[ras1256]

Anyone who is on prednisone - how long after your initial dose was it before you felt some relief from weakness? My Neuro has me all confused because Thursday he had me start a short round and said if I felt relief from the large dose, then got worse as it tapered down to a really minimal dose (5 day dosage) he would be more comfy with my diagnosis. He said to call in 5 days, which I did, and let him know. I took the larger dose of a grand total of 24 mg Thursday night and Fri morn woke feeling some relief and jittery - then with the 8mg + 4mg +4mg on Friday, was able to walk fairly well - today on a measly 4 mg this a.m. and no more until tonight, I am weakening again. Told him this and he said it doesn't work that way????
Help!! Now he wants me to see the head of Denver's MDA for [I]another[I] opinion on my 5 year old diagnosis. I'm really getting tired of this!!!!!
Becky

[MissyGirl]

LOL, you NEED to see someone else, because your doc is strange! LOL Never heard of such dosing, and totally opposite of what someone with MG would do.

Take him up on his offer...although I've heard through the grapevine (was considering a move to CO a few years ago) that the neuros in general are not that great for MG. Hopefully you'll find someone who can help you---and SOON.

[AnnieB3]

Becky, I read your other post but decided to reply here.

I love how doctors doubt diagnoses. Did you feel your original diagnosis was accurate and thorough? Do you have all the paperwork? Did they ever run the MuSK antibody test for you?

I agree with Missy that that dosing is strange. What's even stranger is how they could put you through a rediagnosis while on drugs that can make the antibody tests and EMG's appear normal! Prednisone can make the antibodies disappear, which is its job! And it can make an EMG go negative.

If I were you, I guess I'd want to see another expert just to make sure I had a good treatment plan in place, especially for when you get worse.

Everyone reacts to Pred differently. It can make you worse in the short term. Some people get better on it right away, however. That's why such a short term dose is not usually given! And a good neuro will try to dose every other day in an attempt to keep your adrenal glands working. When you are on Pred long-term, every day, the adrenals shut down. I mean, why would they need to work since you have Pred doing their job for them! And if he didn't explain the long-term effects like Pred-induced diabetes and reduction in bone density, then you need to have that conversation as well!

I hope you can get a neuro to take you seriously and get you treatment you need that makes sense.

Annie

[ras1256]

Thanks Annie and Missy. I did request a transfer of records from my old neuro to him but I better double check tha the got them. I originally went to him due to an MRI with possible problems due to previous cervical discectomies, so maybe he's confusing everything. I do feel that the original diagnosis was right and I've never shown the antibodies - I don't think he's gotten the recent MuSK result back yet and don't remember if that test was around when I was dx in 2004 or not. I guess I'd better get copies of the original tests that dx'd me. Missy mentioned she heard there was a lack of good MG docs in Denver, and I'd definately have to say I've had my share of issues! I'm thinking about going to Johns-Hopkins - maybe everybody would listen if they give me a dx - what do you think?
Thanks for listening! I really do think maybe I'm nuts sometimes when they do this to me.
Becky

[AnnieB3]

Kansas is closer than Johns Hopkins! Dr. Barohn is awesome, or so I've heard.

*-*

BTW, my neuro said that I only "think" that my legs are weaker because I don't walk on my arms! It may just be a perception that your legs are the weakest area. And whatever muscles you use most will be the weakest. When I had my breathing crisis in 2005, my talking muscles were spared - I wasn't talking that much during the time before that.

[Scots Kat]

Gosh Becky! This is a bit scary actually! Steroids aren't things to muck about with and in my humble opinion (not professional by any stretch) they shouldn't be used to ascertain a diagnosis!! When I was started on my pred (60mg daily) my neuro hosipitalised me for 4 days to see if I had any adverse reactions. I was fine the whole time and ended up making my Christmas Cards and writing report cards in my spare time (it was great - like a retreat or something)! I didn't really feel any different for a few weeks and even went back to the hospital for IVIG about 8 weeks later because I still felt weaker than I liked. Now I LOVE my steroids. I'm down to 40 mg every second day and would like to reduce further, but I'm really not strong enough just yet. I can really tell the difference between my steroid days and my normal days.

I hope you get some good information (and maybe a better doctor) soon! Take care of yourself!
~Kathy

[neutro]

Hi Becky,
You could have a look on the last post I put up in the front of this forum "Useful sites for Myastenia Gravis".
It will give you some considerations on the use of Pred: about the onset of action, it indicates "1 to 3 months" and the different dosages for in- and out-patients, higher doses to start for inpatients because there is a risk in the initial days…
I share the opinion already given about the Pred scheme you were given…although I could figure out some reason about it: if it works at the beginning and then your condition deteriorate with the taper, that would be a double confirmation for MG but I think (but I'm no neuro…!) it doesn't work that way because the onset of action for an improvement would take longer.
Could you tell us about your symptoms?
Maurice.

[ras1256]

Thanks for all the replys. Hopefully you guys can let me know if ANYTHING in my symptoms sound way off base or not.

History - 20+ yrs. ago, I noticed several times while playing cards into the night with friends that my R lid would droop - I would comment on needing a toothpick to hold my eye open so I could keep playing. Don't remember how long that went on but it was always better in a.m. so I never pursued it.
I haven't ever felt an eye droop since back then.

1991 - Car accident with severe whiplash and cervical disc injury, I had a period of time (again, I dont remember how long) that I was having difficulty swallowing even water and choking on food. That resolved as well, but I do choke on liquids, even saliva, sporadically and shortly after my last dx I was having a problem with swallowing, chewing, etc. when I was bad.

1996 - Collapsed after shopping with my daughter. Everything went away - fell flat on my face and couldn't open my eyes, respond to my husband and daughter or even brace the arm my husband had lifted when he let go to keep it from slamming to the floor. Months later, after a pos. tensilon injection I had the preliminary dx for MG, but came up anitbody neg. and
my neuro at the time said the RNS was negative. He was an idot though, and I have good reason to believe it wasn't a good test. (He then said I needed to be in a psych hospital and didn't even try to find anything else - I think I offended him when I told him it seemed when he was doing the test that something wasn't working right.) At that time - I couldn't get around by myself due to weakness and spent alot of time laying on the couch barely breathing and wondering how you could possibly be that weak and still be alive. That total-body-absolute weakness would last for quite a while, then I would pull out of it on my own. Months later I was dx'd (different neuro) with cord compression and after surgery on my neck I was able to walk, but never seemed to regain the ability to make it through an excercise session. Over the next several years the amount of physical activity I could do declined more and more before I would be exhausted and have to rest, I started getting these brain fogs that were noticeable by others, etc. I couldn't seem to get my house cleaned in 1 day anymore on the weekend as I had done for years. Rest would perk me up, but not enough that I could resume activity. I would get double vision at work toward the end of the day (which I mistook for blurry vision for years), but it was only when focusing up close.
Oct 2003 - when I had been pushing real hard at a new job and getting a 50th anniv. party together for in-laws, the leg weakness started again. I was having problems with another disc bulge, so went to my neurosurgeon. At that time I was showing hyperreflexive in my legs but the MRI didn't show any compression. In December the weakness resolved mostly.
April 2004 - While eating a bagel on the way to work by neck starting feeling stressed, I suddenly couldn't keep chewing, couldn't swallow and my legs were starting to fade. I reclined in my seat as much as possible to get to work to rest. There, I called from my cell to tell them I couldn't get out of my car. They called family to come get me and my boss came out and sat with me until family got there. He said later that when he helped transfer me to my daughters car it was dead weight. I couldn't help at all. My husband carried me into my surgeon, and when I didn't show hyperreflexive but was so much weaker she mentioned myasthenia. She hospitalized me, called in a hot shot dx Neuro, ordered full spine and brain MRI. The Neuro tested my legs with them straight out and found no strength. Having me focus on her raised finger I went into double vision. Her RNS showed 76% decrement in an upper arm muscle ,23% in the face and minimal (don't remember the %) in the forearm. That with the positive tensilon in 1996 caused her to dx me MG - she said for sure, absolutely. I crashed and burned on a pulmonary function test - just suddenly couldn't do it and difficulty breathing until I took some mestinon. I was never in ICU for crisis, but am told I should've gone a few times. Just sick of drs./hospitals and the whole thing! My dog saved my life once by pestering me enough to get my adrenaline going enough to know I needed to signal someone to get me Mestinon. (She went and laid down after I came out of it) I had a thymectomy in 2004, did the IVIG (didn't notice much from that), took prednisone, then imuran with the mestinon.
Anway, I was told by my fave neuro in 2007 that I was controlled and she felt the other symptoms I had were residual from my cord compression, making me look more like MS (occassional bladder incontenance, numbness, tinglin and painful spasms) but they had looked for MS for 8 years and it's never shown.

I was controlled or in remission until I had this aneurysm coil procedure 1/27/09. I ran a low grade temp in the hospital after the procedure, but didn't do anything at all for 35 hours. They had me walk around a small area, then immediately sent me home. I was very tired at home and didn't try a shower until the next evening. All I got done was shampooing my hair. My legs started feeling that "work out to hard" feeling, then my arms were to stressed to finish. Then I think I had a drop in BP cause I barely made it out without passing out - no breathing difficulty or double vision. I lay on my bed for awhile, and felt recovered enough but the leg weakness was still there and still is. Symptoms now are chiefly leg issues - unable to stand without using my hands-wicked fatigue in the afternoon, talking too much has started to weaken me again, I get hoarse as I get weaker. I'm starting to notice more vision problems, though no droopy lids. By the afternoon at work I usually am supporting my head in my hands or my neck feels overworked. My mid upper back gets weak if I sit without my head resting on something or if I stand to long (getting ready for work). I get better to varying degrees with Mestinon (my RX is about a year old - do you think it's too old?) I have brain fog pretty bad too when I feel weak which the Mestinon helps. I have had to cut my work hours and have called in sick or left real early 3 days last week. The prednisone did help by the next morning and even more by the next night - didn't even need the Mestinon to get around. By day 4 (Sunday) I was supplementing with Mestinon and by day 5 on the 60mg x 3 and still not great. One thing I do have is this weird rash - been around for about 6 mos. though, so I don't think it has anything to do with it directly. Itches and migrates around from back to tummy to legs to face to chest. My doc and dermotologist have thrown some steroid creams and ointments at me for it but it never went away completely. They weren't exactly sure what it was. It was going away pretty fast when I took the prenisone orally, though it is back again just as before now already.
Is this something my neuro needs to see? I've been wondering if a germ or allergy to something combined with the recent procedure could have gotten me started again. It definately has SOMETHING to do with that coiling procedure in my opinion.

Again, sorry so long - and I'm not usually this big a whiner/complainer...honest ! It's just that it was a long scary pull to get to remission before, and I don't know if I have that much fight left in me now. Sometimes I think I'll just blow the drs. off, retire from work (can't really afford that!!!) sit home and get fat and sassier. My husband isn't too crazy about that plan, though , so I guess I'll just keep
Becky

[AnnieB3]

Becky, Yes, anything new like a rash is most definitely something your neuro should see. Maybe even a rheumatologist. Did the dermatologist define what kind of rash it was? Take a biopsy? If not, they should have. It could be celiac disease, a reaction to a med, dermatomyositis, lupus or a number of other things; all of which need attention right away. A rash is a signal to you that something else is going on! It is not usually a "disease" in and of itself.

It sure sounds to me like you have MG. And here comes the lecture . . . If you are EVER in a place where you can't open your eyes or breathe or move or swallow, you need to call 911. Period. Breathing in MG can decompensate very quickly and there is no way to tell if it'll get so bad that you can stop breathing. ICU is absolutely the place to be. I've had a crisis and it is incredibly scary. It sounds like you have had more than one. You are very lucky you are still here. It's not up to you to figure out why you aren't breathing! The doctors can do that in the ICU. At the very least, they can put you on Bi-Pap to rest your breathing muscles, which is a new thing they're doing now instead of intubating.

Anything like an infection or surgery or stress or heat or whatever can flare MG. It doesn't take much. And those things can also bring on a new autoimmune disease. Not nice to think about but true. I got celiac disease after surgery in 2004.

Please do not give up on doctors. I know that some of them are a pain but you NEED them when you get worse or have new symptoms. There are very good ones out there!!!

Has anyone checked your oxygen saturation or arterial blood gas when you are having bad breathing? If not, they should have. If you don't have a good pulmonologist, get one. They are often as if not more valuable than neuros. They usually work with neuros during an MG crisis in a hospital setting. My pulmy is excellent at monitoring me and helping me through any exacerbation. She's invaluable.

So please, just go and get some good help. You really sound like you need some.

Annie

BTW, The National Jewish Center in Denver is one of the best pulmonology centers in the country.

[erinhermes]

I felt better after a few days - BUT I was also on IV IG at the same time. It was during my last real crisis, so I was on roids, mestinon and had that IV IG flowing into my veins as fast at they could give it to me........

I was started @ 10 mgs, doubled to 20 the 2nd day and by the 8th day I was at 80 mgs - @ 80 I felt GREAT!

Sounds like your neuro has things backwards........

I was told by my onc and neuro that steroids can initially cause pretty serious weakness - especially in the legs - learned that the hard way - got stuck - and that's why I was started on everything while still on the hospital.........

Hope you get some relief soon!

Erin

Originally Posted by ras1256

Anyone who is on prednisone - how long after your initial dose was it before you felt some relief from weakness? My Neuro has me all confused because Thursday he had me start a short round and said if I felt relief from the large dose, then got worse as it tapered down to a really minimal dose (5 day dosage) he would be more comfy with my diagnosis. He said to call in 5 days, which I did, and let him know. I took the larger dose of a grand total of 24 mg Thursday night and Fri morn woke feeling some relief and jittery - then with the 8mg + 4mg +4mg on Friday, was able to walk fairly well - today on a measly 4 mg this a.m. and no more until tonight, I am weakening again. Told him this and he said it doesn't work that way????
Help!! Now he wants me to see the head of Denver's MDA for [I]another[I] opinion on my 5 year old diagnosis. I'm really getting tired of this!!!!!
Becky