Looking For Some Direction

I didn't exactly know where to post this. Due to the pain, I decided here. I am tired of being in pain. I guess I am looking for a new direction to go in.

I have tested positive for EBV, Western Blot Lyme positive, Elisa Lyme Negative, RA Factor is 23, B12 is low, VitD is low. I have type 2 Diabetes controlled by diet. I also have an Adrenal Adenoma. I have had many food allergies pop up over the last couple of years. I have a slipped disk in my lower back, however symptoms started before the back injury. They started shortly after I had my daughter.

Symptoms-
Migraines, muscle stiffness, spasms, joint stiffness, my left hip and knee are locked, not exactly locked,more like limited range of motion. My left ankle and right elbow are on the same track. My left side of my body will go numb, tingle, especially my face. This scares me. I thought I was having a stroke the first time. The internal buzzing is the one I forget. It doesn't happen often, but when it does, its just annoying and I have to wait for it to pass. My inner ears will vibrate and spasm. I have to immediately plug my ears and close my eyes because I feel like I am spinning and about to pass out. That's another one I forget as well. My memory isn't that great either. Especially for words. My family may think its funny, but I find it frustrating. Especially when I am trying to ask for something or need something. I can see it, but cant say it. The muscle cramps and spasms happen whenever and where ever. In my fore arm, hands, fingers, calves, hips, lower back, thighs, toes, heels, under my eye. The tingling mainly happens around my shoulder blades. Another one that concerns me is the thigh and hip pain. My legs will turn inwards and it is very hard to walk. Its like my legs don't want to work. My husband says I don't have any muscle tone in my lower back. I have been trying to build strength and muscle, but still the same as far as I can tell.

I went to a neuro and that was a joke. He interrupted me non stop to talk into mic. I really couldn't explain my full list of symptoms because he would end up clicking his mic and speaking over me. Then he poked me a couple of times with a pin, tested my strength, had me walk, said I was fine.

I had some x-rays done and I don't have any arthritis.

After years of trying to get answers, and the neuro joke I decided to not go to any more doctors. However, I am very afraid of ending up in a wheel chair. I still need some answers. Maybe a different direction. I just need to be able to start somewhere to treat what ever this is that may be going on. Its frustrating. I am more than sure I forgot something. Ill post it if needed. Thank you for reading.



I gave your post some paragraphs to make it easier to read. Some of our members have tracking issues & the paragraphs help.

Post Edited By Moderator (straydog) : 9/6/2017 9:30:52 AM (GMT-6)

Yes, I have been tested for Cushings. I dont have it. Cortisol is normal. Thyroid is normal as well.

No, I am not being treated for lyme. I only tested positive on one test and it was only one strain that i tested positive for. On top of that, I am allergic to the medicine used to treat it. Its a med that starts with a D, I cant remember the name. I had my eyes checked about a year ago because of the diabetes. They were good. Only astygmatism(sp?) I was diagnosed with fibro like 10 yrs ago, but I highly doubt it. It may be a contributing factor, but I have this feeling there is something else going on. Ive made a list of my symptoms, the docs look at it and give it right back. Its like they dont care. I was told of my Grandmothers sister, who had something similar to what I have and she ended up in a wheel chair by her mid 40's. I dont know what it was though and neither does my aunt. Maybe with a bit of asking around they can find out. I just have this sinking feeling that I am not going to be able to enjoy my body for much longer. There are things that I still want to do. I am hoping I can find out, treat it, and extend the use of my body a bit further. I am already having trouble getting around. Sometimes I think to myself"Its all in my head. I will ignore it, and it will all go away." Nope...doesn't happen. Still there. Still happening. Still losing use of my left side. Slowly, but ever so surely.

Like pitman's response to you, the words "adrenal adenoma" strikes me as potentially significant.

The adrenal glands produce several critical hormones. The adrenal glands play a pivotal role in health and well being. Adrenal adenomas can be functional (secreting excessive hormones) or non-functional (non hormone secreting). Functional adrenal adenomas can wreck havoc on the body can altering the physiological functioning of secondary organs and organ systems.

Cortisol, aldosterone, epinephrine, and norepinephrine are just a few of the critical hormones. Cortisol is life-essential and has wide reaching effects. Aldosterone, along with renin secreted by the kidney's, regulates blood pressure and sodium and potassium regulation.

If you have not have a full endocrine work-up that would be a logical starting point. Be careful and spend time researching the area of speciality that the endocrinologist practices. Most endocrinologists focus on diabetes as the bread and butter of their clinical practice. This is fine for you as far as your diabetic management but less enticing as a clinician to evaluate any possible adrenal or HPA axis (hypothalamus-pituitary-adrenal) problem that you may have. Pituitary and adrenal conditions are complex and complicated. You will want to source and locate an endocrinologist with a neuro-endocrine background.

The Pituitary Network Association and the National Adrenal Disease foundation are both non-profit, 503-C organizations that can offer endocrinology referral assistance. Google one or both for contact information. Both organizations have live persons who man their 1-800 telephone information centers. You will be able to talk to a live human being.
Karen

You need to go to a teaching hospital.

Last night I ended up in the ER. My left side was cramped and spazzing. Couldnt move. Couldnt straighten out. Before it somewhat ended, I felt a migraine coming on. On the left of course. The left side of my face, lips and tongue are still tingly. I got the pins and needles feeling on the upper left side of my back. I could feel the pain run down from my neck to my mid back, and down my leg. My left arm is still a bit cramped. In my discharge notes it says...Back Pain and Injury. WTH???? I never said anything about a back injury or any back pain!!! Once again...I am dismissed. Written off. I am talking to the hospital as i type this. I am quite ticked that I was so blatantly ignored and diagnosed for something I didn't go in for. They didn't put in the paperwork that a migraine came on along with tingling and numbness. Holy cow!!! No wonder I can't get the right diagnosis!! I just want to cry.

I somewhat rested today. Took my daughter to her classes, checked on a house. That's it. I went to my pcp. She was shocked that they didn't give me blood pressure medicine. It was 189/99 when I got to the ER. I'm usually at 111/71. She did order a ct scan of my brain. I want to get it done before the end of the year and my deductable resets. I really want to rule out MS as well. The fact that I had a migraine during the end of this muscle spasm, tells me I had another one of my episodes, or flares and my rheumatologist called it.
To answer above, I have seen a rheumatologist and an endocrinologist. I don't have arthlersclerosis and my adrenal adenoma isn't producing any harmful hormones. It hasn't grown or shrunk.
As for my heart, I had a sonogram and ekg eeg done. The tech said he cant diagnose what is wrong, but he got a pic of it. He told the doc outside, I could here them talking. The doc comes in and says...nothings wrong. I wanted to get a second opinion, I asked for my records, they took me to a room with a 2 way mirror ( I am seriously not kidding), told me that the tech had disappeared with the sonogram machine and the FBI has my records. No joke. I am not kidding or making this up one single bit. So, I move on to get a second opinion. I get there, I am having chest pain. I let them know. They do an ekg. The doc says there's nothing wrong. So, I am just not very fond of doctors. I don't know if I am just not convincing enough, nit getting my symptoms across the way they need. I don't know. But with the current pcp, she has been very understanding. She has been patient with not pumping me up with meds. I hate meds. They just make me feel like crap. Some of them have literally knocked me on my hiney. And yes, I do have med allergies. its just crazy.