Immunologist visit---awesome

[irish]

Today I had my monthly infusion and my 3 month checkup with my Immunologist. He spent 1 hour 15 minutes with me. Rechecked my more recent drs notes from other doc visits. Went over my different problems and discussed treatments and issues.

He said I had 19 diagnoses which he thought was really a lot. He also said that I really was a challenge and had lots going on. Don't we know it when we live with it. Also, he said my last CD4 was 179 and I told him that it is as bad as an Aids patient. He said it was worse than an aids patient. The good thing is that what cd4 cells that I do have seem to be working fairly well but I am still at high risk for infections. I still want to know why I have this and so does he!!!!

We discussed the Plaquenil and he said that I could take it with the low t-cells but he would like me to hold off for now.Actually, I am on the IVIG and it seems to be starting to show some signs of helping my myasthenia. I am in the process of a pulmonologists work up with a probable bronchoscopy to try and find out what is going on with my lungs and all this mucus. After things settle down some I want to try and see how the plaquenil will work.

I also have a lymph node in my right breast and had to have an ultra sound. Seems like I have had this before but the doc thinks I need to have it removed or biopsied. He also said that it could be from infection in my lungs. Imagine that---I never would have thought of it.

He told me that my plentiful growth of skin tags are because of my low t-cells count. This allows a certain virus to infect me that grows this type of skin tags. Amazing!!! Learned something new today.

Also, he tols me several times that I need to be sure and call them whenever I have a health issue or a problem as they want to keep abreast of things. I told him I try to do this but I really feel guilty because I am not nearly as sick as so many of his other patients and don't want to take up the staff time. He told me "call, that is what we are here for---we are here for you night or day and we are a family---we are all here to support people with chronic illness." I said God Bless all of you. He said that "we have a different philosophy in the way we treat patients." And they do. I can't begin to tell you how it feels to go to someone who doesn't sit there and look at the clock like they want to get out as soon as possible.

I told him that my Internist hasn't even touched me, as in felt my glands, checked my heart, checked my throat.etc. My doc said "he is scared of all your problems". So gang, that must be the low down on all these docs that don't seem to do anything for us.

He also told me that I have extremely severe Hashimotos and my tests were off the charts plus severe Sjogrens. The SSA-Ro was 42.6 and normal is below 19. I had never heard what it was so that was interesting. Also told me that the IVIG would help my Pemphigoid skin autoimmune disease.

The most interesting thing continues to be that it sounds as though the t-cell issues are genetic/hereditary and that this has caused my immune system to go wild and attack my body. So the t-cells must really be the gate keepers for the health of the immune system. Or at least in my case. He can rattle these things off so fast it is unbelieveable.

I also have an eye issue that I thought at first might be working up to a detached retina. I called my DIL who is an optometrist and she thought it was a vitreous detachment which has a few similar symptoms related to the retina issues. She said to watch it. I do plan to have it checked tomorrow by an optometrist in town who DIL has worked with so I know that he will refer me it I have issues. Tomorrow if Friday so I had better get it done then!!!! It is just one thing after another but we just keep hanging on and doing our best. I had better be ok as hubby wants to paint the family room this weekend.

Take care all. Irish

[Pooh]

Irish I've known you now for almost 5 yrs. and all I can say is "IT'S ABOUT TIME".  Thank God you have finally found a doctor that talks to you like an intelligent human being.  Not only that but he explains everything to you. 

I can only imagine the relief you must feel now.  Great news and I hope you continue on the upward path.  Take care and don't overdo the painting. 

I'm gaining on you.  The barn is 98% finished.  All it needs is a coat of paint and that will be done over 4th of July.  Hubby has the wood for the kitchen island extension and now that he is feeling better, we will get to that.  Then we are done.  YEA!!!

Take care and I'm so very glad you are getting the treatment you deserve.  Hang in there and keep us updated on any more progress.

Hugs and God Bless,
Pooh

[Katybarstool]

Irish

You have been blessed with that wonderful doctor. Does he have a friend in the UK Joking aside, I am delighted that you have found someone so knowledgeable and caring. Wonderful.

Kathy

[Skylar]

Wow, that's wonderful. I'm so happy you have one doctor that cares so much to help manage all your diseases - that's so important.

Skylar

[jannz]

Hi Irish,

I don't get over here very much anymore  -- but I've often wondered how you were doing -- so it was good to be able to read your update.  I agree with your doctor -- you've got waaay too much stuff going on.   However, you seem to handle it all with amazing patience (??....is that the right word..??)...maybe tolerance (?....hmmmmnnn???).  OK ~whatever....  you get my meaning.

I did wonder what your doctor would think of LDN therapy since your T-cells seem to be at issue.   LDN therapy increases CD4 counts.

I wish you the best Irish.... I hope the painting project goes well! 

Jann

[LenV]

Whoopee Irish!!!  Finally a doctor who isn't afraid.  I'm just delighted to read your post and know you have someone who cares.  He is a rare bird and I'm grateful for him.  I hope each visit will prove fruitful for you.

Billye

[irish]

I started going to him in 2006 and he is the one who diagnosed me with the myasthenia and low t-cells. I was seeing him alternating with his PA every 6 months besides getting the IVIG at his big infusion clinic every month. The interesting thing is that they sort of start out treating you and as they learn to know you and watch your health status, blood work and other doctors care they learn more about you. This enables them to make more informed decisions about your health care.

If I had to quit going to infusion I would miss them terribly. They truly are a family of caregivers who care. This includes all the nurses, office workers, etc. The 2 doctors and PA, plus I would assume their triage nurse, have care conferences prior to your appointment so everyone is abreast of how you are doing. I was seen every 6 months and then every 4 months and now they have moved me up to every 3 months as they have become more informed about my health status. This probably is why they want to be called every time I have an event.

I do think that he doesn't quite understand my fatigue level yet but I would guess that is because, as they all say, I don't tend to rant and rave about many of my symptoms. I don't mean to understate things, but I think that I have gotten so used to being a certain way that I have accepted it as normal when it isn't.

I wish you could all have a group like this. The patients all interact and visit at infusion and we learn to know each other. There are people who are on home therapy or are through with therapy that come back to see the staff and visit. It is like you fall in love with them and just can't be away very long.

The man I visited with yesterday has been very ill for many years and he says that this immunologist is the more kind, compassionate and caring doctor that he has every seen. He said that during one of his serious surgeries the immunologist stayed up very late at night and personally faxed all the medical records that were needed for this mans care. Now how many doctors would even consider that part of their job.

I would love to get well enough to go back to nursing and work in his clinic but that will be only in my dreams. Irish

[Scottietottie]

Hi Irish 

The doc and his team sound great. I hope they can make you more comfortable than you've been for a while. It sure looks like they're going to try their damndest!

Take care - Scottie 

[Dolly Dimples]

  Irish, it's lovely to read stories such as yours today, it gives  us hope, and my God we all need that when dealing with all this crap in our daily lives... you so deserve it  Irish as you are one of the people on this site that helps so much and knows what you are talking about, probably because  you seem to have had everything that this curse can throw.. 
    Good luck,    and long may this Doctor reign !   Cheer's Dolly..

[eyeamdry]

What a doctor!  He gave you so much information, your brain must feel full.  After being brushed off, shrugged off, doesn't it feel good to have someone listen AND TALK?  Even willing to discuss skin tags.  I'm impressed and you're lucky to have him, although I'm sorry you have so many things to deal with.  Lucy

[Nettie]

Irish, what great news.  Wow, this gives me hope that I too might find that special doctor. 

I actually have lots of really good doctor's, but my Rheumatologist is mysteriously missing and has been for almost a year now. He is the one who diagnosed me on my first visit when I had gone years and through numerous doctor's looking for an answer.  Those remaining in his practice refuse to give honest answers regarding why he hasn't been available. They insist at each visit that he will be back.

Sadly, my Neurologist left his practice over a year ago as he is battling his own serious illness. 

The good news is that I seeing someone new in July who I expect to take over my care in these areas. 

How nice it must be to know that you can call 24 hours a day if needed!!

Take Care, Nettie

[aprildawn]

I am so happy for you!!  It feels so good to get some reasurance  and validation of your thoughts and feelings.  I went to a gynecologist for my yearly and my rheum. wanted me to have a hormonal workup.  It was the first time I saw him and he was wonderful. Fully knowledgable about sjogrens and said " yeah your a little complicated but I love a challenge.. we will work this out together and make you feel the best you can".  I was so elated.  I didn't feel like a hypochondriac at all!!!!!! he didn't actuallly do anything that day but I felt better just knowing someone wants to help! 

About those skin tags and tcell count.  I never heard about that.  I have alot. One time about 5 years ago a surgeon that was a friend took about 17 off my neck.......we stopped there.  haha.  I have alot but don't think I have had my t cells check.  I will have to look into that.  It's funny what you learn from here.  Congrats and hope your testing goes well.        Aprildawn

[irish]

As far as the skin tags go---I started with them back in the early 80's and the first time I went the dermatologist billed me for removal of 50 and I counted 100 when I got home. I looked like a had the measles as I had so many little bloody spots all over neck belly and underarms where he had "zapped me". I have gone several times and had them removed. When I was on the Methotrexate for 3 months they started to go away.

At times I would take dental floss and tie tightly around them and they would turn black and fall off. Also have used the wart removal stuff and that works well. When I got home from my appt on Thursday I looked in the mirror and actually I think that I have less skin tags than I did 3 months ago. Maybe the IV gamma globulin is doing that. Who know!!! Thankfully, I am at the age where I don't get too concerned about my looks. If I did I would have shut my self up in the house and hid under a bushel basket as I have looked pretty scuffy the past few years. Irish

[wordnerd]

Irish,

Though I'm sorry you're dealing with so many different medical issues, I'm so happy you've found a great doctor ready to take on the challenge!  That's more than half the battle right there!

*hugs*

-Lauren