Author Topic: Hello all, I'm new here.  (Read 2785 times)

Hypermobius

  • Guest
Hello all, I'm new here.
« on: August 10, 2010, 11:57:20 PM »
Hello all,
My name's Alfonso and I was recently diagnosed with Sjogren's syndrome about 3 weeks ago (at the age of 32) after a long journey of gradually worsening symptoms. It has been the most difficult time in my life, but an odd sense of relief overcame me when I found out it was Sjogren's. For the longest time, I had thought the stress of returning to graduate school was simply taking its toll on my body with the constant fatigue. I am currently in the process of finishing my masters in medical physics and up until this point have had a very difficult course load. Naturally my curiosity in how all things work, drove me to research everything I could about this affliction and led me here. It is so relieving to find that there are people here with very similar symptoms as myself (including dizziness, difficulty in the morning, nausea, overheating, sensitivity to smells...etc). It's almost like it's proving I'm not going crazy because some of my symptoms are so erratic and off the wall that they are hard to believe.
Case in point, I can't stand lemon in my water....the taste makes me sick (even if the restaurant simply puts the lemon on the glass)..or the fact that I have to drink ice cold water all of the time...or I can only drive after my 'morning sickness' passes...etc..

It all began for me in January of this year. I went to the emergency room after a sleepless night of vertigo, shaking, fever, chest pains, nausea, and a splitting headache. At the time, I was diagnosed with acute sinusitis prescribed antibiotics and sent home. Ever since that point my health took a turn for the worse. It began slowly with strange nausea and vertigo after drinking strong coffee. Then it was anything with caffeine, then anything acidic. I went to the university health center numerous times complaining about the motion sickness and nausea while driving, my bloodshot eyes, dry mouth, head congestion, etc.  The one thing that those visits helped me eliminate was all of the symptoms due to my numerous allergies. One thing in particular was that I was allergic to peanuts, which up until that point was one of my favorite things. I believe it was the Sjogren's that intensified all of my allergic reactions such as the acute dizzy spells after eating peanut butter, for example. The bad part was some of the drugs that they began prescribing to me were making my symptoms a lot worse. The most vivid example was the first day I took meclizine, for nausea. After just one dosage, that day became by far the worst presentation of all of my sjogren's symptoms including that which the medicine was supposed to alleviate...intense nausea. So I decided at that point to see another doctor, one who luckily sent me in for an extensive battery of blood work. The blood work confirmed ANA and SSB positive as well as a list of all my allergies. So here I stand freshly diagnosed...still awaiting an appointment scheduled for the 24th of this month at a rheumatologist. No treatment as of yet for the Sjogren's..just Claritin daily for my allergies.  I have learned so much from the topics on this forum and hope to learn more in the time to come.....after all it is my biggest hope that I can, despite this condition, continue on my path to become a doctor myself after completing the PHD program for medical physics. Hopefully in due time I can be as much help in the future as some of the people here on this board

Carolina

  • Hero Member
  • *****
  • Posts: 5824
  • —if it ain't one thing, it's another." Roseanne R.
Re: Hello all, I'm new here.
« Reply #1 on: August 11, 2010, 04:43:32 AM »
Welcome Hypermobius to Team Sjogren's!

A rare and special group it is, too!

Yes, it is a relief to find out what all the 'stuff' that's happening to you is about, even when it's a rather puzzling syndrome that keeps us all guessing!

But there are methods and medications to relieve your symptoms, and possibly address the progression of your disease.

The added thrill of new allergies and bizarre reactions to drugs that you hope to help you seems to be part of the process for many of us.

Add your thoughts and experiences, share your frustrations and difficulties, ask your questions.  Someone here will relate, that's for sure!

Keep us posted.

Welcome and kisses,

Elaine
Female-Elaine,78-CVID-pSJS-IC-PN-CAD-Osteoarth-SFN-Knee/Shoulder Degeneration-SIBO-Act.Purpura-Tinitus-Meniere's-Hiatal Hernia-Achalasia-Hand Surgeries, UTI's-Braces/Walker-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-D-Mannose-NAC-Omega 3-Naltrexone-Esomeprazol

Katybarstool

  • Hero Member
  • *****
  • Posts: 3994
Re: Hello all, I'm new here.
« Reply #2 on: August 11, 2010, 01:45:44 PM »
Hi Alphonso

Welcome to the family. We have a few young male members, so I'm sure some of them will pop in and say hello.

I'm sorry that you are having to join us but, as you say, when you are a doctor, maybe you will be able to help people with this misunderstood condition.

Kathyx

Scottietottie

  • Global Moderator
  • Hero Member
  • *****
  • Posts: 9205
Re: Hello all, I'm new here.
« Reply #3 on: August 11, 2010, 05:26:45 PM »
Hi Hypermobius  :)

Welcome to Sjogren's world.

I'm sorry this has all hit you so young but it's good you have a diagnoses. You are in a good position to educate other medics too!!

Even when it comes as a relief to get a 'label' it's still quite hard to take. Acceptance does eventually come however.

I hope you find this site useful.

Take care - Scottie  :)
http://sjogrensworld.org/   (our home page)
http://www.sjogrensworld.org/chats.htm   (find our chat times here!)
https://kiwiirc.com/client/irc.dal.net  (way to chat + nickname and #Sjogrensworld)


Never do tomorrow what you can put off till the day after tomorrow!

Patze

  • Hero Member
  • *****
  • Posts: 6705
Re: Hello all, I'm new here.
« Reply #4 on: August 11, 2010, 05:54:26 PM »
Hi Hypermobius,

Let me also welcome you to the SJS World and family.

I'm also saddened to see you here, but I'm sure glad that you've found us! 

Do look around when you can as there is lots of information to be found by using the search engine located in the upper left hand of the page.  If you can't find what you're looking for, don't be shy and ask away as there is usually someone about that just might be able to help.

Hang in there and I hope that you feel better soon!

Take care of yourself -

Patze
Our home page  http://www.sjogrensworld.org/index.html
Live chats  http://sjogrensworld.org/chats.htm

Everything has beauty, but not everyone sees it - Confucius

The important thing is not to stop questioning ~ Albert Einstein ~

Sero Negative Queen

lynnmarie219

  • Guest
Re: Hello all, I'm new here.
« Reply #5 on: August 13, 2010, 05:12:07 PM »
Hi Hypermobius and welcome to Sjgorens World from me too!

Sorry you have to join our ranks, but thankful you found us so you can get as much information as you need as well as being able to share your thoughts and experiences here with us as well!

And if you do go on to become a doctor....you can help break some of the ignorance that is out there! It is slowly changing thank goodness, but there are still many people in the medical field that know very little to nothing about sjogrens! And if you become a doc.....we can all transfer to you as well because you will be a true expert!  ;)

Hypermobius

  • Guest
Re: Hello all, I'm new here.
« Reply #6 on: August 17, 2010, 12:47:33 AM »
Thanks everyone for the warm welcome. I don't want to jinx myself but I'm happy to report I may be heading towards an upswing in my symptoms. The one thing that plagued me daily was driving the 15 miles to the university where I work. Usually I get extreme motion sickness, very dry mouth, dizziness..etc...but today was the first day where I was able to drive to and from school without much problems (compared to recent days). Maybe all of the life changes I have made since being diagnosed a month ago are finally coming into fruition.  ???

In that amount of time I have given up alcohol, all candy bars, caffeine, all nuts, sodas, teas,tomatoes, citric fruits, most of my favorite foods, sweets in general, and probably the most difficult thing...gluten...which is basically in about 80% of the things you can buy at a regular supermarket. At times it's been difficult, but I finally had a day today where I felt 80% of what I used to be. To be honest I really think the 500 mg acetyl L-Carnitine/2000 mg Fish oil/200 mg alpha lipoic acid combo of daily supplements really, really helped out. I can distinctly remember feeling as my whole spinal cord was ablaze with what felt like general inflamation, until I started taking those 3 supplements. That in conjuntion with my new diet I have hope that I can resume my studies in the fast approaching fall semester.  ;D