Can't get a diagnosis!!

[charli]

I don't think I'll ever get to the bottom of all this!  I have been to several doctors over the last 4 years and even with positive scl 70 antibodies, all doctors just seem to dismiss me!! My legs have been swelling for the last 4 years, my face has been swollen for the last 18 months. My mouth is tight, like the vessels or glands on the inside of my mouth are swollen or something.  Along with the swelling, I have burning. tingling type pain in my legs and face.  My neck kills me most of the time.  Like I said,  I have had numerous tests.  I have even been to the Cleveland Clinic.  I was disappointed in that visit because all they did was repeat the labs and my slc 70 antibodies came back neg there.  I recently had them repeated and they came back positive again. I do not have positive ana.  The closest I've come to a diagnosis was one rheumy told me I might have Undifferintiated connective tissue disease.  He gave me plaquneil, which I only took for a week because I got sick with a sinus infection and could not get myself to take it again.  I just feel so lost.  I am very much interested in AP, have read the recommended books and even reluctantly got an rx for minocin from my latest rheumy.  I took 50mg 2x a day for the first 2 weeks and I felt like I had a little more energy, and I felt like my legs felt better but then started feeling worse.  I think it was from yeast because I seem to have a problem with that anyway.  So, I stopped the minocin for a couple of days, got an rx for diflucan, and restarted at 50 mg Mon, Wed, and Fri.  I have been doing this for a couple of weeks now.  I still don't feel so good.  I don't know where to turn.  I think if you don't have the typical skin tightening, doctors just think your crazy.  Sorry this is kinda a rambling post but I'm at work and trying to hurry.  Anyways, anyone have any ideas?  Do you think I should keep taking the antibotics?  Thanks for listening!!

[judy cash]

Charli,

Yes, for now anyway I think you should keep up the antibiotic. I'm sure others will reply to you but I just wanted to give a little encouragemant. I really believe in AP. It makes since to me that it is mycoplasm and other bugs  that are making us sick, and minicycline is  safe, so what do you have to loose. Remember in the book it talks about how you can expect to feel worse, before you feel better. It means that it is killing the “bugs”, that are making us sick….. I think “most” people have this reaction, not all. I had my worst RA symptoms right after I started AP, then I began to get better. I have been on AP for almost 5 months. And it does take time to work also. I hope this helps.

Judy

[mkbeeliever]

I would ask for a skin biopsy if you haven't had one already.  My mom's blood work did not say scleroderma and we were told she did not have it by the doctors in the hospital where she stayed for 15 days after her kidneys failed.  The only way we knew was the biopsy of her kidney said possible scleroderma renal crisis and her PCP did a skin biopsy that confirmed it.  And yes, by alllll means, keep up your antibiotics and take tons of probiotics to ward off yeast!  I hope you find the diagnosis you are looking for! Its weird, we were actually “relieved” in a sick sort of way when we finally found out what my mom had.  When a name is put on it, it's scary at first but then you know what you are dealing with and can fight like hell!

Blessings,
Michelle

[charli]

Judy and Mk 

Thank you for your replies.  I have continued to take the minocin and somedays I feel like it is working and other days not so much.  I know I have to give it time, I just wish I had a doctor who was knowledgable in all this.  Heck, I wish I could get a diagnosis.:headbang:

Mk –  What kind of symptoms was your mom having with her kidney problems?  I worry about my kidneys because my BP is high and I have swelling,  but I haven't found an ace inhibitor that I don't have bothersome side effects.  I know I definately need to get on one soon.  I go back to the rheumy who prescribed the minocin on Friday and am going to mention it to him, and also have him check my kidney function.  I have been having foamy urine recently and wonder if something is going on.

Also, you said take a ton of probiotics, my bottle says to take one a day, should I take more than that?

Thanks again for listening.  I hope your mom continues to get better!!

 

[Maz]

[user=1799]charli[/user] wrote:

I know I have to give it time, I just wish I had a doctor who was knowledgable in all this.  Heck, I wish I could get a diagnosis.:headbang:

Hi Charli,

If you'd like us to send you a list of AP Physicians for your state and the “most experienced” list, if travel is an option, we'd be happy to send it to you in a private message. Just let us know where you are.

Peace, Maz

PS I've been on antibiotic therapy for three years now and take 4 times the daily suggested dose on the side of the bottle of my probiotics every day – I use PB8 (vegetarian caps) that I buy from http://www.vitacost.com .  I take 4 PB8 caps two hours, well away from, my morning antibiotics and another 4 PB8 in the evening, two hours after my second antibiotic dose of the day.  Important not to take them close to the antibiotics, as they will wipe out the probiotics, too. 😉

PPS We have 3 very experienced rheumatologists on the AP doc list: Dr T in Boston, Dr W in NY/NJ and Dr F in CA, all of whom could help to give you a definitive diagnosis and help you with correct medications for you. Scleroderma is relatively rare to your average rheumy or MD, but these 3 docs see innumerable sclero patients every day.

[Lynne G.SD]

Hi Charli;
    I wish I did not have to welcome you  but at least you are in the right place.I had a very bad case of SD and it was not confirmed by any test as they were all normal except for my white blood cell count that was a tad off.
   I was swollen and after a while it goes down and you start to petrify.Then they daid it's SD.I only found this site once I was in bad shape and it took several years and major diet changes before I got better.I am in total remission and I am sure you will be also as you are catching whatever it is at an early stage.
    I think you had better start to read up on old posts about the miserable herx( Herxeimer's reaction) where you feel worse before getting better.Every time I would add an other antibiotic to the regimen it would hit hard and I just wanted to crawl into a hole and die.You learn to suck it up and keep going but it sure takes some doing.
                 Lynne

[mkbeeliever]

[user=1799]charli[/user] wrote:

Mk –  What kind of symptoms was your mom having with her kidney problems?  I worry about my kidneys because my BP is high and I have swelling,  but I haven't found an ace inhibitor that I don't have bothersome side effects.  I know I definately need to get on one soon.  I go back to the rheumy who prescribed the minocin on Friday and am going to mention it to him, and also have him check my kidney function.  I have been having foamy urine recently and wonder if something is going on.

Also, you said take a ton of probiotics, my bottle says to take one a day, should I take more than that?

Thanks again for listening.  I hope your mom continues to get better!!

 

Hey charli,
my mom was having very high blood pressure for a lot of months prior to her kidneys failing.  The top number very elevated.  We tried everything.  At that time her cardiologist was managing her bp meds.  We did not know at the time about the scleroderma diagnosis or what scleroderma renal crisis was.  Her ex Rheumie told her she did not have scleroderma.  And would not even test her for it.  She must have had 5 tweaks to her blood pressure medicines and not one of them was an ACE inhibitor.  Easter weekend she told me she felt like she was dying.  She was very swollen and her coloring was brown.  Swelling was in her lower extremities and in her face, especially under her eyes…She slept all the time and was sick to her stomach.  She was still peeing and it was clear and a bit foamy too.  (don't take this as you are having a renal crisis please…but I would definitely get the kidney function test done on Friday.  Print this out if you need to to show him a testimony.)  I took her to the ER Easter Sunday.  And the rest as they say is history.  She's on dialysis M-W-F for 3 hours and her life hasn't been the same since.  BUT, she's a trooper, she's a fighter and she is doing sooooo much better!

As for the pro-biotics, don't go by the package, Maz has given you good advice!

Take care and keep us posted!
Blessings,
Michelle

P.S. anyone having issues with not receiving alert emails?  I haven't gotten a Road Back email about someone replying to a post I have been a part of for a couple of days now.  Is it me??

[Maz]

[user=1335]mkbeeliever[/user] wrote:

P.S. anyone having issues with not receiving alert emails?  I haven't gotten a Road Back email about someone replying to a post I have been a part of for a couple of days now.  Is it me??

Hi Michelle,

No, it appears it isn't just you! Eva Holloway just reported the same problem. Trying to figure out what might be going on, as we speak. One thing you can do is go to “My Account” above and click on the “Preferences” tab to ensure you've got the emailed notifications box checked. Also, if you have a SPAM/Junk mail preference on your email, see if you can check to see if they are being dumped into that. That's about all I can think of for now, but appreciate you mentioning this, because it might be something we need to get sorted with the Webmaster.

If anyone else is not getting their emailed notifications, after checking their preference selections (as described above), then please let us know so we can look into this.

Thanks!

Peace, Maz

[Parisa]

Charli

In the beginning they thought my husband might have scleroderma, then that was ruled out and they dumped into undifferentiated mixed connective tissue disease while they waited for the symptoms to show their true colors.  About a year into the disease, muscle weakness pronounced enough for them to be satisfied with dermatomyositis.  Many here have overlapping symptoms with other autoimmune disease. 

At this point in time, the treatment of autoimmune disease is a slow process but it will be worth it in the long run.

[charli]

Hey Maz!  Thanks for your reply.  Yes, I would like to know if there are any AP docs in my area.  I live in Eaton, Ohio which is about an hour west of Dayton.  I'm not sure if travel is an option for me right now but maybe after the first of the year I could arrange something.  Thanks for your help!

Charli

[Maz]

[user=1799]charli[/user] wrote:

Hey Maz!  Thanks for your reply.  Yes, I would like to know if there are any AP docs in my area.  I live in Eaton, Ohio which is about an hour west of Dayton.  I'm not sure if travel is an option for me right now but maybe after the first of the year I could arrange something.  Thanks for your help!

Hi Charli,

Will send what we have for Ohio in a Private Message (PM for short) to you. Will also include the experienced AP Rheumies to whom you could travel for a diagnosis and treatment, though there is one AP doc in Ohio who should be able to manage your case when you get a diagnosis. She has RA, herself, but is in Parma, 4 hours drive from Dayton. :doh:

To retrieve your PM, just go to top right of this page and click where it will say, “You have 1 new message waiting.” 

Peace, Maz

[Elijuh]

Hey Charli,

I am a long term AP patient and I have SD…but it doesn't have me.  Just a note to encourage you on your journey.  I used the regular AP at first but now am on the Marshall Protocol…another type of Antibiotic protocol.  Please give the antibiotics time to work.  You will feel worse at first, but hang in there!

Blessings!

eli

[Lynne G.SD]

Hey Eli,my lovely little Lizzy.Sorry Michou but Eli is my first would be daughter.

How are you doing? I have really missed you and your crazy uplifting posts.How is the family and what crazy things have you been up to lately.In case you have not figured it out,Michou is also on my wish list for a daughter.Have you heard from Layne at all.You know me,always worrying about you kids.  hehehe.Drop a note when you can.
                        XXXXXXX

[charli]

Maz,

Thanks for the info.  I really appreciate it.  I was going to ask if there were any AP doctors in Indiana as I am approximately 30 minutes from the Ohio Indiana line.  I should have mentioned this earlier.   Thanks for all your help. 

Sincerely,

Charli

[charli]

Thanks to all of you who have replied and your encouragement.  This site offers me some hope and I appreciate all of you sharing your stories.  I hope you all continue to get better!!

Sincerely,

Charli

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