docmartenmom

Multiple Diagnosis - Autoimmune Nightmare

24 posts in this topic

Hi Everyone,

 

My name is Lori and I am new here. I was first diagnosed with Scleroderma in 2008 by my neurologist. I did not go to my follow up appointment so did not learn I had scleroderma until 11/10 when I went back for more testing. I have had a B12 deficiency for over 2 years which requires weekly B12 shots, as well as pernicious anemia - the cause of it. In the past few months I have been to 2 rheumatologists who have each stated I have Sjogrens, Fibromyalgia, Raynaud's, and also bursitis of all knees and shoulders- one suggested lupus but tests were negative for that. The other said scleroderma as my 2008 test revealed a high result of 195 for the antiscleroderma-70 antibodies test. I have lots of gastro issues, including atrophic gastritis, pernicious anemia and Barrett's esophagus. An upper endoscopy and subsequent biopsies showed although the esophagus is still pliable, I have intestinal metaplasia in both my esophagus and stomach. At this point I feel like a walking medical anomaly and a medicine cabinet. I see a neurologist, rheumatologist, gastroenterologist as well as my main doctor. I do have an appointment with a scleroderma specialist on February 7th at the Hospital for Special Surgery in NYC, and am relieved knowing I will be going to someone who is knowledgable about this. I find all of the test and various diagnoses so tiring. My neurologist is now sending me for a cervical spine MRI trying to rule out MS due to hand tremors and numbness of my hands, arms, legs, feet, face and tongue. Can any of you tell me what your earliest signs were? I have periods of vision disturbances (like television static), go numb and painful rapidly within seconds and I never know when it will come on. I am on meds for the gastric acid, celebrex (was on nabumetone) for the joint pain, lexapro, xanax, a muscle relaxer and now the rheumatologist wants to put me on a medication used to treat Malaria. Sorry for the long post - I have been holding my worries in for months and have been finding solace on this forum. Thanks ~ Lori

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Hello Lori,

 

Welcome to Sclero Forums! I'm sorry you have so many concurrent health issues, but you'll find many others of us around here in the same boat. I hope you get a lot of questions answered when you see a scleroderma expert in a few weeks. I'm sure others will have more and better things to say, I just want to give a great big welcome, and warm hug.

 

:emoticon-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi Lori

 

Welcome to these helpful and friendly forums!

 

I'm sorry to hear that you're having so many health problems; Scleroderma is a very complex disease at the best of times so it must be very worrying for you with so much going on. It's a good thing though, that you're going to see an Sclero expert as it is very important to deal with a rheumatologist that really understands the disease. We have links to Sjogren's, Raynaud's, Gastrointestinal Involvement and Fibromyalgia which I hope you'll find interesting and informative.

 

Regarding your question on the earliest signs, I have Limited Systemic Sclero which has primarily affected my lungs, but I first had an inkling things were not right about 18 months or so before I noticed the shortage of breath and cough. I felt generally unwell and tired, had dreadfully painful and swollen joints and also bi-lateral Carpal Tunnel Syndrome which at the time I didn't realise could be a symptom of Scleroderma. I'm fortunate in that I have minimal skin involvement (merely the tips of my fingers) and because I was physically very fit I noticed the deterioration in my breathing quite soon and was thankfully referred to a top lung specialist and diagnosed quickly.

 

Now that you've found us, Lori, you will find that you're amongst like minded people who will understand how you feel. Do keep posting and let us get to know you ; here's a :emoticon-hug: to keep company with the one Shelley gave you!


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Thanks for sharing your symptoms Jo, and for the hug! I feel my case is more internal involvement and minimal skin involvement, aside from the puffy painful hands and Raynaud's attacks. I never leave home without my trusty gloves now.

 

I have been looking online and from everything I have read, I believe my diagnosis is systemic sclerosis based on my Scleroderma Antibody-70 high test results. Hoping the specialist can steer me in the right prognosis - that would help so much - knowledge is power.

 

Thanks again and be well ~

 

Lori

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Hello Lori

 

Welcome to the forums! You certainly have a lot of health issues going on but it sounds as if you're getting very competent care which is always a good thing.

 

Keep us updated and take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Lori,

 

My name is Lori too!! I have a similar story as you. I've had epilepsy for about 20 years, in 10/2008 I was diagnosed with Celiac disease and 11/2009 Scleroderma. I'll try and keep it short but I have eyes problems, stomach problems, acid reflux, joint pain, paralyzing hand pain at times and Raynauds. I'm going for a Esophageal Motility test in February to test my acid levels as my esophogus is enlarged and I have acid reflux everyday.

 

This is really depressing!! Will it get worse?

 

Lori

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hi Lori,

I truly understand how you are feeling at the moment with so many things going on but hopefully you will get all the help you need when you see the specialist soon. I too am awaiting an appointment with a specialist and have systemic scleroderma.

 

You asked about first symptoms, well mine was swollen tight hands, Raynauds, joint pain came later then fatigue. I was diagnosed in 2007 and then from then on other symptoms have joined my forever growing club then last year I was diagnosed with pulmonary fibrosis. I too feel like a walking pharmacy as I am on 25 different meds a day, some have to be taken up to 4 times a day. I also have stomach involvement, jaw problems narrowed mouth, some skin problems and I have my ups and downs.

 

I wish you well with your specialist in Feb and keep us posted how you get on and hopefully we will chat again sometime. :flowers:

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Hi Queenie,

 

Thanks for replying. I have the CREST symptoms too. My mouth is tightening too. I didn't list all my problems previously. I have some scarring on my lungs too like you. Will it get worse? My doctors aren't saying anything. It's a wait and see what happens next. I'm so tired all the time and look and feel awful. My family doesn't understand what I'm going through everyday. How do you cope with people who don't know what you're going through or negative comments?

 

Thanks,

 

Lori

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Hi Lolly,

 

Firstly, a warm welcome to these foums!

 

I'm so sorry to hear that you also have a lot of health worries. The symptoms of Scleroderma are so varied and it is a very difficult disease to diagnose.

 

Are you seeing a Scleroderma specialist when you have your oesophageal mobility test? It's very important to consult an expert who has the expertise to deal with this unusual disease as unfortunately many rheumatologists don't fully understand the complexities of it.

 

I can understand how you're feeling as I think the uncertainty of the disease is one of the worst aspects. Like you, I wanted the doctor to reassure me that all would be well, but I realise now that it was almost impossible for even my very knowledgeable consultant to tell me exactly how the disease would progress. Please don't worry about other people's negative comments; because Sclero is so unusual it is almost impossible for the average person to realise the pain and distress you're experiencing. We do have a link to emotional adjustment which I hope you'll find helpful. However, now you've found our forums you'll find that there are lots of new friends who do fully understand what you are going through.

 

Do please post again whenever you feel worried and upset and let us know the results of your acid levels test.

 

Here's a welcoming :emoticon-hug: for you.


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Lori,

 

The negative comments are really hard to deal with and sometimes I find it really hard and begin to question myself and I can be a bit snappy, but I was given a piece of advice on here about a theory called the spoon theory to help people understand a bit better which I found very useful and easy for people around me to understand. Because there are so many uncertainties with this disease I often found myself saying "Well, we don't know" and then thinking even more negative thoughts; however with the spoon theory you seem to cover everything and there are no questions you need to answer or leave yourself in the predicament of not being able to answer as you don't know the answer yourself because all you are told is "time will tell".

 

Here's the link for the spoon theory which I found particularly useful for close friends and family as I had a problem that as soon as I said how bad I really felt they would all fuss and give me no room to breathe.... only because they care so much, but after giving them the spoon theory they backed off a bit and I can at last be honest.

 

As for people with negative comments then they are not worth taking the time to explain to, so I just don't bother anymore.

 

Love queenie :emoticon-hug:

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Hi Lori

 

I just wanted to welcome you as well although I am a little late on this thread. Good luck on Feb 07th! I hope you keep us updated on your specialist visits. Unfortunately, sometimes it does take a long time to put all the pieces together.


Sending good wishes your way!

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Hi Queenie,

 

Thanks for the support and advice! I'm feeling better today. I will read all about it later.

 

Love,

 

Lolly

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Hi Jo,

 

Thanks for the advise. I do have 4 doctors: a G.I., a rhuematologist, a dermatologist and a lung specialist. I'm happy with the lung specialist and dermatologist. I will keep you updated on the results for the acid levels.

 

Thanks Again,

 

Lolly

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Hi Lori,

 

Welcome from me too!

 

The possible symptom list for scleroderma reads like a Chinese menu: pick one from column A and two from column B and an awful lot of us know more doctors than any other group of people! It does get tiring, doesn't it? The upside is that you can meet an awful lot of nice people along the way.

 

I noticed in your first post that you said you hadn't kept a follow-up appointment in 2008 and so hadn't learned of the diagnosis. I have the Mother Duty today ( :lol: ) so I'll do the finger-wagging and tell you that it's really important to keep appointments and agree to reasonable tests and consults. A lot of things can be treated more effectively if they are caught early.

 

The malaria medication you mentioned is probably Plaquenil (hydroxychloroquine). Lots of us take it and I, myself, have found it helpful with pain and fatigue.

 

Good luck with your appointment. Let us know how it goes, OK?

 

Best wishes,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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