Stiff Person Check In

[KickingIt]

Hi Sunshine, sorry Took so long to respond.

I am having trouble finding this site in my page. Anyway I hope you had positive news at the dr.

Yes, going out to a restaurant can sure set things on tilt. Always looking for quiet places. Small restaurants. No music!

I don't even want to get together with people because I don't know when I might start having neck spasms, which leads to choking. I don't have the ability to explain to someone that I may just need to go. I tried explaining to a friend a head of time in case it happened and sure enough it did. My friend got all anxious, which of course did not help, then wanted to do good byes and such. The more I had to say the worse it made it. I know she does not understand but it becomes just easier to do it alone or with my husband. He thankfully can read my face and knows exactly what needs to happen. Unfortunately he is my hermit and so he would just as soon stay home. 😏 I was always the one who went and did things with my friends.

Did you find a good book at the library?

[Sunshine]

So glad to see you kickingIt!

I think it’s such a weird disease that it’s impossible for even friends to grasp. One friend implied I was faking it. She is no longer someone I see.

It’s so. Much easier just to be alone or hang out with our husband. I get that!

But after awhile I feel isolated and adrift. I make myself leave home everyday to see people. Like the grocery store. It helps.

The MS bulletin board helped me with ms related stuff. Am hoping this SPS board can help people like me and you.

Already, just reading your post, really was a good connection.

Your choking sounds very scary. It’s my fear. Sometimes feels like the muscle on the Adam’s apple is pushing on it.

I guess we have to train friends on do’s and donts. They know to speak quietly, no radio, no TV.

[KickingIt]

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Skipped swimming today due to chilly windy air. Before SPS , and with only just MS, would swim in this weather. Since SPS seems like I start to shiver uncontrollably. Uncomfortable and scary.

I understand the shivering, since the spasms over int myper trunk and neck shivering is almost a guarantee. I was getting cold when they do my IVIG treatments and would start shivering. I ow keep two heating pads handy, onefor front and one for back. If I can't get the shivering stopped fast enough it is a downward spiral. Thankfully by slowing down the rate this side effect has lessened.

[Sunshine]

Good idea, I will keep it in mind.

I do 25G of IVIG at a rate of 30= 7.5 hours alt week’s. How about you.

BTW, how did you find this board? Am trying to attract people like you and me

[KickingIt]

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Good idea, I will keep it in mind.

I do 25G of IVIG at a rate of 30= 7.5 hours alt week’s. How about you.

BTW, how did you find this board? Am trying to attract people like you and me

I am on 20G starting at 25 and advancing to 75 every 30 min, max 75. Takes about 4 hrs. I take it every other week also. I am going to talk to my dr about increasing it to 30G when I see her in A few weeks. They messed up a couple treatments ago and gave me more then they were suppose to and although they also gave it way too fast which caused severe side effects (aseptic meningitis) it was the first time that my chest muscles let up and I didn't have chest pain. The tightness is starting to effect my lung function so I am keen on seeing if tightness is less can I recover the damage we are seeing.

The choking is frightening. I have had spasms that have broken three bones in my feet at different times, when I started having them this past year in my throat and it affected the swallowing it made me immeadiately become fearful that if they could break bones could they cut off my breathing. My neurologist Finally figured out what was up.

You are right we need to educate our friends and family. The problem for me is although I do, until they see it actually happen it is just words and they inevitably panic. Then they continue to make a big deal about it and all I want to do is move on until the next time. They become very smothering. Again I appreciate their good intentions and I am blessed to have so many people who care about me.

I do not know which group this was posted in but someone posted about the forum. It may have been you. I am still trying t figure the sight out. I posted to replies earlier today and have no idea where they went. HAHA!! This is very much needed so thank you for starting it.

[Sunshine]

That sounds terrifying... do you have an emergency Valium suppository? I know a guy who does, but his wife is a nurse, so maybe that’s why doc allowed it? Maybe I will ask again.

Glad you like this site. Maybe give it a plug on your other site?

Re rate. I had bad side effects with higher rate. Even at 35 got bad spasms. And higher rate spiked a fever and was sent to ER.

I like your idea of asking for higher amount of globulin. I use Gammaguard. My next time is Wednesday.

[Sunshine]

BTW here is the FB link to SPS. It is not anonymous, but another place for good support
https://www.facebook.com/groups/spsaonline/

[Sunshine]

Tomorrow is my 7-8 hour IVIG, so I will be offline most of the day

[Sunshine]

Another successful infusion with no side effects. So weird to spend so much time in a medical facility filled with sick
People.

[Sunshine]

Today was a good day re SPS. Much less pain, and less stiffening. Maybe the infusion helped. Or doing very little other than swim and self care.