confused and frustrated

[PatsMak]

This is my first post to any forum of any kind, but I'm at my wits end. This little journey started about five years ago. Fatigue led to a diagnosis of Hashimoto's Thyroiditis, which after about 24 months was well stabilized. But fatigue continued along with other symptoms. Then, an episode at home with blood sugar of 40 and heart rate of 200 accompanied by seizure led to four days in hospital with many many tests (cardio, neuro, endo). Discharge diagnosis of Hypoglycemia and Supra Ventricular Tachycardia, followed by about 18 months of treatment with Atenolol. Shortly thereafter came an emergency apendectomy (abcessed). Fatigue continued, accompanied by feelings of weakness, all-over claminess, and clothing-soaking sweats (even when blood sugar was normal), along with word-finding and concentration difficulties. Blood tests positive for "chronic-active Epstein-Barr (did have mono in college with spleen involvement)," but a referral to an infectious disease specialist resulted in "assurances" that this is no longer considered a valid diagnosis. I asked him to please tell me if this is psychosomatic, in which case I would just seek counseling. I was told it most definitely was not, and referred to a rheumatologist. She asked many questions and took some blood. I asked her the same thing, "please just tell me if this is psychosomatic." Again, no definitely not. Her words: She is confident there is some autoimmune disease process going on, but cannot give me a diagnosis, and therefore cannot treat me. So, I'm left to figure out and manage it via lifestyle (which would be my preference anyway). I did ask her if this seemed like CFS. She considers that a "trash can diagnosis." Did some studying on my own (at CDC site) and found I would be ruled out anyway due to history of hypothyroidism and depression. (Although I have long wondered about a psychosomatic component, I can very much distinguish this from depression, as I have a strong desire to do things I enjoy, just no stamina for it.) So I did make lifestyle changes including diet and trying not to over-do, and things seemed to get better. Now, this week, for reasons I cannot identify, things have come back full force (with all the previously mentioned fatigue symptoms), this time accompanied by a "roving achiness" in joints and muscles, and feet so cold they hurt (it is now 75 to 80 degrees in my home state). I just feel like if I could find someone to tell me WHAT this is, I could educate myself to manage it better. I also feel a strong need to know what I have done, or what has happened to cause it to flare up again. If I knew, maybe I could prevent another such flare. I do also have history of migraines, irits or uveitis, lichen sclerosis (an autoimmune skin condition of the genitalia), eczema, and seasonal air-borne allergies. There are other autoimmune illnesses of a much more serious nature in my family (I should probably be grateful rather than whining), including: ulcerative colitis with a full colon removal and now gastroparesis; multiple sclerosis; and hypothyroidism. It's not fair to any of you to ask for a diagnosis on-line, but could anyone at least give me a suggestion of what type of doc I should see in order to get a diagnosis? If there is to be treatment, I definitely would want it to be holistic or integrative. Any guidance would be deeply appreciated. My heart goes out to all of you who are coping with such lengthy lists and periods of symptoms, and multiple diagnoses. You are much stronger than I.

[CourtSC18]

I currently have iritis and an under active thyroid with diffuse body aches and all my blood tests have come back “normal” Dis you ever find out what was going on and receive a diagnosis?

[PlateletGal]

Hi ! I can tell you that I've had the vision blurriness before and for me anyway, it seemed to happen late afternoons/early evening. Blurriness has (finally) been listed by the CDC as a possible symptom of CFS:

http://www.medhelp.org/health_pages/Fibromyalgia/Symptoms-of-Fibromyalgia-and-CFIDS-ME/show/524?cid=39

Seizures have also been documented in some cases of CFS. You may want to ask your rheumatologist if she/he will check your cortisol level, B12 level and order another MRI (brain). In addition to that, I would have request a uric acid level (blood test)... because both MS and CFS patients often have a low level.

CFS patients (probably MS as well) often do better on a gluten free diet. You may want to consider trying this diet (with your physician's blessing first... but of course ! ; ^ ) )

Also, I would consider reading Professor Garth Nicolson's research on the role infections play in both MS, CFS and other autoimmune and chronic illnesses. Here's the link to his website.. his information is easy to read and understand:

http://www.immed.org

[PatsMak]

First, thank you SO much for taking the time to respond to my plea. When I was in the hosp for the "episode" that included seizure (2006) they did do a brain MRI; normal other than a sinus polyp. As for blood tests, I just this past week requested tests for inflamation, including C-reactive protien and Vitamin D. I believe RA factor was also tested, as I did complain of the pain in the joints. All was normal. I have also had ANA tested in the past; normal. Catecholamines; normal. I do not know what all was checked when the rheumy took blood.

In the light of a new day, and after reading your reply, I'm thinking maybe I should try another rheumy? I do have to confess, I'm a bit concerned about MS, as there is also tingling from time to time, along with vision blurriness. But I always remind myself that the MRI was normal, and I do have early onset cataracts, which I'm told is also an autoimmune issue (that would explain the blurriness).

I did take a look at your fibo/CFS forum last night, but through that since I don't have a legitimate diagnosis, I would not belong there. With your invite, I will definitely join.

Thank you again, and I will review all the links you gave me later today. Have to put in at least half a day at the office today...

Don't forget to take as much care of yourself as you do of all of us,

[PlateletGal]

There are an estimated 2 million people in the U.S. who have Chronic Fatigue Immune Dysfunction Syndrome and 80% of them have yet to be diagnosed.

I disagree with your physician. CFS is not a "trash can" diagnosis. This illness is very real and I recently posted in the fibro/CFS forum (I'm one of the Community Leaders there)... the comparisons between MS and CFS. Here is the link: http://www.medhelp.org/posts/show/760781 

Your physician may want to read about CFS and heart problems. This information is in our health pages in the fibro/CFS forum... here's the link:

http://www.medhelp.org/health_pages/list?cid=39

I can't tell you how many MedHelp members that I've seen who have said that they had mono or EBV and then had a Hashimoto's diagnosis. Thyroid problems are quite common in both CFS and fibro patients (link: http://www.medhelp.org/health_pages/Fibromyalgia/Diagnostic--Blood-Tests-to-Help-Diagnose-CFS/show/376?cid=39 )

I hope that you will consider joining me in the fibro/CFS forum. One thing I've learned is if you have a fibro or CFS diagnosis, then it is VITAL to keep updated on the latest research.  Also, which diagnostic tests have you had done so far ?? Have you had an MRI of the brain done.. vitamin D... B12.... lyme, etc.