Health Issues that su** (long)

[Crankin]

OK, I have resisted writing about this here, because generally, I don't like to share this stuff on line. But, I have been having issues all summer and now it is October. It started with what I thought was a sinus infection, got treated and then my stomach was acting up. Started getting tingling in my feet and my bp was up. After several unfruitful visits to my primary care dr. where I saw the PA, I went to a neurologist. I had the full work up, the exam, tons of blood work, an MRI of the head and neck and an EMG. Everything was negative. At first everyone thought I had MS, but that didn't show up. Over the years I have had many weird medical things, all of which seem to come and go. I also had a time in my twenties when i had panic attacks and generally, i do not react well to thoughts that there might be something wrong with me. Since I started cycling (7 years) I have noticed that sometimes, in the beginning of a ride, I get a weird burning feeling from my left groin, up my back and I just don't feel that great. It usually goes away after I have warmed up. This started getting really bad, too. And, my whole adult life I have had weird muscle pains and aches on my left side, around the shoulder, neck, arm on that side too. It usually gets noticeable when i am sick. So after I came back from my trip to the Berkshires, where I did some very challenging riding, this all got worse. I have weird pains in my head, almost headache like, but not a headache. I have pain in my teeth, my left foot, buttock, and my calf. At times I feel like I am sick with a sinus infection, but now I don't have that. I also have a ringing in my left ear that comes and goes, but is very annoying. So in the course of trying to figure this out, I went to an ENT, who discovered I had 2 nodules on my thyroid. I got an ultra sound, which confirmed them. So now I go to an endocrinologist on the 18th. My thyroid levels are normal, but I am extremely freaked out. The endo will determine if I need an ultra sound biopsy. From what i read and what the ENT told me, only 5% of these nodules are cancer. OK, now the other part is that my primary care doc also sent me to a rheumotologist. I am being evaluated for Lupus, which might explain some of the weird things I've had over the years, but the Lupus tests the neuro gave me were negative. I also had a bone scan and an MRI of the lumbar region. I know the bone scan was fine. BTW, both the ENT and the rheumo. are cyclists and are very understanding. At this point, I can barely eat and my bp is up. My husbnd is ready to pack me in; I am very emotional and I can't stop thinking of all of the bad possibilities. Oh yes, when I was in the ER last week, they saw a "spot" on my ovary, so I had an ultra sound. That turned out to be nothing worrisome.
Retirement isn't supposed to be like this. I have not ridden very much lately. Sunday we did lead a ride, which had a lot of climbing, but we were going slowly, so it didn't aggravate anything, but I still had a lot of the symptoms. I guess I am just looking for support; the 2 above doctors told me to keep riding, that it will help, but I am so upset and feeling bad that I am scared to go out alone most of the time.
Any thoughts?

[DeniseGoldberg]

Robyn -
Wow, that really sucks. Hopefully the docs will be able to figure out what's going on soon.

In the meantime, and for whatever it's worth, I'm sending good healing (and mystery solving) wishes to you.

--- Denise

[spokewench]

Fibromyalgia - is what is coming to my mind, the phantom pains, etc. I know a couple of ladies that have this; it is a hard diagnosis and something you want to be careful with being diagnosed with since it can ruin your ability to get healthcare paid for. Of course, I'm not doctor or anything of the sort, but some of your symptoms sound familiar to how some of these ladies described their problems.

Anyone else on TE have fibromyalgia that might be able to help with websites or something?

[DebW]

Geez, not the retirement you had planned on. Sorry to hear about all the physical issues. Hope you get answers soon. Meanwhile, if you ever need a riding partner, or just a good listener, call me.

[indigoiis]

Have you been tested for Lyme Disease?

[ehirsch83]

Robyn,
I am so sorry you are having to go through all of this!
If you want anyone to talk to or ask questions to about the thyroid issue, feel free to PM me. I had thyroid cancer a couple years ago and had a complete thyroidectamy. So feel free to ask any questions about biopsy or anything else.

I hope they figure out what is causing everything else! and hopefully those nodules are just that, nodules.

[LBTC]

Robyn, that's a lot to deal with, and I'm sorry you waited so long to share it! This forum is the best place for support like this - I've been benefiting from it for over a year now!

I want you to know, as much as it feels like it, you are not alone! There are lots of us who have mysterious symptoms that defy diganosis. You can make it through this!

For me, the doctors were unable to help. They felt they had a diagnosis of Crohn's disease, but decided I was not sick enough (!) to put me on the terribly toxic drugs they use to control the disease. I'm very glad about this now, as I am much healthier now, and definitely on the road to wellness.

Besides the fabulous support I found here, and with my family and friends, there are three things that have helped me a lot: 3 fabulous alternative health care practitioners: acupuncture, integrated massage therapy (cranio-sacral, etc), and Bioenergetics testing; being kinder to myself by resting when I need to and continuing to do gentle exercise (yoga stretching every morning) as I can manage it; and a restrictive diet (primarily just gluten-free and dairy-free, but also really restricted on sugars and anything packaged).

I really think acupuncture would be a great place for you to try next. I've been constantly surprised at which meridians are where and how they are connected. Perhaps there is an imbalance along a meridian that goes along teeth, buttocks, calf and foot. Of course, it doesn't hurt (it's usually only uncomfortable) to go through the standard medical tests, especially if you can rule out some scary things, and you can take that info to whichever health care people you see will see.

If you want more info, PM me.

In the meantime, you are surrounded by gentle fluttering butterflies, you can feel the whisper of their wings at your temples, on your nose, along your fingers and all of you. Their shimmering blues relax and calm you, their gentle greens bring healing to your whole being, their bright yellows bring you sudden joy. Allow these butterflies to help pull you from your scared thoughts and into a gentler happier place. They are always there, but you'll feel better when you notice them!

Hugs,
~T~

[Crankin]

Thanks, everyone. Yes, I was tested for Lyme disease and I don't have it. It seemed a logical thing, since I spend a good part of the year walking in the woods. Right now I am mostly freaked out about the thyroid thing because although this is almost always benign, I have a couple of signs it might not be. Right now, i am envisioning the worst. Emily, I will PM you. My primary care doc is a big believer in massage, so she has mentioned that, too. I am going to try and go to the health club and do yoga, since I just unfroze my membership from the summer. If I can keep my stomach healthy and eat, that will help me the most until I get some handle on what is actually wrong with me. And, we had to cancel our long awaited vacation, which is really upsetting me.
Thanks, everyone for the quick replies.

[mimitabby]

did you get my email Robyn?

[Tuckervill]

Robyn, I'm just glad you shared with us. Things like this are easier when you don't go it alone. The wealth of information here should be helpful.

I'm sending out the positive healing vibes. Try to do other things besides worry. Worry is counterproductive.

Karen

[KnottedYet]

I am thinking good thoughts for you.

I'm also thinking that a lot of your symptoms sound a lot like many of mine. Is it possible you have celiac disease? (the best test seems to be going without wheat/oats/barley/rye and monitoring symptom response) Celiacs can get crazy gut and neuro symptoms that don't make sense. Because celiacs don't absorb nutrients right they can have nutrient related problems. Vitamin B12 is a huge problem for celiacs, we don't absorb it well. Lack of B12 can really mess with your neuro system, too. (beyond what the disease does directly)

Celiac is an autoimmune disease that gets worse with stress, you can go years without problems, it comes and goes, and you can have sensitivities to dairy and a few other foods. (I have to watch dairy and alcohol and sometimes soy, they can cause me trouble!)

Just re-read your post, and it is striking how similar our symptoms are.

(I also got to do the "is it MS? is it Lupus? is it Thyroid?" dance.)

[Crankin]

Mimi, I did just read your email. Thanks. I will look at that information when I know more about the thyroid situation. That is real.
Knotted, I have thought about Celiac. I am going to the GI doc on Friday. And this does seem to get worse with alchohol and right now the thought of anything whole wheat makes me ill. I am an autoimmune nightmare; all kinds of these diseases run in my family. I have a colonoscopy sceduled for 11/7 and that is freaking me out, too.
Oy.

[ginny]

Um... have you been tested for Lyme disease? You live on the Eastern Seaboard. There are instances (not all that rare) of lyme arthritis and even neuro borreliosis (Borrelia burgdorferi is the bacteria that causes lyme disease). I'm not a physician, but I am a research scientist, and I can tell you what you probably already know, it sounds like there's a problem with your nerves. That's why they looked at MS. There are a number of things that can cause problems with the demylenation of nerves - MS is one of those things. Some are autoimmune, some are caused by disease causing organisms (a very rare viruse HTLV-1 can cause symptoms nearly indistinguishable from MS), and they are nearly always very tough to track down. Good luck! Keep after it. Do your own research and suggest things to your doctors. You know yourself better than doctors, and they sometimes tend to blow people off... if you are sick, you know it better than anyone. I'm sorry you are going through this.

[latelatebloomer]

just a couple thoughts....

I tested negative for Lyme disease but had it anyway, my doctor said that false negatives were not unusual, and since I spend a lot of time in deer territory, I did the antibiotic treatment, and the neuro symptoms disappeared.

I agree with LBTC that you might want to look into acupuncture. If you could find the right practitioner for you, they can do a whole lot to de-stress your system, calm your mind, get you back into a balance that will allow your body to heal itself. It almost always knows how, you know? - if we can get out of the way and give it a chance. My husband and I both had serious problems for which "standard medicine" was useless. We worked with a chiropractor who specializes in using nutrition to help people with serious diseases and an acupuncturist who worked on us weekly for awhile. It was expensive, but we are both REALLY well now, way beyond what we thought possible for ourselves. So don't despair and don't give up.

sending healing thoughts your way. sharing was the right thing to do!

[silver]

I'm so sorry that you are going through this. Please share here whenever you need to.

My MIL has celiac. There is a blood test they can do to confirm but I think that you need to be eating gluten for the results to be useful. She nearly died before they figured out what it was. First GI doctor totally missed it. Put her through all kinds of tests. Would have been so much easier if he had just tested for this first.

I have the benign thyroid nodule. Went through the tests after being told that it could be cancer. The primary doctor sent me for the ultrasound and then the radioactive thing (not a medical term ) The endo did a needle biopsy in her office and confirmed that it was benign. She said that I hadn't needed the other tests.