Plasma exchange therapy

[Traci]

I had a visit with my neuromuscular Dr. today. They are still trying to figure out where all my muscle has gone and why I am so weak

She wants me to have a muscle biopsy, to look for mitochondria disease etc.

She also wants to start me on plasma exchange therapy next week, for some of my antibodies are high. So they will be taking out the old antibodies and putting in good ones through plasma, I guess.

I guess I'm a complicated medical delimma.

Anyways has anybody heard of this? And if they have, do you think it could be a problem for people with Hr, bp, blood flow problems?

I hope not, at this point anything that will give me some energy is welcomed .

Thanks

Traci

[biatecki]

Hi Traci,

Just caught up with your latest posts..sorry to read of the MG diagnosis .... however in terms of the autonomic neuropathy I was informed by one of my autonomic specialists that the plasma exchange can be very beneficial especially if done within the first 6 months of getting symptoms. There is also a post here with info on an research article in New England Journal of Medicine.

Keep us informed of how things are going. Was Dr Stewart able to help?

Margaret

[Traci]

Thanks for the reply Margaret,

I have seen Dr. Stewart a couple of times, but presently he is on holidays until mid December.

Without him here, it's a worry, for my symptoms are increasing.

My biggest problem is I feel like I'm constricting to death, I know it sounds strange. I don't pool that much in the legs, they feel constantly cold now. It feels like all my blood flow is staying in my stomach or at times arms. Sleep has been very difficult, for the pain that I use to feel with the headaches. I am feeling in my torso. It makes me think while I am dilating in my abdomen I am also constricting in areas. My Bp hasn't been super low, but it feels like my blood isn't flowing properly. Especially on my r side. MY head feels heavy on the r side or light and normal most of the time on the l side. It's kinda scary, for I don't even know if this is normal for autonomic problems. And I am always so cold. I can't stay out of the bath tub presently. Also when I stand up from sleeping I can actually feel the flow of my blood going up my body.

I don't know, it seems like I am so intuned to the things that are happening to my body.

Sorry for the vent.

Did you go see Dr. Rangno. If you did, was he helpful?

As for the plasma exchange, I got a call from VGH today and have an appt. to talk to their Dr. about it on Monday. Hopefully it'll work and won't cause problems due to the blood flow problems I seem to be experiencing lately.

Traci

[biatecki]

Hey Traci,

I think you may be onto something good with the plasma exchange..it will be so interesting to see if it helps. I wish I had been diagnosed a lot sooner.... that, or IV IG, may have saved me a lot of suffering .

The symptoms you describe do sound weird but then we all have unique and strange symptoms..I remember most of mine were on my left side..my right side felt normal. I had lots of tingling and numbness and a feeling that my joints were all swollen up.

Yes I did go and see Dr Rangno . He basically confirmed my diagnosis ...did a short TTT and then spent 3 hours talking!! I did learn a few things from him so it was not entirely a waste of time. I`m not sure yet who I will choose to follow up with but I certainly dont need both . I`m trying to get by with just one doc as each one you see has a different opinion.......

Hope all goes well for you ,

Margaret

[Laura]

Hi Traci, good to see your post! Have you started any treatment for the myasthenia as yet? I wonder if treating the myasthenia would lessen some of the strange symptoms you've been having? I'm sorry you're having such an awful time. It's good you'll be seen on Monday. Hope you'll get some good advice. Laura