Medical update.

[JanusAscending]

Well........I went to see the Infectious Disease specialist yesterday, to see if he could shine some light on why I keep getting recurring Oral Thrush. This is a battle I started last Sept.!!! He concluded from my history that I probably have a immune deficiency disorder. He referred me to a Reumatologist, who I'll be seeing next week. Today I saw my neurologist, who did a series of tests called EMG on my legs and back. He was very concerned and called my Primary care Dr. to have him schedule an MRI. Still no one has prescribed any meds for the excruciating pain I'm in, but I am hopeful that we will get to the bottom of this soon. That...or I am going to end up in a wheelchair!! I took the Senior bus to yesterdays appt. and when I returned home, with my cane in my right hand, and holding onto the safety bar on the bus with my left, when I stepped down the first step...my good leg gave out and I almost fell on my ass! The poor bus driver almost had a heart attack. Something is attacking my muscles and there is definitely quite a bit of nerve damage from my Arthritic spine. Dr. said that certain types of immune def. diseases can damage internal organs as well as muscle mass. So the saga continues, but if this is what it takes to get ready for the shift, I hope it comes sooner than later, and either give me my new body or let the old one leave for the other side already!! Thanks for bearing with me and keep sending the love and light and prayers please.:grouphug: LUV YA!!

[I Have A Dream]

1. I'm so sorry that you're going through this, JA.

You've been through so much. :(

I will definitely send you light and love and will keep you in my prayers. :hug:

[JanusAscending]

4. Thanks Dream...

I got it wrong. I guess it's affecting my brain too, I know it has my typing! It's called Auto Immune Def. Disorder. They don't think it's lupus, but could be any number of syndromes. I have inflammation through my whole system. The red tongue (that looks like someone took a shredder to it is back) Not only can I not taste anything again, but course or rough textured foods actually hurt to chew. The steroids I was on for a short while almost had it licked, but they would have to give me a lower dosage or a similar drug for my body to take it. I had very bad side effects from them at first.

[Flying Dream Blues]

2. JA, I'm also sorry you are still going through so much

physical pain and have had such a hard road to even finding out what is happening. It sounds like maybe your new specialist might be on the right track. I think you are brave and courageous and I'm glad you can come here to get support. I admire the way you're handling this and am sending you vibes of love, support and healing. Take care and keep fighting. And keep us posted, too!
:hug:

:grouphug:

[JanusAscending]

5. I will keep fighting...

if for nothing else but my "little man" Nana's boy. He went with me and his Momma to the Neurologist today. He had to wait an hour in the waiting room, and was so good. He entertained everyone! I found out he likes elevators, and likes to push the buttons.

[Flying Dream Blues]

11. Your little guy sounds so cute.

I remember that "lemme push the button" stage! :) I know how they can make you smile and feel happier, even through the pain. I'm glad you have him and his momma to help cheer you.

:loveya:

[BanzaiBonnie]

3. Oh JA

If you want I'll do what I can to send ease and comfort. Just give me the word.

I hope you're close to figuring this out. And I still don't understand why the docs did not get on this sooner. I remember when you first got the thrush problem last fall. I know this has been frustrating and awful, but at least you have them working on it now.

:grouphug:

[JanusAscending]

6. You got the word girl!

Thank God I have had no trouble sleeping. That reminds me, I forgot to take my sleep meds........OK just took them. When I wake up in the AM, it takes a lot of stretching to get my muscles awake before I can get my feet under me and moving. I saw my Dad go through this in his last year before he passed. The last hospital stay and nursing home recovery, was so hard on him because when he was released, he could no longer walk at all. He felt so bad for me because I had to do everything for him, with the help of home hospice care. I don't want to end up like he did. To me he wasn't a burden, but I don't want to burden my children. I've instructed them to put me in a nursing home when I get that bad. He ultimately had to go into hospice where he survived two days, and was gone on his birthday!

[OneGrassRoot]

7. Bless you, JA...

We all so hoped you would have experienced some relief along the way by now. I am also so very sorry you're going through this...still. :cry:

:hug: :hug: :hug: :hug: :hug:

[get the red out]

8. Prayers for Drs to figure this out and help you!

Bless your soul, that's so terrible, made worse by the fact that the Drs are having such a hard time figuring it out. I hope they can come up with a treatment plan to help you soon!

[Sanity Claws]

9. Sending prayers

May you receive the medical help you need to lead a pain-free joyful life.

[MorningGlow]

10. Can you have your doctor check your gut bacteria?

I don't know if anyone recommended this before--I think they did, when all you had was the oral thrush--but that was the first thing that popped into my mind when I read your OP. I had forgotten that thrush is candida, but that was the word that was in my head, and I know that candida can also attack your gut (along with other gut bacteria imbalances).

In the meantime, sending light and love to you, JA. You definitely don't deserve this challenge--you should be able to relax and enjoy your grandson! Keep fighting, woman. You can do it. :hug: :hug: :hug:

[JanusAscending]

23. I tried to respond to this a couple of days ago,

and when I did the spell check, my puter froze up, so I just said "F it!" and went to bed. Yes , at my insistance they did blood tests for candida and some cultures. All came back NEG.!!!

[Fire Walk With Me]

12. Prayers and best wishes continue...

:hug:

[japple]

13. Dear JA, I am asking the Universe to send you comfort and to

give you caring, competent doctors who will help you get the treatment you need. I hope this will end soon.

Peace & love,
Judith

[PhillyGurl]

14. Sorry JA, hope you get to the bottom of this

have they ruled out thyroid?

[JanusAscending]

15. As of now .....yes.

I went for bloodwork at the lab today. I had an episode of thyroid problems about three years ago. they put me on synthroid ( I had hypo T)and after taking it for less than a couple of weeks I went back for labs, and I had Hyper T which caused irregular heart beats, at which time they took me off all T meds and decided to just watch it. They called it Thyroiditis??? It's read within normal ranges since!! Now they have me on prednisone because of all the pain and immflamation in my body, and suspect "auto immune disorder". I'm seeing a rheumatologist on June 30th, and had to push my MRI back to next Thursday because of scheduling problems. The prednisone is killing me (at least my head and sleep patterns.

[MorningGlow]

18. Maybe they should check it again

The thyroid is very sensitive. They should also check "free T3" along with the regular thyroid test, TSH. If free T3 is off, then there's a thyroid problem. My TSH has always been within the "normal" range, yet I have severe thyroid problems. Made it hell to get diagnosed.

[JanusAscending]

21. I was just tested for it yesterday.

When I get the results, I will bring this up with my PC or the new Specialist on June 30th. Oh, and another thing, I had very bad reactions to the prednisone yesterday, so they lowered my dose. He won't take me off them cold turkey because "it could kill me"! My daughter was on it for her Graves disease for a while and couldn't tolerate it either. They put her on a different steroid "dexamethazone" for a while. Has anyone ever heard of it, or know anything about it?
To add more fuel to the fire...my pulmonologist called me this AM with the results of my overnight test sleeping with a pulse o2 moniter, and it was bad enough for them to want me to do a sleepover at the hospital for a sleep apnea study!! I am reluctent to waste their time and mine. They won't allow any sleep meds, and without them I will not sleep....period! I'm pretty sure I don't have it. I don't snore, and my kids all tell me I'm a very quiet sleeper!????? Lord...just shoot me now!!

[Tess49]

16. Have you been tested for Lyme disease? For some reason

this flashed through my mind when I started reading your post.

[BanzaiBonnie]

17. Good thinking - or good flash Tess

JA, if they've not tested you for Lyme, please bring it up. And any good rheumatologist should know about it.

[JanusAscending]

20. I will be sure to bring it up!

another thing...re the spleen? I watched Dr. Oz this AM and they had a rerun I hadn't seen before that explained that an injury to the abdomen can affect the spleen , which in turn can cause auto immune def.!!! I took a flying belly flopper about 3 years ago while walking a clients pit bull, and ended up flat on my face in the middle of main st.! Fortunately for the dog and myself, there was no traffic at the time. I went through many tests via workmens comp, and ultimately they released me for "light duty" (home companion) I was unable to continue with this job, and haven't been able to work since. Of course "nothing showed up" on the cat scan, and was treated with pain meds, (I had bruised ribs and whiplash) ...the end! I'm wondering if an injury that far back could just now be rearing it's ugly head? It's very hard to get a Dr. to do a Lyme test in Ct. for some reason??? but maybe the specialist will make an effort. I'm going to ask the Neurologist if when they do the MRI for my spine, if they can squeeze a shot of my spleen in the image, just to check it for damage???

[Tess49]

24. Hard to get Lyme disease testing in CT? Well, that's crazy, isn't it?

As you know, the first cases were from Connecticut -- hence the name. Many times, people are bitten by a tick, don't realize it, and never get the bull's eye rash associated with Lyme disease. They start getting the bizarre symptoms, and it takes a good while to put everything together. Hope you get this figured out, whatever it is.

[JanusAscending]

25. I think the reason is...

there have been too many "false positives" resulting from the tests, ergo many medical liability suits. Dr.'s nowadays are scared shitless of malpractice litigation.....especially the few that still accept medicare patients and consignment of the uncovered co pay. They are far and few between. In the nearest city to me, Waterbury there are two hospitals. There is one Reumatologist in the city (the one I'm seeing, who happens to be the brother of my Neurologist) In the whole County I live in there are a total of FIVE!! I have read that across the country they are not getting accurate test readings for Lyme disease, so are reluctant to even test for it!!

[Cleita]

19. Hi Jan. I'm so sad that you are going through this.

Have you considered medical marijuana to manage the pain? Your medical problems make you a good candidate for it and it's not as harmful as the many prescription pain medication on the market.

[JanusAscending]

22. Not at all interested....

I'm smoke free and struggling to stay that way.(although I've had a few relapses brought on by stress, and just not giving a damn! Strangely enough, although my brain doesn't tolerate the prednisone very well, the pain from the back and pinched nerves has subsided. They help alleviate the inflammation in my whole body. There is however, still a lot of muscle weakness in the legs (from lack of use I'd guess)?????

[Cleita]

27. You don't have to smoke it. There are even pills called Marinol.

However, if you aren't comfortable with the idea, I understand. Also, it may not be legal in your state.

[JanusAscending]

26. Forgive me if that came off sounding too abrupt!!

It must be the meds. I wish I could try it though!! lol

[BanzaiBonnie]

28. Is there a rheumatologist report yet?

still in prayer for you