1. < Autoimmune Diseases

Desperate for answers

Posted by sunshine49 @sunshine49, Nov 24, 2017

So happy to find this discussion and so desperate to find out what is wrong with me. I'm so sorry that this is going to be long but I'll try to shorten it as much as I can. When I was in my twenties up until mid thirties, I had several times of numbness in my left arm, could not see out of my left eye, periodic speech difficulty, and headache. The symptoms would last for the day and go away .I had several Imaging test done and various other test and nothing was found. The doctor at the time eluded to MS but not much else was said and I have not had one of those major incidences since. About 3 years ago to date, I started suffering from extreme fatigue. I shrugged it off as being too busy and doing too much or it was from the thyroid ectomy I had. I knew something was wrong one day when I was exercising I could not get through 15 minutes of my routine. I've been exercising for over 20 years and suffered no types of injuries so I knew something was wrong . This is where the quest began. I went to the doctor and explained my fatigue and the other symptoms of lower back pain, stiff neck, hives and nauseous. I started getting allergy shots for the hives, I was sent to infectious disease and a neurologist . My ANA was borderline elevated and blood work showed slightly elevated EBV. I was then sent to a rheumatologist, endocrinologist, a sleep study, a Urologist, Gasteroligist and any test or blood work were normal. During this time I saw a gynecologist because of Irregullarities I was having and no issues were found. I also went to a cardiologist for irregular heart beats but nothing to be concerned with . This was all in the last 2 years. I have now consistently low blood pressure, ridges in my nails, pain in my back, sick stomach, unrefreshed sleep or can't sleep, I have extremely enlarged dark blue veins, the left side of my body is swollen at times ,I have had hard knots in the bottom of my foot that was hard to walk on ,joint pain, memory loss, speech impediment at times, dry eyes and random twitches in all parts of my body. To date some of the symptoms have lessened but I constantly have the fatigue, swelling and pain in joints. I still have not been able to exercise and when I get sick it's a horrible recovery. I was diagnosed with CFS but I feel I have way more symptoms than what a person with CFS has.The last thing my primary care told me to do was find a support group for CFS. I'm actually at a loss and have no where else to turn. It's been so hard to work and remain motivated when 80% of the time i feel like a walking slug.
Thanks for listening and wondering if there is anyone else having the same issues or suggestions. Thanks!

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Mentor
John, Volunteer Mentor | @johnbishop | Nov 24, 2017

Hello @sunshine49

Welcome to Connect. I’m hoping you can meet other Connect members who have similar health concerns and learn what they are doing for treatments.

Since you mentioned you had borderline ANA, I’d like to start by introducing you to a few members with very similar conditions. Please meet @cmtg, @pinkmk, @aman_23_23, @mommaj, @tljam, @whitechinacat, @palscoreen, @terryblink, @pinkstar, @rebo, @v1crew, @jewel8888, @tbeckys, @WendyAnne, @559purplepatty, @atorset, @beff2468, @taterjoy, @kanaazpereira, @lisabeans, @wottone, who I’m hoping can offer some information that may help.

You may also want to take a look at the following discussions:
– Undiagnosed auto immune disease: https://connect.mayoclinic.org/discussion/undiagnosed-auto-immune-disease/
– Autoimmune Diseases and Fatigue: https://connect.mayoclinic.org/discussion/autoimmune-diseases-and-fatigue/
– What happens when you have a disease doctors can’t diagnose TED talk by TED Fellow Jennifer Brea who became progressively ill with
myalgic encephalomyelitis, commonly known as chronic fatigue syndrome:
https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose
John

REPLY
1 reply
oldkarl | @oldkarl | Nov 24, 2017

@sunshine49 Aw, for Cryin' Out Loud. Sounds like we have some more doctors to educate. Sorry about all the nonsense you have been put through, but at the same time, I am not too surprised. You are exhibiting a large stack of the symptoms of Amyloidosis of some sort, probably Light Chain (AL), Gelsolin (AGel), Cystatin-C (ACys) or perhaps even Multiple Myeloma. Since there are over a thousand forms, it is pretty difficult to pin down the definite dX. So here are the initial tests for you. You can get them from MayoClinic.org in their Grand Rounds Video Series. Two of the best Videos for your needs are What the Doctor Needs to Know; and "What the Patient Needs To Know..." about Amyoidosis. The tests: 1. SERUM (not plasma or whole blood) FreeLiteChain(c) Assay from Bindings UK, available through most major clinics, and especially through ARUP Labs in Salt Lake City. If your sFLC reads 1.6 mg/deciliter or higher, you have the first danger signal. 2. 24-hr urine/protein, more than 0.5 g/day. Most local labs of any quality can do this, or Mayo or whatever. 3. Send Mayo a sample and have them test it for identification of misfolded protein. 4. Well, there are many more, but most of them will simply echo what you said in your letter. And read my own story called "Amyloidosis Version 12" as found at https://bit.Ly/1w7j4j8 Take a copy of it, or this URL, to your doctor. And also read the symptoms of amyloidosis hATTR from Alnylam.com.

REPLY
2 replies
sunshine49 | @sunshine49 | Nov 24, 2017
In reply to @johnbishop "Hello @sunshine49 Welcome to Connect. I’m hoping you can meet other Connect members who have similar..." + (show)
@johnbishop

Hello @sunshine49

Welcome to Connect. I’m hoping you can meet other Connect members who have similar health concerns and learn what they are doing for treatments.

Since you mentioned you had borderline ANA, I’d like to start by introducing you to a few members with very similar conditions. Please meet @cmtg, @pinkmk, @aman_23_23, @mommaj, @tljam, @whitechinacat, @palscoreen, @terryblink, @pinkstar, @rebo, @v1crew, @jewel8888, @tbeckys, @WendyAnne, @559purplepatty, @atorset, @beff2468, @taterjoy, @kanaazpereira, @lisabeans, @wottone, who I’m hoping can offer some information that may help.

You may also want to take a look at the following discussions:
– Undiagnosed auto immune disease: https://connect.mayoclinic.org/discussion/undiagnosed-auto-immune-disease/
– Autoimmune Diseases and Fatigue: https://connect.mayoclinic.org/discussion/autoimmune-diseases-and-fatigue/
– What happens when you have a disease doctors can’t diagnose TED talk by TED Fellow Jennifer Brea who became progressively ill with
myalgic encephalomyelitis, commonly known as chronic fatigue syndrome:
https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose
John

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Thank you!

REPLY
sunshine49 | @sunshine49 | Nov 24, 2017
In reply to @oldkarl "@sunshine49 Aw, for Cryin' Out Loud. Sounds like we have some more doctors to educate. Sorry..." + (show)
@oldkarl

@sunshine49 Aw, for Cryin' Out Loud. Sounds like we have some more doctors to educate. Sorry about all the nonsense you have been put through, but at the same time, I am not too surprised. You are exhibiting a large stack of the symptoms of Amyloidosis of some sort, probably Light Chain (AL), Gelsolin (AGel), Cystatin-C (ACys) or perhaps even Multiple Myeloma. Since there are over a thousand forms, it is pretty difficult to pin down the definite dX. So here are the initial tests for you. You can get them from MayoClinic.org in their Grand Rounds Video Series. Two of the best Videos for your needs are What the Doctor Needs to Know; and "What the Patient Needs To Know..." about Amyoidosis. The tests: 1. SERUM (not plasma or whole blood) FreeLiteChain(c) Assay from Bindings UK, available through most major clinics, and especially through ARUP Labs in Salt Lake City. If your sFLC reads 1.6 mg/deciliter or higher, you have the first danger signal. 2. 24-hr urine/protein, more than 0.5 g/day. Most local labs of any quality can do this, or Mayo or whatever. 3. Send Mayo a sample and have them test it for identification of misfolded protein. 4. Well, there are many more, but most of them will simply echo what you said in your letter. And read my own story called "Amyloidosis Version 12" as found at https://bit.Ly/1w7j4j8 Take a copy of it, or this URL, to your doctor. And also read the symptoms of amyloidosis hATTR from Alnylam.com.

Jump to this post

Thanks for the information. I will take look at it....this process has just been so frustrating!

REPLY
oldkarl | @oldkarl | Nov 24, 2017

@sunshine49 Certainly is. I was visiting with a group of Amy patients a while back. We agreed that the most difficult part of the whole process is the uncertainty of it all. The dX. The exact identification. Amy mimicking so many other disorders. What causes the pain. and all that stuff. And truthfully, inexperienced doctors, techs, nurses, and insurance people. There were several of us there, and we all agreed that the uncertainty (not about death. After a while, we no longer fear death.) but about all the other questions that never get answered.

REPLY
joanmurphy | @joanmurphy | Feb 20, 2019
In reply to @oldkarl "@sunshine49 Aw, for Cryin' Out Loud. Sounds like we have some more doctors to educate. Sorry..." + (show)
@oldkarl

@sunshine49 Aw, for Cryin' Out Loud. Sounds like we have some more doctors to educate. Sorry about all the nonsense you have been put through, but at the same time, I am not too surprised. You are exhibiting a large stack of the symptoms of Amyloidosis of some sort, probably Light Chain (AL), Gelsolin (AGel), Cystatin-C (ACys) or perhaps even Multiple Myeloma. Since there are over a thousand forms, it is pretty difficult to pin down the definite dX. So here are the initial tests for you. You can get them from MayoClinic.org in their Grand Rounds Video Series. Two of the best Videos for your needs are What the Doctor Needs to Know; and "What the Patient Needs To Know..." about Amyoidosis. The tests: 1. SERUM (not plasma or whole blood) FreeLiteChain(c) Assay from Bindings UK, available through most major clinics, and especially through ARUP Labs in Salt Lake City. If your sFLC reads 1.6 mg/deciliter or higher, you have the first danger signal. 2. 24-hr urine/protein, more than 0.5 g/day. Most local labs of any quality can do this, or Mayo or whatever. 3. Send Mayo a sample and have them test it for identification of misfolded protein. 4. Well, there are many more, but most of them will simply echo what you said in your letter. And read my own story called "Amyloidosis Version 12" as found at https://bit.Ly/1w7j4j8 Take a copy of it, or this URL, to your doctor. And also read the symptoms of amyloidosis hATTR from Alnylam.com.

Jump to this post

My husband’s family has been diagnosed with Hattr. 50% of them. My husband hasn’t been tested yet and I do not want to tell our children (30,27,21) until he is . Regardless of his outcome we will share the family history. What are your thoughts? We don’t want the 21 year old to worry her whole life.

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