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Posted By : dar2017 - 9/5/2017 10:52 PM
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.

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)

Posted By : pitmom - 9/6/2017 7:31 AM
Hello and welcome.

My eyes riveted on when you said 'adrenal adenoma'. Have you been tested for Cushing's Disease?

My daughter had a microadenoma on her pituitary gland. Cushing's can be from pituitary tumor, adrenal tumor or 'ectopic tumor usually of the lung'. Cushing's symptoms can include memory issues, muscle pain and fatigue, diabetes, vision issues, and many others.

I would suggest you ask your endocrinologist to do cortisol testing. Cushing's can present in so many ways that most doctors hear hoofbeats and assume it's horses, not zebras.
multiple surgeries for rotator cuff both shoulders with residual chronic impingement syndrome, ulnar nerve transposition, carpal tunnel release, wrist ganglionectomies/denervectomies/tenolysis, multiple herniated discs, tarlov cyst, whiplash, bursitis of hips, tendonitis, torus, 3rd degree shoulder separation, torn labrum, ovarian cysts, fibroid tumors of the uterus

Posted By : dar2017 - 9/6/2017 8:11 AM
Yes, I have been tested for Cushings. I dont have it. Cortisol is normal. Thyroid is normal as well.

Posted By : straydog - 9/6/2017 9:46 AM
Hi Dar & welcome to Healing Well. From my own personal experience when there are multiple issues going on, they are only going to concentrate on things one at a time. My first thought for you is to make a list of your symptoms, starting with the most critical ones being at the top. You have a lot of different issues going on & I can see why it feels like you are getting no where. So many things can overlap each other & that is another problem.

You mentioned Lyme, are you currently being treated for that? Many of your symptoms point to that. Some of them also point towards Fibro. We have both of these forums here at Healing Well. I suggest that you go to the Fibro forums & at the very top is a "stickie", I believe it is titled Fibro 101 & read that. Check to see how many of your symptoms match up.

I do hope that you are taking care of the vitamin deficiency because being low can cause some of your issues. As for the neurologist, well, I will say this, not many of us have ever had success with one. Other than labs how active has your PCP been involved with trying to help you? If you have not had your eyes checked lately, I suggest going in for an eye exam.

Keep us posted. Take care.
Moderator in Chronic Pain & Psoriasis Forums

Posted By : dar2017 - 9/6/2017 3:12 PM
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.

Posted By : rocckyd - 9/6/2017 4:17 PM
I don't have much to say that can help you, but I hope you can find a Dr who can help. Sometimes, when a person has a mess of symptoms, a university hospital might help. I drive 3hrs to one and 2hrs to another. It's 100% worth it. If things are rough, I'll spend the night, or get a friend to drive me and cover food and gas.

You might want to consider seeing a rheumatologist. There are over 100 types, and they affect your body in different ways. X-rays alone may not reveal a problem. I was diagnosed with JRA as a kid. Other than getting my TMJs replaced, which is commonplace with JRA, most of my problems involve my organs.
Single mom to my little man 11yrs old
39yrs old. JRA since a kid. Chronic Uveitis, pleurisy, pericarditis, intersticial lung disease, sjorgrens syndrome, Cushing's Syndrome, gastroparisis
Bilateral TMJ replacements due to bone fusion, port-a-cath, g/j feeding tube, antiphospholipid antibody syndrome(my blood fights itself) epilepsy, MCTD, dysphagia(unable to swallow correctly)

Posted By : (Seashell) - 9/6/2017 9:10 PM
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.
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

Posted By : Mercy&Grace - 9/6/2017 10:21 PM
You need to seriously consider going to a teaching hospital. When private doctors can't or won't try and find out what is wrong teaching hospitals are your best bet

Posted By : Mercy&Grace - 9/6/2017 10:24 PM
You need to go to a teaching hospital.

Posted By : straydog - 9/7/2017 8:27 AM
Dar, I think Mercy & Grace just gave you the best tip ever. Google the closest teaching hospital to your location. Call & find out what you need, I feel certain you will need a referral. Your PCP can handle this. They will put your through examinations & testing they feel is necessary. Many people do this when regulars drs fail them.

You mentioned a relative ending up in a wheelchair. From the sounds of it, perhaps whatever the condition was their wasn't medical knowledge available to treat her. So, please try not to get in a panic mode. Instead see about a teaching hospital.

Take care & let us know.
Moderator in Chronic Pain & Psoriasis Forums

Posted By : dar2017 - 9/7/2017 10:33 AM
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.

Posted By : (Seashell) - 9/7/2017 1:00 PM
I am sorry that you were summarily dismissed by the ER physician last evening. Your symptoms sound concerning.

Any possibility that you are having transient ischemic attacks (TIAs), which are a form of stroke or cerebral vascular accident that resolves?
Do you have any risk factors for stroke (high blood pressure; athlersclerosis; high cholesterol; heart mummur or irregular heart beat)?
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

Posted By : dar2017 - 9/7/2017 6:05 PM
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.

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