I had plasma exchange last year. My procedure was preformed on an outpatient basis at the hospital - two treatments a week for six weeks. The way they did mine was through the viens in my arms. The needles were rather big but they gave me a numbing lotion to put on my arms before I left home so that by the time they were ready to insert the needles it didn't hurt too much.

They took blood from one arm, ran it through the machine and the blood was reinserted in my other arm. The machine was beside me so I did not see what was going on and they placed a couple of very warm blankets on me to keep me warm and help the blood flood easier. All in all the procedure wasn't too bad. It lasted about 45 minutes and the only thing I felt afterward was that I was very weak the rest of the day.

It did not help me at all, a total waste of time and money. It was a last resort try because five IVIG treatments also did nothing to help me. I guess the reason is because I have MG and SPS no one knows what will help SPS because it is so rare.

Good luck with your results.

Becky
Southern Bell

If you are going to the Mayo in Roschester Mn. there are people on line who rent out rooms for a very nominal cost. I am not sure about this in other states, like Jacksonville Fl. This is what I did, as I could not afford the week long stay I had for testing. Mayo is a wonderful facility, if anyone can help you they can. I wish you all the best. Look on line for Lodging for patients at Mayo clinic. Ginnie

I had the first PLEX treatment on Friday and got out of the hospital over the weekend. I still have a lot of back pain, but the stiffness is much better as I'm able to walk now. It was starting to come back today, but I had the second treatment, so hopefully it will last as they do more treatments.

I was able to keep the BiPAP test last night. That was probably the first good nights sleep I can remember having, so I'm hoping that will be at least partially helpful--its another week until my followup, though. My ENT wants to reduce my turbinates as he thinks that it'll help the BiPAP work better and help with breathing in general--has anyone had this procedure done? I'm a little afraid of it since reading stuff on Empty Nose Syndrome, but I've also read that that's a thing of the past and they've learned how to do it better. I'm having a lot of trouble breathing and I'm not sure if its an autoimmune thing or just a coincidence. I'm sure the MG isn't helping through.

I noticed someone mentioned that they had the PLEX line placed in their neck. At least in Maryland, there are two different departments who can place the line. Interventional Radiology will put it in the chest and this works much better. The other department (can't remember which one) will put a pick line in either the neck or groin, but you can't go home with it and it is supposedly very uncomfortable. I was told, if possible, to always have it done through interventional radiology.

I'm planning, at some point, to go out there, if they can't get this under control. The new specialist that my neuro wants to send me to is a spinal injury specialist who sees a lot of spastic patients. He's reviewing my file to determine whether he thinks he can help me before setting up an appointment. If he'll see me, I'll put off the appointment in Rochester. If not, I'll have to figure out what to do. My neuro told me her goal is not just to treat the disease (as she could put me on high enough doses of benzos to do that), but to help keep me a functioning member of society.

She said he works with Balcofen pumps and other devices that she doesn't deal with as often as an MG specialist, so I'm hopeful that there are things available she hasn't tried yet.

I'm sorry to hear it didn't help. I've been doing the IVIG every month, but wondering whether it help. I think I get MG benefits from it, but its hard to tell with the SPS being so bad. I do get benefits from the PLEX for SPS, but they're short lived and it starts to come back after about a month. My neuro is considering leaving the line in and doing a maintenance treatment every few weeks, but then there is the issue of infections to worry about. Unfortunately, the veins in my arms won't support doing it without a central line.

I think that you are right about the IVIG treatment helping your MG symptoms more than the SPS symptoms. I'm sorry your viens can't handle the needles, I'm so thankful that I have very good viens because when they told me the alternate was placing a line in my neck I was ready to run for the doors. I would not be able to handle having a needle inserted in my neck and having to leave it there for any amount of time. And like you said the possibility of infection was a big issue. But I was also told that if the treatment worked, my viens may not be able to hold up and inserting the line would have to be done.

I hope you find a solution that works for you and that the PLEX treatment will give more relief than a few weeks. Also I do believe that getting the sleeping issue resolved will help tremendously. I know that if I don't rest I simply can't function. I hate loosing part of my day having to take a nap but between the drugs and SPS muscle stiffness I don't have a choice.

As usually - good luck.

Becky
Southern Bell

Back I hospital. Went for PLEX then had urinary problems. ER admitted me to acute ward but didn't tell neuro team. They used foley and rescheduled PLEX for thursday. MG & SPS symptoms deteriorated., but they wanted to discharge me.

I told them not until neuro team sees me. Plus neuro back in town today. They were supposed to have me on bipap last night to see if it helped neuro symptoms, but doc up here canceled it when he thought I was going home. Neighbour said I kept him up all night snoring/choking. Not sure if I'm going home today or neuro team will keep me. Would like to see if bipap helps walking.

I am so sorry you are having such a terrible hospital and PLEX experience. I hope you get to see the neuro team soon and set some relief. Try to hang in there.
kathie

It is so hard for me to hear when someone so sick can't get logical and responsive care in a hospital. Usually, they consult with the neuro on call. And sometimes pulmonologists have a sleep specialty and can help you. Do you have a pulmy yet?

I hope they will take care of the apnea issue right away, fully evaluate it and get you the appropriate type of care for it. One thing I would ask is whether or not you are getting enough oxygen while you sleep. Have they checked your overnight oximetry? Sometimes a Bi-Pap isn't enough and some people do need oxygen too.

I'm sorry you are going through so much. You sound so brave but I know how scary all of this can be. Well, not the SPS but the MG.


Annie

I'm back home now. My doctor was swamped catching up on VA duties after her conference so she sent either the senior resident or attending, I don't remember which he said. He seemed good, though. He expected me to be much weaker and said that I walked, well. Then when I looked at him like he was from mars as I took my 3 inch step, he corrected himself and said I was walked better than the Parkinson's patients he works with every day, as they are unable to get their feet off the floor at all.

He concluded that except for my eyes, the MG is under control and the main problem now is SPS. That wasn't really news to me since that what led me to research conditions other than MG in the first place.

Anyway, he conceded that there was nothing more they could do for me as an inpatient. Its unfortunate I couldn't see if a good night's sleep would help the SPS, but they couldn't justify keeping me for BiPAP and I'm already scheduled to get more PLEX outpatient.

Next week I go back for PLEX, urology, BiPaP followup, and the consult with the spasticity expert. Of course they all work on different days and I live 75 miles away

Hopefully things are uphill from here. I was hoping they'd try stronger muscle relaxants or something in the meantime, plus get the BiPAP going early to test and see if it helps, but it doesn't look like they want to do that. My neighbor told his nurse they put him next to a jet engine when he thought I was asleep, so that can't be healthy. Once I'm on BiPAP and whatever the spasticity doc wants me to do, I think things should start to improve, though.