Worst case ever?

[Tuurre]

Hi

Sorry if my english is poor

Im new here, have read on the forum for a while now, youre so kind to eachother 

I'm a 40 year old guy from sweden ive been very ill since 1998 from day one!

I believe im one of the worst cases getting primary sjs in sweden!? Got polyneuropathy all over my body  and a lot of brain damage that affected all my senses, my personality changed, felt demented, siccasyndrom, blepharitis, fever everyday for 10 months and much much more symptoms all from day one!? Everything has remained 24/7! but the fever, since 13 july 1998  i never recovered from that day, been on sickleave 12 of 14 years now.

Had a job, my own flat, friends, played soccer, girlfriends all vanished in a moment. The doctors in sweden gave me all sorts of diagnosis, burnout, anxiety disorders, burning hands/feat syndrome, adhd , you name it, i lived at the doctors my first five years but no one thought of rheuma or Sjogrens. Did all other tests, how could they find anything? i was a 26 year old elite soccer player when i got ill.

Thought it was hiv at first a lot of negative tests these years, finally they made a rna-test 2 month ago negative aswell, a guy working with the hiv center in stockholm said to me you have Sjogrens and i was like what is that? So my sjs seems its even worse than hiv!? After the five years  i went on with my life despite all symtoms, almost all of my symptoms remained and some got worse, the dryness, intestinals, eyes, got two iritis and ibs diagnos and 2 years ago i started getting even worse, i was already extremley fatigued but this was another leavel!

One year ago my lymph nodes started swelling all over, and now i got purpura,  have had burning all over last years and now it has suddenly dissappeared!?, strange feelings in the bonemarrow, problem eating, swollen tongue, back/cheast/testicle/abdominal pain, headache, brain problems/burning, dizziness.

 I've had like 20-30 symptoms these 14 years but now they are like 40-50. I still havent got a diagnos!? i had 0,9 and 0,1 at schirmers test , have no autoantibodies! Did the lip biopsy 4 weeks ago and she told me that it will take to 4:th of june!

I did a cytology last week of a lump on my throat the result came back as a reactive lymphadenitis but not malign due to the doctor but my cd4/cd8 ratio was 6, i know and feel that i have both primary sjogrens and lymphoma, leaving bloodtests this week to see the onc for the first time next friday, have read everything about lymphoma for four weeks and cant even find a needle in the....  for my favour.

The really sad part is that i come from a family with addiction problems so ive been all alone thru this for fourteen years and friends, family and others have stamped me as a hypochondriac! So with no help from the medical system or support/ understanding from anyone its likely that i am deadly ill and have a limited time. 

What are my chances if the lymphoma is spread all over?, my lymhnodes are everywhere ribcage, suprasternal notch, breast, underarms, thighs, in the groin and under my arms they are like 1x4-5 cm, im affraid its in the brain aswell cause im so dizzy and two months ago i got even worse vision problems, are there anyone that has went in remission at this stage with such an aggressive sjs as mine? with a spread stage IVA lymphoma? Have no B symptoms!?

So ive been living with a suvere sjogrens with brain damage and the health care missed me, so angry and dejected but so fatigued im tired of fighting.

I have followed Daisy1234 and i think you encourage and has such a positive attitude. A true role model.

Please i need som advice and hope at this time. Sorry if im beeing a victim here. Hard not to

Best Regards Tony 

[loulou]

Hi Tony

reading your post and you really are going through it, it can be a lonely place having sjogrens, but glad you found this site - its an amazing place to feel belonged and understood. As the other members will tell you this disease is sneaky and unpredictable.

I sure someone on here will be able to answer your post with more info than i can. My son's name is Tony, good name. Im from uk. Our health service is probably different to yours, but it was through my gp that i was diagnosed in 2003, but there are a lot of members that have negative results but still suffering sjogrens. I hope you get some answers soon, and get on the right track of getting treatment.

Wish you all the best at the ONC next Friday.

keep us posted.

x loulou

[mebog]

Hi Tony,  I'm so sorry to hear of all the trouble you are having.  Makes me know how lucky I am.

I can't give you any advise but I can and will pray for you.

There are members a lot more knowable than I.  I'm  sure you will be getting some good information.

Thinking of you
mebog

[Gayle]

Hi Tony,

I am so sorry to read this from you - I understand, we all do, how frustrating and scary and lonely this has been for you! I will send prayers for you! I think from much of what I have read here, there are many who have struggled with Lymphoma and severe SJS symptoms, such as you and been brought back to a more healthy, livable life! There is always hope! You will get much good information here and please know we are always available to listen and you can vent with us. You will also be able to share your successes and one day, you will do the same for another! Read as much as you can so you can know what you need to ask your doctors. Write down your questions and if possible, take someone with you who can help with questions, take notes on the answers, etc.  Good luck with the Onc and remember we are here for you!
Prayerfully,

Gayle

[Tuurre]

Hi

Thanks all of you for your kind words.

I'll need it, can only pray that it's only Sjogrens that's doing this to me.

Hugs/ Tony

[cremer]

Hi Tony,

I don't have a magic wand to make you better but just like you to know I'm thinking about you and hope June 4th brings a diagnoses for you. After 14 years with no diagnoses what medication have you been put on?

[Tuurre]

Hi Cremer

See that you're going thru a lot aswell, wonder who came up with this practical joke with our bodies, it was like 60% of life dissapeared over night

I starded with antidepressive medication 15 Mg cipralex 3 month ago, knew rough time's were ahead that's it and meditation last year, it was during meditation i recieved the answear, hey dude you're very i'll!

I'm afraid that the lymphoma did start a couple of years ago and that it has spread now, you know when you been so ill for fourteen years, i did'nt pay attention when my symptoms got worse, in sweden we have these general doctors and they are very general
I always knew that i was very ill but they never sent me to the right specialists so here i am
They tricked me into believing it was a burnout, i never belived them but i was to fatigued and on my own to fight the system.

I've read that the lip biopsi can show negative despite you having psjs, what do i do then?
I'm going for a ct of neck, cheast, stomach on mon-tue to see if i have enlarged lymphnodes, which i already now cause they're everywhere. I  believe i will get a lymphoma diagnose prior psjs

Do you or anyone else know if it's possible to get some remission if you have a spread lymphoma?

I wish you the best and hope you manage with all you're medical illnesses and thank's for asking.

Best regards Tony

[cremer]

My symptoms compared to yours are very minor, mines mainly just constant fatigue and joint ache especially lower back, knees, and elbows. I have numerous other problems but one of them is a very low white blood cell count, my last one was 2.4. I also have a low IgM level and my rheumy wants me to see a heamotologist to see if I need a bone marrow biopsy, still waiting on that one.

How low is your WBC count?

I also have a few swollen lymph nodes when I'm going through a Sjogrens fair. Do you also get lots of colds/flu, I'm aways Getting colds and feeling run down.

[Tuurre]

It seems this mr sjogren is very individual among us!
For one example i have no joint pain and my mouth is dry but ok, but i have almost all of the rest of symptoms.

I believe my wbc was a bit high in feb and march but now it's ok 7,6!? I have the inflammation marker i dont know what you call it in english sink? In swedish it's s?nka! It has been a bit high feb 19 and now 14.

My gammaglobulin was ok! but i read that the total can be good but you can still have low cryoglobulins!? Which is bad i believe!? Have purpura!

How do you read all of these numbers? Can you tell anything from them?

I was an elite athlete when i got ill, believe my numbers are ok comperad to the general population but propably a disaster if you would have compared them with where i were before getting ill, just a thought.

I dont know what a flare is, have felt like i've had a constant lowgrade flu for fourteen years, have'nt had a single bacterial cold, it's like my body is constant working against everything. All colds that was normal dissapeared and just new stuff is happening!? Havent had high fever one day for fourteen years like i used to have a couple of times per year instead i have low grade fever or under temp. nothing is working in this body, have had to rinse my nose everyday cause its totally dry with these yellow flakes that aswell for fourteen years, there are so man disabling things you just want to jump!!!! But i can't have a younger brother he's 27 and i'm his idol. I would'nt do it anyway, i loved life but these years have been a long nightmare living in an alien body!

Please tell me if you now the numbers if they indicate something!?

I dont think you can compare, It sounds like youre going thru a lot aswell

[Gayle]

Hi Tuurre,

I am sorry you are going through so much but know there is hope to get back to a more normal life. Being an athletic previously is surely a benefit for you. There are several athletes with this mess. One is one of the William's sisters who play tennis and there is a pro soccer player who has Lupus and Sjogrens - google it!  Also, there is much information on the web about lab values and what they mean. You should try googling this information as your labs may use different methods than ours. I really don't know. Sending prayers for your healing and strength! If your brother is near you, have him go with you to the Dr's and hospital to help take notes, etc. He will be a great source for you to get the information you need.
Gayle

[sewandsew]

Yes, you sound like the worst case ever.  I am sorry you are having such problems and for so long with out help.  Most of us with Sjs were not given a diagnosis for many years.  In my case 30 years. 

Sjogren's is a common illness but seldom diagnosed.  Someone can correct me but I believe there are more people with SJS than with lupus which is a more familiar disease.

You have come to the right place.  We can't improve your condition but perhaps we can help you otherwise.

I pray will pray for you, if that is ok.

[cremer]

I don't know much about numbers , I do know that I'm one of the lucky ones in that my Sjogrens was detected because I have both the SSA and SSB and my ANA was 1:6400 so very high.

A lot of people are zero negative and have no markers, sometimes even the lip biopsy comes back negative, these poor people can take years to be diagnosed, maybe you fall into this catorgry.

I'm surprised your rheumy hasn't put you on Plaquinel yet.

[Tuurre]

Thanks for your support and thinking of me and eachother.

In sweden they want to have a diagnose before giving medicine. So no plaquenil yet.

So depressing when nothing works with your body, the worst part has been the polyneuropathy, massive burning in the palms 24/7 and after reading here i now know that i got AIED at once and my eyes its another story spots all over in the vision field, these blurry lumps and sometimes it stabs like a knife in them? Something happened with the optic nerve aswell. The strange part is that i got all of this over night, like i said 20-30 disabilities at once. That never whent away.

Talk about being betrayed by your own body

Hugs to all of you.......

[mshistory]

I'm so sorry you are struggling to get treatment. My blood work is highly suggestive of Sjogren's too, but like you, I have tons of other problems but never had a dry mouth or dry eyes until starting anti-depressants last year! I've been on Plaquenil for a year, but it has not helped, and I'm starting an immunosuppresant now.

I hope you are able to find some relief and a good treatment soon.

[Tuurre]

Wish the best for you and hope the new meds will work out for you.

Thanks all for the strength it gives being able to share this with people who really understand.

Have had two good days now, before having three bad months and it's partial your merit.

Know i'll get the lymphoma confirmed mon-tue after the ct, but in a strange way i felt so much love today from people, for an example i met my "semi-girlfriends" mother today and she is here from Iran for the first time in seven years visiting here daughter and she was all about love, an amazing human being this will propably sound strange but it was like i met god thru her and after that everything feels fine although i know i'll get the lymphoma diagnose. It was like i accepted life, my destiny and it's ok.

As always hugs to you all!