Anybody know anything about Pulsating Tinnitus? GOOD NEWS IN POST 13.

[TruBlu]

It's terrible. The pulsing is very loud. I've lost a lot of hearing and the noise wakes me up at night. I have to go tomorrow for a MRI. My ENT thinks I may have a tumor. It is really scary. Any of you guys have any experience with this problem?

Could you please say a prayer for me tomorrow at 11:00? That's when I'm having the tests.

[mommasita]

I honestly don't know.

I will be thinking of you, and praying. :grouphug:

I also have an MRI of the brain scheduled for Feb 4th, and they are not thinking good things.

Can you update please when you can. :grouphug:

[TruBlu]

I honestly don't know.

I will be thinking of you, and praying. :grouphug:

I also have an MRI of the brain scheduled for Feb 4th, and they are not thinking good things.

Can you update please when you can. :grouphug:I will definitely update when I know something.

I will pray for you as well. Hopefully we will both get good news.

[kimis]

TruBlu and Mommasita you both will be in my prayers.

[Mackey Mouse]

Hey you two... no way.. stop. I cannot hear that the two of you who are so supportive to so many here are having tests and thinking not so good things..

Please.. let me know what is going on... I am officially freaked out by this. Hugs and prayers to you both..

[mommasita]

Hey you two... no way.. stop. I cannot hear that the two of you who are so supportive to so many here are having tests and thinking not so good things..

Please.. let me know what is going on... I am officially freaked out by this. Hugs and prayers to you both..

Oh Please don't worry. You have so much going on. How are things?

I was kind of waiting for an official diagnosis, but here goes, and TruBlue, I hope you don't mind.

I have been diagnosed (unofficially for now) with MS :sad1: . I had a MRI done a while back that showed multiple lesions, and now am on sick leave for 3 to 4 weeks (maybe longer, but I hope not). I was in hospital Sat with a blood clot and am on all kinds of meds, and now they are worried I might have ALS (due to other issues). I am praying it is MS rather than ALS.

So this week I have had some bad episodes. Some fainting, blurred vision, trouble swallowing (chocking) etc. I have Sjogren's , so it may just be that. I can not remember anything, my memory was horrendous and foggy, but it has completely disappeared. I have this on the 4th, and an EMG on the 19th to see exactly where my muscles are at. All of my physicians are waiting for this MRI to see if they can confirm MS. They have asked me not to drive, and I have almost complied, just had to pick up my DD today after school.

I guess I am just angry. Like anyone else, I don't want anything wrong, nothing more. My plate is so full with the rest, but you have to take what you are given, and keep going. The part that affects me the most is my children. I was always a get up and go Mom, drive here, run there, sports here, etc, like many of us, and now I am having trouble just doing the basics. My son will be 13 in March and my daughter 10, so they are quite reliant for thinks of this nature. My husband has been wonderful, but I know he does not deal well with illness. When his Mom had lung cancer, I was the one going to the chemo and everything that went along with it. I did not mind, don't get me wrong, he just was an emotional wreck. I told him that if I am diagnosed, I won't put him through that. I will leave. I know he HAS to deal, but he is lousy at that, and I think I would rather rely on just myself than that.

Gosh that was long, sorry about that. The last part I have only shared with my best friend in the world. Never anywhere, but now I wrote it out, and I feel relief.

TruBlu how did it go today?

[TruBlu]

Hey guys!
It wasn't much fun today, but at least it is over. The MRI took almost an hour, and it was REALLY hard to lay still for that long because I'm still having quite a bit of pain from my other surgery.
I'm not sure if it was the contrast or the fact that I hadn't had anything to eat, but I felt terrible when it was over. They gave me the films to take to my doctor, but I had to come home. By the time I felt like driving again, it was time to take DS to his vision therapy session, and then the doc's office was closed. Soooo.... I still have the films out in my van. I wish I knew how to read them! I may give it a try tomorrow. :upsidedow

[TruBlu]

Gosh that was long, sorry about that.Never be sorry for sharing with us. We love you here! :grouphug:

I pray that everything is going to be OK for all three of us (you too, Marsha). No matter what it is, we are going to be OK.

[Mackey Mouse]

OK.. you two.. I am watching here.. please keep me in the loop.

I am doing lots of deep breathing lately....I did have a mammogram that was perfect.. so that is a plus. NOw I just need to do the Endo and colonoscopy thing, but I have no time right now... Maybe once this radiation is over, I can set up an appt.

Anyway.. I am thinking of you both.. Mommasita, do pm if you need me.. even if it is to just talk.. you too trublu..

Hugs

[Elfstar]

I am hoping and praying as hard as I can for you both. I am also a pm away if you need to talk. :hug:

Trublu, I hope your MRI gets to the bottom of your troubles and the doctors can help you easily.

Mommasita, as odd as this sounds, I'm hoping MS is your diagnosis - anything, anything BUT ALS.

[TruBlu]

I see the doc tomorrow afternoon. Wish me luck!!! :) My swishing has been much less today - hopefully that is a good sign. ::yes::

[mommasita]

I see the doc tomorrow afternoon. Wish me luck!!! :) My swishing has been much less today - hopefully that is a good sign. ::yes::

Good Luck. My thoughts and prayers are with you. :grouphug:

[TruBlu]

My MRI was tumor free! :cheer2:

My new diagnosis is MUCH less scary:
Idopathic intracranial hypertension

This is what Wikipedia has to say about it...
Idiopathic intracranial hypertension (IIH), sometimes called by the older names benign intracranial hypertension (BIH) or pseudotumor cerebri (PTC), is a neurological disorder that is characterized by an increased intracranial pressure (pressure around the brain) in the absence of a tumor or other diseases. The main symptoms are headache, nausea and vomiting as well as pulsatile tinnitus (buzzing in the ears), double vision and visual symptoms. If untreated, it may lead to vision loss due to associated swelling of the optic disc in the eye.

IIH is diagnosed with a brain scan (to rule out other causes) and a lumbar puncture; lumbar puncture may also provide temporary and sometimes permanent relief from the symptoms. Some respond to medication (with the drug acetazolamide), but others require surgery to relieve the pressure. The condition may occur in all age groups, but is most common in young women, especially those suffering from obesity.

I guess this is just one more reason that I HAVE to loose weight.

[mommasita]

I am SOOO happy to hear your results!!! :grouphug:

That does sound a lot less scary. It is good to know what you are dealing with.

[Mackey Mouse]

So glad to hear the news.. woohooo!!!!!!

[TruBlu]

I am SOOO happy to hear your results!!! :grouphug:

That does sound a lot less scary. It is good to know what you are dealing with.Now we can pray for you to get equally good news. :goodvibes

[TruBlu]

Just a post out of frustration here.....

My doc told me on Tuesday that he was calling in a prescription to start my treatment. I went to pick it up and they said he didn't call. So, yesterday I called his office and they had lost my chart! Still no meds....

FINALLY this morning someone from his office called me and said that he called it in today. He thought he already had!!!

So, I've had to live with this headache, swishing, and dimming vision with no treatment for 3 extra days now. :sad2:

OK, complaining over. I'll start the meds. tonight. Hopefully they will work fast. This sound is driving me crazy. I'm considering going home sick so I can start them now...

[mommasita]

Just a post out of frustration here.....

My doc told me on Tuesday that he was calling in a prescription to start my treatment. I went to pick it up and they said he didn't call. So, yesterday I called his office and they had lost my chart! Still no meds....

FINALLY this morning someone from his office called me and said that he called it in today. He thought he already had!!!

So, I've had to live with this headache, swishing, and dimming vision with no treatment for 3 extra days now. :sad2:

OK, complaining over. I'll start the meds. tonight. Hopefully they will work fast. This sound is driving me crazy. I'm considering going home sick so I can start them now...


UGGHH. I hope you start to feel better soon with the medication. So frustrating at times, isn't it. :grouphug:

[TruBlu]

It got even worse. I called the pharmacy to make sure it was ready and found out that it is a rarely used med. and they had to order it! Hopefully it will be here tomorrow. :)

[Elfstar]

Yay, I'm glad you got some good news :grouphug: :cheer2: - now as far as the medication goes - my dad has always said "good things take time" - so hopefully once you get it, it'll work!

[TruBlu]

The fun never stops...:sad2:

I got a call this morning from the radiologist. She forgot to run 2 of the tests ordered by my doctor. She just found it this morning, so I spent half the day having more MRIs.

It bothers me that my doc didn't notice when he got the results.

AND - still no meds. :headache:

[mommasita]

My MRI is this afternoon. I don't see my Dr until the 19th, but boy am I :upsidedow

[Mackey Mouse]

I am following this thread and hoping for them to finally give you what you need... Geez, I am getting so annoyed here.. This is our healthcare system at work and it needs some serious help. I could write a book at what I have seen the last 4 years with Tom..

Mommasita, please let me know how you do.. hugs to you too..

[TruBlu]

OK, I am changing doctors. I've got some serious questions about my ENT.

My first hint was when he "forgot" to call in my medication. The second was him not noticing that they only ran 1 out of the 3 tests he ordered. And the final straw is this...

I started having some strange side effects for the medication. My urine got very cloudy and my hands and feet started having pins and needles. I called his office to see if I should be worried. I spoke briefly with his nurse. She told me to hold on while she talked to the doctor. She was gone less than a minute, and came back on the line to tell me that the doctor said "Take it or don't, there is nothing else I can do for you." So, I asked her if the side effects were normal with this medication, and she said "I wouldn't know". :confused3

Well, when I got home from work I had a message from the doctor saying he was returning my call. :confused3 :confused3 :confused3

I didn't bother to call him back. I think they have some serious problems in their office, and I refuse to be treated like that! There are lots of ENTs out there.

Yesterday I started to itch and develop a rash, so I stopped taking the medicine. I took some benadryl last night, and the rash is gone. Actually, all the symptoms for the medicine are gone, but the swishing in my ear is louder than ever. I guess I'm just going to live with it and work on loosing some weight. I've read that it will help. :guilty:

[LouDisney]

I am praying for you. I know you must be very frustrated.

[Mackey Mouse]

I cannot believe this. I went to see where you lived but you are not close to MA.......we have a good hospital in Boston called Mass Eye and Ear....and people come from everywhere to go there. My daughter had her thyroid surgery there..

Here is the thing..... first, I would look up the name of the medication I was taking to see what the side effects were and if what was happening to you was normal.. I would note that so that when I went to another doctor I could say XYZ gave me these side effects, I cannot have that again so if you give me something else can we check on the side effects..

I would then call my primary care and ask for the name of a good ENT guy.......and I would let him/her know what happened with this other doctor. I would definitely follow up with someone else.

[TruBlu]

Good advice, Marsha. Thanks!

We are just a few minutes from Duke hospital. They did my recent surgery and saved my life. I think I'm going to try and get in with an ENT there.

[Mackey Mouse]

Now you are thinking.. that is where I would be heading a good teaching hospital.. Good luck, let us know..

[TruBlu]

This just hasn't been my week. DS7 has strep throat, DH is in bed with a sore throat (probably strep), and DS9 fell on the playground at recess today and broke both bones in his right arm. He had to have surgery tonight. We are finally home. Everybody is resting but me, so I think I'm going to bed too. Please say a prayer for us if you can.

Thanks! :)

[mommasita]

Oh my goodness, poor you. I will keep your entire family in my thoughts and prayers. :grouphug: I hope you all get some rest, and DS is not in too much pain.

[TruBlu]

Things have been a little crazy in my house, so I've not been on the boards much. Mommasita, any news?

I was watching Mystery Diagnosis today (an old episode I DVR'ed) and you'll never guess what the girl had..... the same thing I do!!! It has several names... her doc was calling it pseudo tumor something. It was a little scary for me to watch. She ended up having brain surgery. Hopefully mine wont get that bad. :guilty: BUT, on the positive side... her surgery worked and she was doing great!!! :)

[mommasita]

I see my Dr. on Thursday of this week. Thanks for asking. I am not around as much either. I am still home, but somehow just don't have the energy.

[TruBlu]

I see my Dr. on Thursday of this week. Thanks for asking. I am not around as much either. I am still home, but somehow just don't have the energy.If you feel up to it, please let us know how it goes. I'll be praying for you.

[The Orchid]

Oh my gosh, pulsating tinnitus is annoying beyond belief! I get episodes of it now and then. I find that having white noise helps. I always keep a white noise machine running in my bedroom AND a fan to drown out the pulsing. My ENT doctor said that the tinnitus is an internal noise and that the brain can't comprehend both internal noise and external noise at the same time. So he said to keep a TV on or play music by day, and at night use a fan or white noise machine. I need both to get rid of the freaking noise. Jeez, it really is annoying. You have my sympathy! :hug:

And I would seriously look into a second opinion from another ENT doctor. I'm sorry you're going through such a tough time. Ya gotta be able to trust your doctors. If you don't feel really good about them, it's time to move on. I had to fire my rheumatologist. He told me there was nothing else he could do for me and I was still sicker than hell and getting sicker! I told him "I'm 37 years old, that is not good enough!" So I found another rhuematologist who prescribed a drug cocktail that has changed my life. So I am a firm believer in second opinoins! I hope you find a doctor who is a better fit! Even if there really is nothing else that can be done, a good bedside manner is what builds trust and confidence.

Good luck! :flower3:

[mommasita]

Hi everyone. Just a little update if you will.

I saw my Dr. this morning for my results, and they do indicate MS. They are not going to say a definite Yes just yet. I need another MRI. I also was at the hospital later today for the EMG, and this indicated the same, with muscle loss, and a pinched ulnar (sp) nerve. The Dr. explained very well. My B12 is also critically low, and now I am on weekly injections of the B12, to do at home. :upsidedow . My husband did it, and now I am in some wicked pain..LOL. I was having the shots done by the Dr, and he wanted to see if it was helping, it did seem to go up, but after a month of no injections, it shot back down. So hopefully this will keep that on track :thumbsup2 . I have my results of the brain scan, and just have to stop reading it. I faxed it through to my insurance, as the Dr's don't want me to go back to work Monday, and tomorrow is the day my insurance was up. Hoping there is no hassle on that part, but am unsure. First time in my lifetime that I am experiencing anything like this.

I have a referral for another Neurologist, and need to place that call tomorrow. Today was just a wild wild day. My son left for a school trip to Quebec City for 2 days, and we had a wicked snow storm, and I was a very nervous Mom this morning. I had to bring him to school for 6am :scared1:, so I had to also bring my DD with me. Not an easy chore raising the troops at 5am, and then having all this today. Just both emotionally and physically exhausting.

Thanks for reading, if you got this far. I just wanted to updated you all. :grouphug: