two diseases. Also does anyone have any experience with all this? I guess any info you could give NE through your knowledge or experience would be appreciated. I don't know what's causing what or if they are totally unrelated.ugh thx =)

[jaddico]

Sorry to hear about your diagnosis.Please don't be scared. That's a lot to take in. Take it one step at a time and don't panic. Finding answers to madness helps at times. As I shared with you I'm looking forward to seeing Dr Chemali in Septmember. I'm sure others will join in soon to guide you. I've found everyone here to be supportive and understanding. These conditions can make you feel like an alien and its hard for other to understand when they cannot relate. At least here at DINET, I feel like home. Best wishes. Take care.

[Guest Alex]

I hope this link may help you with some info:

http://mda.org/sites/default/files/publications/Facts_MyastheniaGravis_P-189.pdf

Has your dr suggested you try IVIG or plasma exchange? These may be avenues worth pursuing.

Hang in there!

Alex

[Natops]

Dr. Chemali somewhat dx me with Lambert Eaton last year. I tested positive for the antibody and share about 40% of the symptoms. I actually had the antibody test ran again by a different doctor and the exact results came back. I get screened for cancer every 6 months - so far negative - so doctors think my LEMS is autoimmune in nature. I am going to Mayo Clinic Rochester at the end of August for further evaluation. I hope they can find specifically what's wrong with me.

I imagine you have tested positive for some specific antibody.

[k&ajsmom]

Thanks marigold sometimes i do feel like an alien around all these well people lol but i know UT can always be worse and pray for insight in all this.

Thanks Alex for the link...initially ivig was recommended as part of the pots treatment but it sound like that may be on hold till the other component is under control. Mestonin and infusions of steroid were mentioned as the first lines of treatment for mg or lems. I received all thus info from Dr.Chemali s assistant and won't actually meet with him to discuss specifics till after the cat scans are done to rule out cancers. So i will def.be pressing him for all options. Ivig sounds .

Na,

I tested positive for achr ab, and striational antibodies.i also have a high adolase indicating muscle damage.

I very happy to hear your negative on your screenings. Good, good news! If i may ask, what did you test positive for and how did they rule out or differentiate from mg?

I hope yr future appointments are helpful. I've heard there I'd a wall i may hit with dr.c eventually and may have to look else where but for now I'm hoping for the best.

[HopeSprings]

Hope you're on your way to answers and some help! Sounds like you've found a big piece of the puzzle. Keep us posted.

[k&ajsmom]

Thx Naomi...=)

Also i forgot to mention my coq10 levels are low...is this significant of anything?

[Natops]

I tested positive for the calcium channel N-type AB (part of the Mayo Clinics paraneoplastic panel)