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  • Mixed bag/Autoimmune mess...

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    Old 10-29-2011, 06:35 AM   #16
    lala52
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    Re: Mixed bag/Autoimmune mess...

    Francis:
    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

     
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    Old 10-29-2011, 06:16 PM   #17
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    Re: Mixed bag/Autoimmune mess...

    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!!

     
    Old 10-30-2011, 04:50 AM   #18
    Frances Kate
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    Re: Mixed bag/Autoimmune mess...

    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.

     
    Old 10-30-2011, 08:12 PM   #19
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    Re: Mixed bag/Autoimmune mess...

    Francis:
    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

     
    Old 10-31-2011, 04:22 AM   #20
    Frances Kate
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    Re: Mixed bag/Autoimmune mess...

    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.

     
    Old 11-01-2011, 08:24 PM   #21
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    Re: Mixed bag/Autoimmune mess...

    Francis:
    Hi: How are you doing? Your condition sounds like an autoimmune situation. i did not know what vitiligo was but I looked it up and it says that it is autoimmune. That, plus all the other things put together sounds logical. How are you doing with that new medication? Also where exactly is your tingling? Is is on the top of your head? What about neck pain? Take care. Hope you are doing better. Although i only spoke to you two days ago. Probably no change. I feel like i will never get better. What a way to live. LaLa

     
    Old 11-01-2011, 08:41 PM   #22
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    Re: Mixed bag/Autoimmune mess...

    I saw an 'oral diagnostic' professor today and she suggested Behcet's Disease. Not sure if you guys have heard of it (I hadn't!). Apparently it's quite rare in non-Middle Eastern people (I'm of English/Scottish descent). Don't Wikipedia it if you don't like gross photos. It might be a possibility for some of you guys with autoimmune symptoms, especially being rare it may have been over looked!

     
    Old 11-09-2011, 12:47 PM   #23
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    Re: Mixed bag/Autoimmune mess...

    Hi Lala, I think I already went through my long list of symptoms but I have to say, I am so happy to know I am not crazy for feeling this spot of tingling on my head too....Has anyone ever told what that might be??/
    Ronda

     
    Old 11-09-2011, 12:58 PM   #24
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    Re: Mixed bag/Autoimmune mess...

    I forgot to mention the brain fog or what I think is pretty bad memory loss, ringing in my ears or feeling like I am under water. I am 45 years old and feel like I am 80.. I have hope that this will not be forever. Thanks for sharing
    Ronda

     
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