Checking in after Cleveland Clinic visit

[Jaha]

I had some testing while at CC, a MRI of the head, 2 EMG's and some vascular studies. The second day was a bit to much for me, from 7:45am to 5pm with two EMG's in one day. If anyone ever tries to schedule you two EMG's in the same day, just say no, they hurt like he**. I passed the vascular testing and after I was finished with the electrocution tests the Neurologist came in to talk with me about the tests and MRI. I was so exhausted by that time, that I was not understanding what she had to say. I read the report when I got home and am a bit puzzled. I put a call into her and she will call me back. I wondered if anybody might know what some of this means, I tried to look it up and still don't understand it. It reads, several, scattered T2 & Flair hyperintensities in the periventricular & subcortical white extends toward the corpus callous. Demyelination Disease vs. chronic microvascular ischemic changes are the main differential considerations. If anyone has had anything like this I would like to know what treatment you have had or what you might have went thru to get it under control. Thank you for any info on these dx's:confused1:.

[Debbie C]

Hi Jana,sorry you had a rough time at CC. I can't help you on the what the report means.Why can't they write it so the average person can understand it. I don't even know what a EMG is ?? And what a long day That pisses me off also when I go to the dr and end up leaving wishing I would have asked or said something else. When she calls you back let us know what is going on ! Hope you start feeling better

[drz]

What were they looking for with all of these tests?

All those tests should give you a pretty good pix of what Wegs has done to your body.

Are you having some unusual neurological symptoms?

[Jaha]

I am having some, pain, burning, weakness, and clumsiness in limbs, hands and feet. I am also having headaches, not migraine like. She also on exam noticed eyelid drupping on Rt side. That is why she ordered the testing. Deb, the EMG's are tests that measure reflexes and nerve responses. They first shock you in different places in arms,hands, fingers, legs, feet, toes and neck. They then put needles in the areas of the nerves in those places and send electrical shocks to stimulate the nerve reaction to ck for damage. It really isn't a pleasant test.

[drz]

I am having some, pain, burning, weakness, and clumsiness in limbs, hands and feet. I am also having headaches, not migraine like. She also on exam noticed eyelid drupping on Rt side. That is why she ordered the testing. Deb, the EMG's are tests that measure reflexes and nerve responses. They first shock you in different places in arms,hands, fingers, legs, feet, toes and neck. They then put needles in the areas of the nerves in those places and send electrical shocks to stimulate the nerve reaction to ck for damage. It really isn't a pleasant test.

I had this done twice to check for degree of nerve loss in my feet or severity of my neuropathy. The last tests they did each time were very painful and the doctor said that is why we do them last cause if we did them first no one would ever finish the tests. The procedure is sort of like acupuncture only it is painful like the torture where they insert bamboo slivers under your skin. They turn up the current to test the connections and effectiveness of various nerves and get a reading when the nerves spasm which tells you how good that nerve conducts electricity. The one good side effect is that it often tends to decrease neuropathy temporarily. I learned my motor nerves were more impaired than my sensory nerves which is why I was stumbling a lot until I learned to walk like a penguin or like you do with swim fins on.

EMG are very useful tests but like many medical procedures not much fun and rather unpleasant but being a Weggie usually means we have a high tolerance to such unpleasantness so we tend to be "good patients".

[annekat]

It sounds like a test I would try to avoid. I'm sorry you had to go through this, Jana and drz.

[Psyborg]

Sorry for your bad day Jaha. I could only google those, but after googling Wegs back in the day I'm reluctant to do so. :) I hope you are able to rest up.

[Jaha]

I forgot to tell you guys, that to top it off, it was my husband and I's 31st anniversary that day. My husband and I had celebrated it the night before, with a nice dinner. I think us Weggies are just a little off in the head sometimes, to schedule some torture tests on a special day.:drool:

[Mas78]

I still have vivid memories of my EMG from almost 15 years ago. almost kicked the lady when she shocked me on the back side of the leg behind the knee. first time I didn't do anything so she put the gel on my leg and man did that work. I don't remember the needles being to horrible except for the muscle for my thumb in my hand.
I had several tests done at that time that I wish they didn't feel they needed to do, as most of them came back normal but I was in pretty bad shape so to get a good picture of what was going on I went along with almost all of them.

Jaha, when you get to feeling better you can look back at all these tests and just think about how bad they were. But then you'll realize they weren't really THAT bad. or at least that has been my experience.
good luck on getting to feel better.

[annekat]

Happy Anniversary to you and your husband, Jana! :thumbsup:

[Pete]

Congratulations to you and your hubby, Jana. Hope you have many more, and that they're healthy!

[Debbie C]

OUCH !!! That's sounds horrible to be shocked and stabbed. And on your anniversary ! Did the dr. ever call you back to explain things ?

[renidrag]

Happy Anniversary Jana. Sorry for the test pain.

[Tr1957]

I'm going to my 2nd EMG test in the last 6 mos my Neuro wants to see any changes ( for the better or worse) and to see if they can pinpoint the soul of my knee and foot pain bi- laterally and not due to neuropathy


Sent from my iPhone using Tapatalk

[Jaha]

All the best to you Tr1957, hopefully it won't be as intense this time. I heard back from the Neurologist, about what kind of biopsy she would take and it would be of the skin. She said that she would be looking for small fiber neuropathy in my feet. The office called me on Friday to setup some cervical spine x-rays before I have my RTX infusion on the 29th. I ask if I would then have an apt with the Neurologist that day and they said we would set that up later. I guess I will just be patient and wait to see what all of it adds up to.

[Debbie C]

Sorry you are having to play the wait and see game,Jana. Good luck with the x-rays

[Jaha]

I am going to be at CC tomorrow 6/29 for a RTX infusion. Is there anyone else going to be at the clinic on Monday 6/29 for appts or infusions? If so I'll there from 8-4, send me a pm, it would be nice to meet up.

[Debbie C]

I won't be there then but I am going to see Dr. Langford on July 8th at 1:30 if anyone will be there then. Sorry to miss you again Jana but hope the infusion goes well....Good luck

[Jaha]

Well I got thru another infusion on 6/29. They gave me IV Solemedral, Tylenol and 780 dose of RTX. They told me that they were just going to give me the one dose at this time and make it an extra strong one. I was so shaky and afterwards, so I've been in hibernation since then. I did get a some coughing, low grade fever, aches and nausea, so took the Benadryl and Tylenol every four hours for about 24hrs. I was suppose to make a follow up appt. with Villa-Forte in two weeks and then I get a message that they scheduled another Tx on Tuesday, I tried to call on Friday and could not get any answer, so cancelled it online, until I talk to someone about this. Meanwhile, the Neuro had ordered a Cervical x-ray and I have a mess to deal with there now, from all the steroid usage over 5 yrs. I am so sick and tired of all the complications of this ugly, crappy, totally unpredictable disease. I had gotten down to 9mg of Preds and had to take it back to ten because of the joint pain, maybe I can try again soon. Just looking for a break somewhere in all this.

[renidrag]

Well, not that I like it just wanted you to know I read it and am hoping some good comes your way soon. I wonder if Andrew can come up with another word to reply, as in "okay" or "thinking of you" and of course "following" then we don't have to like something that is not necessarily likable.
Dale

[drz]

Well I got thru another infusion on 6/29. They gave me IV Solemedral, Tylenol and 780 dose of RTX. They told me that they were just going to give me the one dose at this time and make it an extra strong one. I was so shaky and afterwards, so I've been in hibernation since then. I did get a some coughing, low grade fever, aches and nausea, so took the Benadryl and Tylenol every four hours for about 24hrs. I was suppose to make a follow up appt. with Villa-Forte in two weeks and then I get a message that they scheduled another Tx on Tuesday, I tried to call on Friday and could not get any answer, so cancelled it online, until I talk to someone about this. Meanwhile, the Neuro had ordered a Cervical x-ray and I have a mess to deal with there now, from all the steroid usage over 5 yrs. I am so sick and tired of all the complications of this ugly, crappy, totally unpredictable disease. I had gotten down to 9mg of Preds and had to take it back to ten because of the joint pain, maybe I can try again soon. Just looking for a break somewhere in all this.


Hope you get a break soon from the disease that often just seems to keep on giving us more to deal with. You would think that we would be like the premium travelers on the air lines that get extra red carpet service because of all the business we give them. Too bad we don't get frequent flyer miles or points on a reward card we can cash in. Or at least some prompt personal responses to our questions and needs.

[Dirty Don]

Hang tough...breaks come when we least expect them. Here's some spoons...stay with the program...you'll get there.

[Jaha]

Hey I do like the idea of the rewards program, ha ha! Thanks for the keep your head up spirit, everyone, I'm just having a rough bump in the road these days. It seems the more I go see these docs that I'm suppose to, the more issues they are finding. I'm pretty tough, I will not let it take to big of chunk out of me, I guess I'm just going to have to step up my game plan on this war!!!!!

[Debbie C]

Well, not that I like it just wanted you to know I read it and am hoping some good comes your way soon. I wonder if Andrew can come up with another word to reply, as in "okay" or "thinking of you" and of course "following" then we don't have to like something that is not necessarily likable.
Dale

I "like " that idea Dale, I sometimes feel stupid liking something that is bad. Get on that Andrew !!!!

[Debbie C]

Hope you are feeling better now,Jana. Boy you do have a lot of crap going on at once. That's odd the way they did your infusion. Why did they make it so strong and then want you to have another so soon ??? Keep us posted on everything.:hug2:

[Jaha]

I think it is odd that they had me do such a large dose, and told me I would not need another for awhile and then scheduled one next week. I cancelled that infusion and tried to get a follow up with the doc and could not get in to see her. They didn't have her call me back either. I have also been trying to get into see the Neurologist for a follow up and can't see her until Oct sometime. That's ok for now because, last weekend I began to have really high blood pressure and pulse, so I had to get that under control this week with my PCP. She had to put me on BP meds and up my water pills as I gained 10lbs in 3 days. She also gave permission to take my anxiety meds as prescribed, instead of using it to sleep with. The last two days I am starting to feel better and hope it continues. Will have to get back to the other docs later, one thing at a time.