The weather cooled off and myasthenia better!!

[irish]

Just a quick not about the cool weather. This summer was one of the worst ones I have had with my myasthenia. Just felt terrible plus that sweating/weird feeling that one gets with the autoimmune stuff. I had all I could do to get anything at all done. Poor hubby almost went hungry somedays as I didn't feel good enough to cook and neither did he.

Anyway, called neuro first of Aug and had the prednisone upped to 20 mgm every day for 2 weeks, then 15 mgm for 2 weeks and then down to 10 mgm every day until my next appt in Dec. Neuro felt that by Dec I should get my life back.

This past week when it cooled off the first time I felt some better and then we had another go round of hot days. My SIL from AZ had been here and she had been doing the cooking, etc. How embarrassing is that.

Anyway, the next time it cooled off it was like a miracle. I still need my Mestinon for weakness, but the weakness is nothing like it was and my breathing is better now too. When your breathing is affected by Myasthenia is can get dicey.

However, God Bless my Sjogrens cause I am now the driest I have ever been and the lymph tissues in my throat and down into my airway seem to be doing something very weird and I now have a dry hacky cough and feel like I am full of all that thick mucus. Which leaves me in the same place I have been for 12 years. Hanging over the sink many times a day trying to drain out my airway.

Soooo, I guess the lesson learned from this is that there is always hope, but sometimes one thing will get better and another thing will get worse. The good thing is that my brain fog has cleared up considerably. I always know when my autoimmune is doing things to me as my brain fog gets worse and so does my insomnia, uneasiness and bad nights.

I hope that for all of you the cooler weather is adding a little zip to your step. There is nothing that drags a person down like the heat we had this summer with the 82 degree dew points. I called my neuro to tell her I was doing so much better and the message was relayed to me that next summer I need to go to Alaska. Sound good to me!!!!!Take care all. Irish

[Meld256]

irish,

I'm so very glad you are feeling better!!   

I'll write more later (need to "hit the sack" early tonight), but wanted to say "GOOD for YOU!."
Melinda

[Joe S.]

I understand the heat issue. The colder weather just hit my RA joints today. Lots of work to get done before winter. I hope the furnace works this year.

[tracyj]

Hi Irish,

Glad your MG is feeling a bit better.   You have my best wishes.   I was diagnosed with MG at 3 years of age (now 42)   Fortunately for me I can't remember the worst of it or don't want to remember!!  I was on massive dosages of mestinon as a kid.   I was weaned off Mestinon at the age of about 12,  for some reason as I hit puberty I needed less and then the dosage got down to nothing.  I was on and off Mestinon again as a Uni student, but have been off it for many years.    I used to live in defiance of it but I would still get really tired (I suppose I really haven't known what its like to not get tired) but with me the sjogrens was the "straw that broke the camel's back":  Now with the two together there is not denying fatigue and I've had to stop much of what I did before and reinvent my life.   

I hope you eventually go into remission like me, you'll still get tired as the damage to our nerve receptors doesn't go away, but you won't need as much mestinon.   Mestinon works, but I found the side effects were just horrible.  I hope to never have to take it again!

Best of luck - I hope things keep improving.

Tracy

[harrigan]

So glad you are feeling better in some ways Irish!  While you have been beaten by the sun, here in NW England we had the coldest, wettest summer for years.  I don't like heat - I'm perfect when it's time ti think about taking a cardigan off!- but bed socks in August?  Central heating in the single figure part of September?  Brrrr!

I love hearing how you are all getting along  XX Ailsa

[eyeamdry]

Irish, wish you the best in this cooler weather.  I tried to type this out last night and my puter wouldn't cooperate.  My hubby is deer hunting this week, but just around here. There is a special hunt on does.  We are flooded with deer and so many car/deer accidents.  Deer eating ppl's gardens. In the northern part of lower peninsula the deer population is way down.  Guess they all migrated down here.

Enjoy your cooler weather.

[Daisy1234]

Irish,

You certainly are a trooper!  I'm so glad that your myasthenia has improved finally, but sorry to hear that the Sjs is now acting up.  You are so right about the autoimmune aspect, something always waxes when something else wanes. 

Hugs,
Daisy

[Joe S.]

The furnace did not start. We played with the connectors and it started. At least we do not have that extra bill.

I am glad that the cool air is helping Irish feel better. The Mold is acting up with the change in weather. If you are allergic to it that could cause a Sjogren's flair.

[irish]

Joe, I hope that your furnace stays a chugging along. Heavens knows we need them to work in this weather. Yes, the mold is high and my nose has been stuffed beyond belief lately. I hate having to quirt Flonase and my antihistamine spray cause it is so drying. When your nose is so swollen up that you can hard breath you sort of forget about the dryness.

Tracyj, It is so interesting to hear that you got Myasthenia at such an early age. I am certainly glad that it doesn't bother you as much as it did.

I have had the weakness since I was about 20 and then when I was 21 I had a skull fracture and brain concussion while rollar skating. This is what sent me over the edge. The doctors really missed the boat on me over this one. I was always having to sit down and rest a little and always felt like a semi ran over me.

I managed to have 3 babies and work and all that stuff, but life was not easy and no one had a clue. I was and still am a good actress. I also had the Sjogrens symptoms at that time also and they just got worse. Mostly the teeth problems, aching in every joint and muscle, neuropathy from the knees down for about 1 1/2 years, and fatigue and more fatigue.

I am now 68 years old and I get IVIG once a month for my myasthenia gravis. My antistriated muscle antibodies were extremely high and my immunologist could not believe that I was doing as well as I was. I did have breathing issues off and on but I always thought it was from the asthma. I also have had many infections for years and doctors gave me heck for always coming in for antibiotics.

My t-cells are as low as a person with HIV and my doc also can't believe that I haven't been more sick. Anyway, I just keep on chugging and do take the Mestinon. It can be miserable, but I am very drug sensitive so can only take 30 mgm at a time and then another 30 mgm in another hour or so.

Glad to see you on this board. Yes, the sjogrens has many surprises for us and it sure helps to have all these people for information and support. Take care. Irish

[susanep]

irish I am so sorry to hear of the problems you have had, but glad when you have cooler weather and have some relief. I know it goes from one thing to another. Any relief in any area is a blessing.

I said a prayer for you, and everyone else on the board for some relief, and good days.

You take care
susanep 

[Meld256]

irish,

It surely does seem when one thing improves, something else comes along.  But if you are feeling better overall, I am really glad for you!  You deserve a break of some kind!   

I'm happy about the cooler weather, too. I cannot handle the high dew points and heat. We've had some temps in the 50's and 60's and I love it. 
I hope your sinus issues stay somewhat under control with all this mold going around. I know you'll keep "chugging along."   
Take care of yourself,

Melinda