Went to the Neuro yesterday

[opie74]

Hello all, I just wanted to give an update.  I went to my Local Neuro yesterday for a routein 6 month visit.  He was also checking on the progress of the last relapse.  I had steroids just over 4 weeks ago.  I have some lingering symptoms, but things are improving.  

We discussed that I have had a sinus infection since August.  He checked my IgG level.  He also told me no less than 4 time to go to my ENT, NOW.  I have an appointment with the ent tomorrow.  The solumedrol allowd me to catch the virus that my baby had.  Combine that with a sinus infection that has already survived 3 rounds of antibiotics and well I ended up in the Inturnests office.  I wasx only able to see the NP that day.  She gave me biaxin.  I stayed sick, with green smelly junk.  Three days after the Biaxin was gone, I am right back to square one.

Neuro thinks that the lingering MS symptoms are due to the lingering infection.  I have always been one to catch everything.  Any body else?  I have had staph more times than I can remember.  The last two were MRSA.  Anybody elseseem to "cary " an infection like me and Staph?  Or do any of you catch every little virus that comes around?  I am on Gilenya.  But this has been going on since i was 11.

Ann

[opie74]

My IgG test was normal.  I am trying not to get discouraged, but my face has hurt nearly every day since late July or early August.  At leist, the nerve pain from the MS is quiet at the moment, it is just the sinus.  I took Naproxin 5 hours ago and can't have any more yet.   I think that I am goint to stack it with Tylenol.  Thursday, my feaver went over 100.  It has not done that since I had influenza 20 years ago.....

I hope that I get some more meds tomorrow.  I told my husband today that it is about time for me to hear the lecture of why we take DMD's again.  They really mess up your quality of life in the presant.   Yea, I know that they are for the future hope, but darn it, I am sick og beigng sick.  I almost never cry or feel sorry for myslef, but I am definately down about all of this.  It is almost as depressing as my uteris almost falling out last Christmas after the baby and having to wait until May to get surgery LOL!

[Sarahsmom46]

Did you ever get the results for the IgG test?  It would be interesting to see if you levels were either high or low and  if the gilenya had any impact on the results.  You are still taking the gilenya, right?  

This past 6 months have been terrible then good and now back to terrible.  Don't give up, hope they will get this straightened out.

Julie

[Lulu54]

don't give up and get discouraged - eventually your docs will find the right antibiotics to knock this one.

[opie74]

Ok, sunday after the "surgery"  I was feeling good.  Wednesday, I wnet to the Y to work out.  Wednesday night, I had a feaver.  i have now been sick AGAIN for a week.  My "followup" is tomorrow.  I think that I need antibiotics again :-(

[opie74]

Thank you all.  I had forgotten to use the Afrin before the rinse.  I am also using Tobrimician (sp?) in the rinse.  the doc told me to put bactroban on a q-tim and run it up in there as far as I could.  Since i had surgery on my turbinates a few years ago, The whole darn thing will go in HA HA!

Getting some releif tonight.  I decided to lean my head back off the bed and rinse my sinuses.  It got to the hard to reach laces, and I got out a big blood clot.  AHHH  much better!

[kerrtelli]

I had chronic sinus infections for years until I had sinus surgery abut nine years ago.  Since then I have maybe one a year compared to ten a year.

Every MRI I have had reveals a Thornwaldt Cyst.  I don't know if that helps at all but I thought I would chime in with my experience.

I also use a sinus rinse the second I start feeling sick.
I also take a Claritin every night during allergy time.

Hope some of that help you after you get over this bout.  It just some maintenance advice.  Sinus problems stink.

Kerri

[jujuminx]

Congrats on being on the road to recovery!

I have found that I am able to fight off most infections but when I do get them, I really get them. It takes forever to knock them out and it def does effect my MS.

Looking forward to seeing a post from you that says you are ALL better!

Happy day.

Julie

[opie74]

Ok,  I had bilateral endoscopy with debrement on Tuesday.  There was a section of my frontal sinus abofe my right eye that was closed off and full of puss.  Glad I had the procedure, or I would just be sick again.  I am still a little swollen and such, but my MS symptoms are better.  I am happy to have a reprieve from the infection.  A culture was sent off, so I might be on more meds Tuesday.  

So, lingering hiding infection since August is the root of all the sinus, MS, and nerve problems in my tooth!  Happy to finally be at the infected ***** root of this problem!  HA!

[opie74]

I go back to the ENT tomorrow.  No feaver, but now my back hurts when I breathe deeply. I still have nasal congestion and face pain.  I know for sure that the pain is not MS related, because it is bi-latteral and I hae never had MS pain on the left.  Pray this antibiotic workes because it is the ONLY oral one that the culture reacted to.  I  will let you know ehat I find out tomorrow.

[opie74]

Update...The culture only reacted to Levaquin.  so now I am finnishing up the Bactrum and taking Levaquin.  It was in the Strep family....  Still a slight on and off feaver, and I never run feaver!

MERRY CHRISTMAS!

[Sidesteps]

Opie,

I have chronic issues with sinus infections. I have untreated allergies(my fault!)  and so nearly every time I get sick, I get an infection.

My kids also had severe asthma (with too many pneumonia cases to count) I learned a few tricks with treating it. After learning that sometimes the inflammation is so severe it's impossible to "get to the infected part" without reducing inflammation - I started treating my infections like I would asthma, with anti-inflammatory's.

So, I use Afrin to reduce the inflammation (only as needed 1 to 2 x day) then use a saline rinse to flush the gunk along with the antibiotics.  I haven't had an infection since I started using Afrin to keep my sinus passages open and rinsed out.  

The doctors have attempted to prescribe sinus steroids to reduce my inflammation on a more consistent basis but so far this method works for me. (I admit, my allergies are getting to the point I am probably going to go with the nasal steroids soon.)

Maybe try a minimal dosage of Afrin to aid this as well. I hope you feel better.

[opie74]

I went to see the ENT.  He gave me Bactrim DS, a Antibiotic sinus rince, and bactroban to put in the nostrils.  I go back on Thursday.  He took a culture to see if they could grow it and find a antibiotic that it responded to.

The pain in my sinus has now moved to above my eyes, bilatterally, so definately nt the trigeminal nerve that is affective my the MS.

I will let you know what I find out.

[opie74]

I have had sinus surgery in the past.  My neuro also ordered a liver pannel and a cbc.  My white count almost never goes up with a bacteria.  I usually don't run a feaver either.  Gilenya keeps 70 to 80 % of your t-cells in your lymph nodes.  The nodes in my neck and jaw area are swollen and sore.  I am definately trying to fight this, but I don't expect to see an elevated white count.  When I was in college, Staph nearly ate a hole in my right leg and I never had a feaver or elevated white count.  The docs did not think it was infection until they drew a PINT of puss off my ankle.

Julie, I did have a relapse.  I am getting over it, but this darn infection and virus are really beating me down.  :-(  My Inturnest is my PCP.  She checked everything under the sun and so did the MS clinic.  however, they were 3 onths ago.  I go back to the inturnest in january or early Feb., I can't remember which one. Hopefully the cbc will show something.

I will let you all know what, if anything, I find out.  I do recognize the smell of the junk comming out of my sinuses.  Like I said, I have had positive Staph tests more times than I want to count.

[sadie405]

First of all, beautiful baby in your headshot. :)
Second, have the sinus issues ever showed up on your MRIs? On my 2nd MR report following a description and number of the white matter lesions the radiologist wrote about evidence of chronic sinus disease. Strange, huh? Especially given I rarely had the symptoms. but since then it's showed up every time over the past year.

Best,
Sadie

[Sarahsmom46]

You already know about my being on Gilenya of course, so from that perspective I am getting sicker than I would normally have in the recent (pre-Gilenya) days.  Colds last longer or for me back during my first hospitalization in October, turn into pneumonia.

Definitely have your internist or PCP get your blood work checked as Lu suggested. You need more than just the IgG checked. More extensive blood work will help him/her have an idea how or why your body isn't fighting this infection.  

Why were you on steroids? Was it for a relapse?

Julie

[COBOB]

I have been through  the Bactrim DS and then Cipro route a couple of times for UTIs and sinus infections.  Most of the time, it just requires longer courses or mixed antibiotics.  Some of the bugs (MRSA, etc.) are getting much harder to wipe out.

Bob

[Lulu54]

The gilenya can lower your immune system making you more susceptible to the bugs and your body has a rougher time of throwing it off.  But I think you already know that.

Has the neuro done blood work to check your levels? I understand sometimes it is necessary to take a drug holiday to let your immune system reubuild.

Good luck at feeling better.
Lulu