autoimmune? neurological? neuromuscular? idk i need some help!!!!

[Trina1560]

Hi, I came across this site trying to research my symptoms because it seems my doctors aren't really that concerned and I feel like I'm on my own now. I'm very desperate and scared. I’m a 28 yr old female and was diagnosed with high blood pressure in 06. My vision started getting blurry around 05/06, I went to get an eye exam about 2 yrs ago and was told I have a stigmatism in both eyes but never got glasses. I had shingles on the right side of my face in July/Aug 2010. I started having stomach and bowel problems in about Nov 2010 and had a colonoscopy late Feb 2011. Had an endoscopy mid March that revealed I had gastritis (stomach lining inflammed). I’ve been suffering from Reynaud’s for some years now, didn’t think anything of it but I just got really cold until one day my fingers were taking so long to come back and were throbbing so bad I googled “white fingers and toes, very cold” and found it on my own. It’s getting worse in my feet, I have to wear socks and footies in my bedroom and they’re still very cold and turn red/blue. My head has been hurting everyday, all day, for about a month; very tender hurts to put pressure on it, hard to sleep, sometimes strikes of pain. I went to the ER a week ago because it was hurting so bad and my left eyelid drooped and now won't open as wide as the right. The CT scan only revealed an abnormality in my skull right front that I knew about but supposedly not a big deal. I've seen a rheumatologist 2xs; all blood tests were fine except a very low positive for antibodies. My basic blood work all came back normal. My muscles in my legs and arms are weak, its getting harder and harder everyday to climb stairs; my legs are burning and I'm short of breath. I have hypermobility in my joints similar to Ehlers-Danlos Syndrome but my rheumatologists knows nothing about EDS. Some joints are painful on and off, right now my left elbow is tender only when I extend it, a couple of weeks ago it was my left knee. I've been getting small muscles spasms in my eyes, arms and legs for years but didn't think anything of it. The spasms in my eyes were really bad in college but I didn't think it was anything serious. I see a nurse practioner April 12th with the plan to ask the doctor to slide in since thats the earliest I could get an appt. I've taught middle school math now for almost 5 yrs and haven't been to work in 2wks because the pain in my body and head have gotten so bad. I've never been a "crier" but I've cried more in the last few weeks than I've cried my entire life. I'm getting more and more concerned about my headaches everyday especially since my eye has drooped and of course everything else. I need some help :-(

[paperclip46]

I am in England and have been diagnosed with hypermobility syndrome.

I don't see it as a condition over there in America. But it sounds like some of you have this. Slipped discs to dislocations to tiredness, IBS,hernia,s Migraines etc.
A cascade of symptoms due to lack of collagen around the body.
Google it as it is discussed over here in length.

[Trina1560]

I haven't posted anything for awhile. I went from being discouraged for a few months; I ended up filing for short term disability for the end of the school year and never returned to work. Now I'm trying to get back up and push forward with what I have and need to do along with trying a different hospital and doctors altogether.

I've gained a few new symptoms; some petechiae on arms/calves/chest (always from a blood pressure cuff or some amount of pressure). My platelets were checked so its not a blood platelet disorder. My fingers now shrivel in a 10/15 minute shower like I've soaked in the tub for 40 minutes. A week ago I had a bump on my tongue that only lasted about 3/4 days and then went away. My hands have gotten kind of stiff and my fingers swell up especially after I've done some activity like after I run/walk to exercise. All the other symptoms are still pretty much there just some days are better than others. My gastritis is still active. My headaches come and go and my eye droops and gets dry every now again when I get drowsy/tired or focus on one thing too long. I was tested for Myasthenia Gravis and it was negative.

I just saw a new neurologist who seems pretty good on the 29th of June and they took A LOT of blood. I signed up for myBJC.org a while ago so I could see the results myself now. Everything was pretty normal except these things:

Positive ANA qualitative (Serum antinuclear ab)
Positive ANA quanitative (Serum antinuclear ab) 1:320, ANA interpretation - Speckled
High ALT 88 (in March it was 18)
High AST 65 (in March it was 32)
Low MCV 74.0 (in May it was 71.8 still low)
Low MCH 24.2 (in May it was 23.3 still low)
Low Hemoglobin 12.0 (in May it was 12.3)
Alkaline phosphatase was low in May 33 (now its 56 back normal)

I had a nerve conduction study and EMG (muscle test) done about a week ago and the doctor said that was normal. Talked to my doctor today (the new one, I stopped wasting my breath on my primary and those he referred me to a long time ago) and he has me scheduled for a skin biopsy next Thursday. He wants to wait for the findings with that to see if anything connects with these blood results before really analyzing them but he was concerned with my consistent low iron (MCV & MCH)

I just want to know what you think??? I'm still going crazy googling everything...

[karajo]

Trina, I am so sorry for not getting back with you.  Spring is so very busy for us.  And I know how it is to feel really bad and needing answers.  Please forgive me.  Thyroidian is actually smarter than I on many of these things, so I'm glad she weighed in.

As far as the sun exposure goes, just 20-30 min.  With your clothes on.  If you have lupus, it doesn't take very much exposure to trigger an immune response.  Thus causing the ANA (antinuclear antibody) to be elevated.  I just stood out in the sun prior to going into the dr. office.

And I don't know enough about Myathenia Gravis to know what all test are involved in the dx process.  I do know that muscle weakness, vision problems, and drooping eye lid are common symptoms.  

I also encourage you to educate yourself on Ehlers-Danlos Syndrome and what kind of dr. would know about that.  

The elevated ANA could be a significant finding, but it could not be as well.  

[Trina1560]

The rheumatologist gave me I guess what you'd call a dummy proof copy of my blood work so it was real simple to understand..one column said normal, the other column said abnormal. They took 6 tubes of blood and everything was checked in the normal column except "antinuclear antibody" it was checked abnormal with a positive sign and a circle around it. He told me it was low positive and waved it off like it was nothing. Idk what specific antibodies "antinuclear antibody" are? Should I ask for specific antibodies? Which ones?

I went to the neurologist today (well nurse practioner who went out and talked to the doctor about me) and they took blood to test for myathenia gravis and my CK muscle which was 119 with the rheumatologist March 17th so she said they were testing to see if the # increased. She threw fibromyalgia out there just like my primary doctor did and suggested I go back to the rheumatologist. I just feel like they're saying fibromyalgia because they don't know whats wrong with me and don't care enough to try to find it. They just keep bouncing me back and forth with nothing...I don't know what to do :'-(

[thyroidian]

Oh dear, you are having a rotten time.
Please can i ask what antibody was low positive ? which antibody test was it.

Neurologists, usually deal with MG Myasthenia Gravis. This condition usually affects the swallowing, along with muscles.

When i read your post this could be one of many auto-immune conditions.

If you could get your tests which have been previously done, along with positive antibody, then maybe work from there.

Good Luck
Nicola

[Trina1560]

the appt on the 12th is with the nurse practioner for the neurologist. Can they test for Myathenia gravis or is that strictly a rheumatological condition?

[Trina1560]

I saw something about the sun and the ANA before and I have come across Myathenia gravis during my research online. Should I have as much as my body as possible exposed to the sun? Like laying out tanning? I just want to make sure, if this could be the reason why it was low positive and something is really there, I do everything I can for them to find whats wrong me. I'm so desperate!!!
Thank you so much for this info

[karajo]

Mention Myathenia gravis at your next appointment.  

You might also want to spend time in the sun prior to your next lab and have them check your ANA again.  About 20-30 min (depending on how strong the sun is that day--- and even if it's cloudy.  It's the UVA/UVB rays that are needed)

[Trina1560]

I also have IBS which I take amitiza 8mcg. The only thing I use for the gastritis is pepcid ac