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.

[salsabike]

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?

EXACTLY what I was thinking, and it's because it sounds so completely like what I went through years ago before my fibromyalgia was diagnosed. In the process of many scary years, I thought I had MS. I've been tested for lupus three times (don't have it). I've had tingling and odd muscle twitches and headaches. I had these symptoms and others (visual symptoms, for example) for many years before I got diagnosed. Thyroid nodules are really common and usually aren't cancerous.

My advice is: find a well-trained, young rheumatologist and ask about whether this could be fibromyalgia. I have never had any trouble getting health care coverage, by the way.

PM me if you want. I can't tell you how familiar this all sounds, although I realize that doesn't automatically mean it's the same thing. I am doing very well, by the way, so please know that you will not always be this scared. And feel free to ask my spouse sometime how insanely anxious I got the first time I was tested for lupus.

[Crankin]

Again, thank you, everyone, for the incredible support. I had a really bad night. I can't fall asleep and then when I do, it's for about 2 hours. Then I wake up and the whole cycle starts again. I managed to sleep until 7:15, so I probably got 5 hours? My husband is working from home most of the next 2 weeks, since this is when we were supposed to be away. He doesn't know what to do with me. We are both very pragmatic people, but in this case, I seem to have lost all perspective. Anyway, after an hour of crying, I called the endocrinologist back and told the receptionist what was going on. They are seeing me tomorrow (I think when I said i can't eat, sleep, and my blood pressure is up helped). At least the whole process will go forward sooner.
Intellectually I know most of these things are benign, but my neck is hurting and the ringing in my ear is making me believe it is connected to the thyroid thing. I keep assuming all of my other pains are a big scary cancer all running together. I know it's stupid and not likely, but the thoughts are there.
In answer to the other points, I know about fibromalaygia (sp?) and will definitely bring it up with the rheumo. He is fairly young (40s), Harvard trained and practices in Boston one day a week, so he is hooked into all of the medical research community here. He listened well. I have excellent medical insurance, don't need referrals, so there's no problem there.
My husband got the name of a therapist for me, but I really don't want to start there. My other concern is that Steve will be going away Oct. 27-Nov. 3 to Japan and Korea and I am freaked out about being alone with this issue. All of my friends work, except for one who is really crazy and over reacts to everything. She doesn't know about this.
I will keep you posted.

[Triskeliongirl]

Hi Robyn. So sorry you are going through this. Hopefully getting in sooner rather than later with the endo. will help. I agree, I think having the facts now is all that can stop your imagination from going wild. Do you have any family members that could come and stay with you while Steve is away? While sometimes its hard to ask for help, sometimes that is the best thing to do. -eileen

[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

[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.

[Crankin]

I really don't think I have Lyme Disease. I've had some of these weird things for over 20 years; I lived in AZ when it started.
I am not adverse to alternative medicine, but in this case, that will not help if I have thyroid cancer. I have tried chiro and found it to be most unsuccessful. I would rather investigate PT or accupuncture if I go that route.
Silver, they would not put me through the "radioative" thing first, I would have the needle biopsy. I already had the regular ultra sound, which confirmed what the dr. felt. I am nervous because one of the nodules is solid and I think it is causing the pain in my ear (not common but can happen).

[emily_in_nc]

Robyn,

I have nothing new or useful to add, just wanted to lend my support and caring. The community here is wonderfully supportive, so I am really glad that you divulged your situation. Please do keep us updated, and know that we're all pulling for your improved health and for a benign diagnosis.

Warm thoughts,
Emily