Aa
Grasping at straws- need advice
Okay, I have posted about this before but I want to see if I can get some fresh ideas before I go to the doctor tomarrow. I have got a knot under my left ear that has been there since April. It is not sticking out, it's like it is inside my neck, a little smaller than a golf ball. It never gets much smaller or larger. At first the doctors said it was a swollen gland and I took no telling how many antibiotics and steriod(sp) shots. They did a cat scan of the soft tissue of my neck and it was normal. They diagnosed me w/CFS. I fooled w/this doc for about 3 monthes and had NO improvement. I was in constant pain in my left ear, neck, and in this knot. I finally switched docs when he wouldn't give me a referal to ENT. This doc did. The ENT said there was no fluid behind the ear & that I had minimal hearing loss in that ear (whatever that means). He said it was TMJ and that the knot was inflamation from the TMJ. That was a month ago. Since I saw him I am still no better. The pain is so severe I can't function. My family and home and every aspect of my life are suffering because of this. I hurt so badly that I can't even sit still. I pace the floor all the time because I can't sleep either. I plan to go back to doctor tomarrow if she can see me, which direction do we need to go? I also lost my insurance a few weeks ago so money is a MAJOR issue. I need some ideas and suggestions. Please help. I am so misserable and I hurt so bad.
I don't know if the knot you describe is below the jawline, which would be an inch or so below the ear, but if so, a blocked salivary gland or stone in it can cause painful swelling. An ENT is still probably your best bet (thought not sure the same one). You may want to investigate how your financial status fits in with guidelines for being treated at a local clinic. When I had to stop working because of illness, I found the local teaching hospital that has a clinic for the indigent was more informed than the average doc, and the service was prorated based on income.
Okay, have been to doc and am going to have to fast Monday morning and go back, but she wants to do a COMPLETE blood work up. (Didn't do it today because I think I have had a couple of times where my blood sugar dropped & I have a lot of diabetes in my family. I posted about it the first time it happened a couple of weeks ago.) I have also been having a period every 2-3 weeks for almost 2 years and she wants to check my iron.
She tends to agree with the ENT that the knot is inflamaion due to TMJ. She is getting a copy of my cat scan from 1st doc which we didn't do before since she sent me on to ENT(ha she thought she was through with me!)
She upped my dosage of Topamax from 25 mg twice a day to 50 mg twice a day. (She said it is used to treat chronic pain as well as prevent migraines.)
She also said to keep taking the B complex. She said that the reason for it changing the color of my urine is probably the B-12 in it as it is very hard for the body to absorb. But that the B-6 was good and I was probably getting it. She advised to keep taking it anyway.
So, now it is just a matter of wait and see what my blood work shows. Thanks so much for all the advice & help. Take care.
She tends to agree with the ENT that the knot is inflamaion due to TMJ. She is getting a copy of my cat scan from 1st doc which we didn't do before since she sent me on to ENT(ha she thought she was through with me!)
She upped my dosage of Topamax from 25 mg twice a day to 50 mg twice a day. (She said it is used to treat chronic pain as well as prevent migraines.)
She also said to keep taking the B complex. She said that the reason for it changing the color of my urine is probably the B-12 in it as it is very hard for the body to absorb. But that the B-6 was good and I was probably getting it. She advised to keep taking it anyway.
So, now it is just a matter of wait and see what my blood work shows. Thanks so much for all the advice & help. Take care.
Why you think that your body is not absorbing vitamins? I read about the urine being greenish colored and that could be diet related.
Studies have shown that CFS patients' are deficient in vitamins & minerals. One study showed that two-thirds of CFS patients' had no detectable vitamin B-12 in their brains, even though their blood levels were normal ! I know that many CFS patients' have problems with digestion and vitamin B is best if given by injection. It is very hard to absorb.
Supplements that are usually recommended for patients' with CFS are:
B-12 - preferably via injection
B-Complex
Magnesium - I buy the powered form
Multi-Vitamin - make sure it doesn't contain copper or iron
L-Glutathione
Coenzyme Q10
Omega 3 or Flax Seed Oil
Vitamin C & E
Digestive Enzymes (Probiotics)
You may want to call your physician before taking these supplements.
He just said inflamation. By this time I was so discusted and upset I didn't ask anything else and said I wasn't going back, I would just suffer with it. Stupid, I know.
What about the vitamins I am taking? Why is my body not absorbing them? Any ideas?
What about the vitamins I am taking? Why is my body not absorbing them? Any ideas?
If you have CFS, keep in mind that if you get officially diagnosed before you have health insurance, when you get health insurance you will have to list it as a medical condition and they will call it "pre-existing" and not pay for any CFS related doctors visits. There are some over the counter supplements that can help w/ chronic fatigue. Check out google.com and type in "Dr. Paul Cheney" + "treatment for CFS" and he has a basic treatment plan for CFS if you wish, you can try the supplements (like magnesium, B complex) and see if you feel better.
I don't know what to tell you about your ear. Did the doctor said it was a lymph node ? I do have a hard time believing that a knot could be from inflammation. Wish I could be more help.
I would ask for them to test for autoimmune diseases as well. Sjogrens is one where your salvary glands swell and get painfull.
So is this just blood tests? And what does Sjogrens do to you? Never heard of it before. How is it treated? Thanks.
Yes, the chronic fatigue and depression I have good days and bad days, the Cymbalta has helped A LOT with it. I guess the only thing that isn't related to either of them is the swollen gland. And that's what it feels like it is. And it is in the EXACT same spot as the gland that has swollen before when I had ear infections or something, except of course it always went down before and didn't this time. When I touch it that is what it feels like too. But the cat scan of the soft tissue of my neck showed my glands to be fine. Not enlarged or anything. ENT said inflamation due to TMJ. I have to admit, this hurts unlike any of the other times I have had swollen glands. But if it were inflamation from the jaw joint(TMJ joint, whatever) wouldn't the knot be on the joint? Or wouldn't the joint be swollen also? Why is this knot way down here below my ear when the joint is probably 2 inches higher and to the left of the knot? Also, don't know if this is related or not but I'll run it past you. If you remember in my other post my talking about the 2 books I purchased for chronic pain and tmj, in one of the books was a list of vitamins and what they are useful for. I started taking a B Compound the other day and my urine changed to almost neon yellow/kinda greenish tint. I posted and was told it was because my body wasn't absorbing them to take them with food. I have been but it is still turning my urine this strange color. It's really bright in the morning a few hours after I take the vitamin and by night it is normal again. Why would my body not be absorbing them? Could this be related in any way? Thanks for taking time to read all this. Any input would be appreciated. I couldn't get in to see my doc today but have an appointment in the morning. Thanks again.
Well I'm happy to hear that you got a diagnosis, even though it was CFS. Having CFS is the pits. One of the symptoms of CFS is tender lymph nodes, but usually in the armpits or neck. Since CFS is an infection, you could have a swollen lymph node(s) with CFS.
I would continue to follow up with your physicians.
How are they treating your CFS ?
Ha They're not. They recomended taking 2 weeks off work and then come back to see them. That is when I switched doctors. I only saw this doctor one time and she said that I needed to see ENT because I did have fluid behind ear. (First doc said I didn't.) Of course she gave meds that were really good and by the time I saw ENT fluid was gone. Knot wasn't. He then diagnosed the TMJ. I have since been laid off from my job & lost my insurance. Which is why I am not seeing ENT tomorrow. I am hoping that the gp that referred me to him can somehow help since he said it wasn't an ear problem. The gp is cheaper on office visits than ENT. We really can't afford for me to go to gp, you know there are always meds to buy too!! Hubby made me go when he realized how much Advil I was taking for pain. 5 at one time. I buy a bottle with 100 in it and it is gone in 2 weeks. I know that can't be good for me, but heck I hurt now. I'll worry about the consequences(sp) later.
You can google the term and see if any of the symptoms match. Be careful, though. The internet is a scary place when referencing symptoms. I would say that you need a biopsy. Truly, they need to see what the tissue is that is making the knot in the first place.
Didn't you post here earlier with other symptoms ? Is this swollen gland your only symptom now ?
I posted to you in the women's section. However, I was thinking it could be a cyst or nodule that is actually nothing to worry about, but it could be pressing on a nerve and that would cause severe pain!!!
I guess I am going to cough up the money to go back (that is my plan right now anyway). This thing is killing me tonight! I hope I go in there and she by some miracle knows exactly what it is and what to do for it and that whatever it is it is EXTREMELY cheap. Keep your fingers crossed for me. I was hoping someone on here would give me some new ideas as to what it could be.
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