Hello. I used to spend all my time on the Thyroid board as I was dx'd with Hashimoto's 18 months ago. I also have vitiligo and psoriasis. I have seen many Endo's and Rheumy's and just started with a new one. After tons of blood work with a slightly positive ANA and LAC, we can't quite get to a solid dx of anything but the Hashi's, yet I am SO symptomatic with swollen elbows, facial puffiness, hair loss, weakness, malaise. On Synthroid 75 mcg and my numbers are all good. New Rheumy started me on Plaquenil and we'll see how my psoriasis fares. Going to the eye doc this week for the baseline Plaquenil exam. Hopefully, psoriasis will not made worse. She thinks this may calm my autoimmune "potpourri". Do any of you have a similar story or experience with Plaquenil and psoriasis - OR just simply being a huge autoimmune mess with no diagnosis? This has been an exhausting journey as most of you already know I am sure! Thanks so much.
I don't have psoriasis, but I know what you're talking about. There is a diagnosis called Undifferentiated Connective Tissue Disease, UCTD, thet my rheumy uses. You feel like crap but don't meet the diagnostic criterion of a specific autoimmune disease. It can be treated as any other autoimmune disease. The good news being that it oftimes never develops further into something specific. I've been on plaquenil for a number of years now, and found very few problems with it, other than a slight change to my hair colouring. I believe it has really helped control my symptoms and flares. I'm also on methotrexate, but might be able to stop that soon and just rely on the plaquenil again. I too have Hashi's and am on synthroid, btw. I am glad that your symptoms are being treated, even without a disease name, and that's the important part.
The Following User Says Thank You to luca689 For This Useful Post: Frances Kate (10-18-2011)
Sadly, I am not exactly unclassified any longer as I have CREST, but very mildly. And again, plaquenil definately helped me, but I wanted to let you know that it does take a while to be fully effective. So wishing you all the best!
I can definitely empathize. I have Celiac Disease but my rheumatologist is treating me for some sort of Sjogrens/RA/Lupus/Psoriatic Arthritis/Ankylosing Spondilitis over lap. She said I have little bits of all of them. I guess we just have to be reassured that they are treating us for our symptoms even if they can't make a firm diagnosis. Good luck
Plaquenil, Doxycycline, Meloxicam and Prednisone for emergency flare ups. There was some talk about Methotrexate, but my liver function has been high for the past two months. So until they work out why/get it back to normal, Methotrexate is out of the question, apparently.
Just wondering....what exactly are your symptoms? I have hashis also but i have also beej suffering with lots of other symptoms with no diagnosis. I have tingling on the top of my head and a balance problem. Lots of other things also. To many to list right now. But i sometimes feel very sick. Almost like a long term viral or bacterial infection. It all started with getting sick with just a bad cold and maybe an upper resp infection and have been ill ever since. I have been through years of testing. Everything comes out pretty normal. Anything that is not 100% does not relate to my symptoms (i.e. kidney stone, gallbladder polyps, etc.) no relation to the way i feel. I would love to know what your mixed bag entails. thanks. LaLa
Also with the tingling on the top of my head and the feeling off balance i have neck pain and my skull bones hurt to the touch. I have been tested for ms and lyme. they were both negative. I have been to reumys all tests negative except the last test showed a slight elevated reumatoid factor but very slight. The dr said she is not worried about it. My homocysteine level was high and she is treating me with supplements for that.
My symptoms- nose ulcers, headaches/migraines, dry eyes, dry mouth, Raynaud's, goiter, fatigue, nail pitting, splinter hemorrhages, vascular rashes (petechiae), sun sensitivity (solar urticaria, gives me migraines, nausea, swollen joints, fatigue and a bruised like rash), low blood pressure/fainting (80/50 lying down, drops further when I stand up), weight loss/lack of appetite, memory problems, flu-like feeling and swollen/stiff/sore joints (arthritis in toes, knees, hips, sacroiliac joints, shoulders, wrists, MCP and DIP joints in my fingers)- I think that's everything! Oh and my liver function test has been elevated the past 3 months.
I've got a diagnosis of Celiac Disease and asthma. I think I may have a thyroid thing going on too with my goiter, but my TSH is normal and my GP said let's tackle one thing at a time.
Are any of your symptoms similar? Do my symptoms suggest anything to you? Are you being treated for anything? Or do they not believe you?
My blood tests are pretty negative, my ANA has been up slightly in the past but it's now negative. My compliment levels and all the specific antibody tests and ESR/CRP are all normal. My rheumatologist wrote in my report "her blood tests are very negative"... Lol is that like 'very pregnant'? All my symptoms were dismissed until I had the bone scan that showed the arthritis and I saw an ophthalmologist who confirmed my dry eyes (although my Schirmer test is normal).
That's so frustrating. The tingling sounds neurological. How do they test for MS? I know some of the Lyme tests aren't accurate. I live in a part of the world that doesn't have Lyme so that wasn't tested for. I have read that about 10% of the general population test positive for the RF test. It's so annoying, they seem to rely so heavily on the blood tests, but then even when they are positive they don't seem interested!
Lala, it's FrancesKate here. I have the same sympoms; imbalance, constant flu-like feeling along with intermittent puffiness around my eyes, swollen elbows. None of m bloodwork is conclusive but reveals possible bits and pieces of many things. New Rheumy has me on Plaquenil to try to "calm" my overall autoimmune response. She feels it is likely we may never identify anything more than the Hashimoto's. It's completely frustrating, and I have high hopes that I will have some relief when the Plaquenil kicks in in a couple of months. Like you, I was healthy until I had a respiratory infection from raking wet leaves. Her theory is that kicked off the whole process that led to my Hashi's dx. I wish you well. Hang in there...
WOw. You have lots of symptoms. I thought i was a mess. How do you function everyday? I was going to suggest lyme to you but you answered that question already. I am at a loss with what you have. Your blood pressure is so low that I can;t believe a doctor can't find a reason for at least that. Have you searched for causes of low blood pressure? During my illness of the past 6 years i had low pressure at one time 90/50 but it is normal now. Have you tried going to another rheumy? I know drs go by blood work alone, but sometimes things don't show up in the blood work. What about a natural dr. they go on your symptoms not your blood work. As for my situation, i have been to four different neurologists already. I have taken many tests and everything shows normal. In the meantime my head tingles off and on everyday for 2 1/2 yrs. That did not start at the beginning of my illness. At the beginning i got sick and then it went into like a CFS type of thing. That part of it kind of got better and now I am left with tingles, balance issues, neck pain and skull bone pain. also have had lots of stomach issues. I was treated for candida which can cause lots of problems also. Have you checked into that. Candida can cause many, many issues. You might want to google that. I hope you get answers soon and that you can get your life back. It is very frustrating and depressing.
Keep me posted. LaLa
I see hat you are from Tampa. I was just there last weekend. My son goes to college there. UT. We had a really nice weekend. weather was great. You sound like you are in a similar situation to me but you dont have the tingling. I also have stomach isssues and some joint issues also. When you say you have balance issues, what exactly do you mean? Do you fall? I don't fall i just have a feeling of not being flat. It is hard to describe. I feel like i am walking on a slant. i don' t feel confident anymore when i am walking with high heels. I feel like i might fall but i don;t. I also sometimes get sensations in my ears. I have been to a few ent's and only one said that my tubes are off and that i might get fluid in the ears sometimes. I do sometimes feel ear fullness. I have been to many neurologists for the tingling and also no answers. It all started with a virus or bacterial infection 6 yrs ago as i told you before and just never recovered. I am very depressed that i have to live life like this everyday with no answers. I just want to feel good again. Every event is a chore instead of a joy because of it. I had a nice time in Tampa but not as good as if could have been if I felt normal. How do you manage everyday? Has your life changed since the illness? I will check into that new med you are taking also. I hope it helps you. Please keep me posted. LaLa
Lala: Thanks for the reply.. I feel like a mess haha. I guess I'm fortunate that I seem to have more good days than bad days and I'm able to push through the bad ones. I did ask my doctor about Lyme, but she said there's never been a diagnosed case in New Zealand. I guess that doesn't mean it's impossible, but highly unlikely. And I'm also on Doxycycline, which is one of the treatments.
I've had low blood pressure for a long time. It seems to be lowest when my symptoms are at their worst. My rheumatologist just said "I wish my blood pressure was as low as yours".... Thanks doctor.. That's super helpful!! I bet you wish you fainted when you blew your nose or stood up too quickly!! I haven't really looked too much into causes of low blood pressure. I had done a bit of research on a condition called POTS, but like my GP said, tackle one problem at a time! So I'm doing the Lupus stuff first, then I'll work on the thyroid stuff, then the blood pressure... Gees what fun...!
I've seen four rheumatologists. The first one said Fibromyalgia and didn't order any blood tests. The second one said it was emotional and my ankles were twisted and sent me to physiotherapy. The physio said to go back to the rheumatologist because I have fluid under my knee caps. So I went to a new rheumatologist who said she thought I had Fibromyalgia but would order a bone scan to "rule out" arthritis (i.e. she was expecting nothing). She said "you definitely don't have Lupus". I got the bone scan done and it showed the arthritis. She rung me and told me and said that she thought I had Lupus and Sjogren's. I then had my next appointment but couldn't see her again, so I saw a different guy (who made the blood pressure comment) and said that my blood tests were "very negative" (like very pregnant....!?) and he thought I had Psoriatic Arthritis, I have nail pitting, arthritis in the DIP and sacroiliac joints and that's characteristic of PsA (although I don't have Psoriasis!). I'm going back to see the rheumatologist who said she thought I have Lupus and Sjogren's from now on!
I haven't really thought about a naturopath. I did see one a few years ago and she was really strange haha.
It's so frustrating when you go to so many different specialists and you get no answers. Have they given you any diagnosis? I've found once you've got a diagnosis like CFS and Fibromyalgia they won't look outside those diagnoses. Any symptom you do have they'll just say it's FMS/CFS even when it doesn't fit.
Thanks so much =] keep me posted on your progress too. I hope they find some answers soon!!
LaLa, hello. Funny, I moved to Tampa from NY 10 years ago! I miss it. My imbalance is really a feeling of being drunk - most of the time. High heels are a challenge. I have learned to adapt, but it's not fun. I, too, have ear fullness and sometimes depth of vision issues. Primarily, it's the feeling drunk and flu-like with random swelling, especially around my eyes and elbows. Many endo's, several Rheumy's and all we can deduce is my primary Hashi's and general autoimmune inflammatory response keeps me feeling lousy most of the time. I go through the motions each day and cope as best I can. I have even learned to fake it as I am doing this week with my mother visiting from NJ! It's rotten. Early in the Hashi's I had alot of brain fog. I have learned after a year and a half of this nonsense that stress is a big trigger for me. If I overwork, get upset, I instantly start to puff up and get dizzy. I don't know how to relax and new Rheumy says I have to learn! I am sorry for your troubles...I KNOW what you are going through. I have had all the tests you have and the hardest part is trying to explain to others that you don't quite have a name for what's wrong. Hang in there and I will hope for the best for both of us! PS) I work in Tampa but live on the Gulf in Indian Rocks Beach. It's cold here today. 55 degrees! Take care of yourself and keep me posted.
Where did you live in NY? I live on Long Island. Your situation sounds a little similar to mine but not entirely. You don't have the tingling from what you are telling me. I too just try to cope everyday and just push on as if i am not sick. Also if i overstress myself i feel sicker.I think that it causes an autoimmune response also like you said. Also when i was in Tampa visiting my son I tried to act like everything was fine. I dont have swollen joints but they do sometimes feel tender. I have bone pain to the touch on the inner elbow bone. Also brain fog. But i think that could have something to do with menopause that started last year. Anyway, i am getting tired. I will talk to you soon. Take care and keep in touch. LaLa
Hello! I lived in Manhattan for 25 years - 22nd and Park. I spent alot of time on the Island and LIJ Hospital System is a client of mine currently. I do have the tingling, just forgot to mention it as my list of symptoms is long and I also "forget" things more frequently. Oh joy. We are in the same boat and I'll keep in touch.