I'm starting to get worried :(

[Debbie C]

I don't believe it but I think I just deleted everything I wrote. I will try again but I need to make this quick because I have to lay down. I have been getting so hot that sweat will roll of me ,but no fever. I have been through menopause so that's not it. I was at the er a couple weeks ago and he did bloodwork,chest x-ray, and a ct scan of my pelvic and abdomen but all came back good. But I am getting worse. I have almost past out 3 times, the lastest was Sunday at church. My lung dr has me going tomorrow to get a v-scan (?) of my lungs since I am also having a hard time breathing to rule out blood clots . I am sooo dizzy that I am afraid to drive anywhere. Thurs ,I have to have an mri of my brain. I don't know what the hell is going on with me but I am getting worse and scared. I cannot gain weight, I am now at 98 lbs. They are coming tomorrow to check our water because it is coming out rusty. A lot of people in our area are having that problem so maybe its the water. I don't know but I am TRYING to stay strong as I stagger around the house like a drunk holding onto walls. Anyone have any ideas. I hope this isn't posted twice,if so Andrew can you delete one :scared:

From previous double post [VW] -- For about the last month and 1/2 I have been getting very hot ( like having hot flashes---but I'm way past that ) and for the past few weeks I am sooooo dizzy that I have almost past out 3 times. The lastest was Sunday when I was at church. I went to the er a couple weeks ago and they did bloodwork , a chest x-ray and a ct scan of my pelvic area because at the time I was also having stomach cramps. Everything came back fine so I was released with unspecified dizziness.
I am know so bad that I am afraid to drive anywhere, I have to hold on to walls when I walk. My lung dr. ordered me to have a v-scan (?) of my lungs tomorrow to rule out blood clots and Thurs. I have to have an mri of my brain and I will repeat my monthly bloodwork. I don't know what the H*** is happening to me but I am getting worse. We are getting our water tested in the morning because it has been coming out rusty and a lot of people are having the same problem , so maybe its the water ??? I don't know anymore since my bloodwork is coming back fine. But I am now getting scared but TRYING to keep calm as I stagger around like a drunk. Anyone have any ideas ??? http://www.wegeners-granulomatosis.com/forum/images/smilies/RpS_scared.gif

[drz]

I don't believe it but I think I just deleted everything I wrote. I will try again but I need to make this quick because I have to lay down. I have been getting so hot that sweat will roll of me ,but no fever. I have been through menopause so that's not it. I was at the er a couple weeks ago and he did bloodwork,chest x-ray, and a ct scan of my pelvic and abdomen but all came back good. But I am getting worse. I have almost past out 3 times, the lastest was Sunday at church. My lung dr has me going tomorrow to get a v-scan (?) of my lungs since I am also having a hard time breathing to rule out blood clots . I am sooo dizzy that I am afraid to drive anywhere. Thurs ,I have to have an mri of my brain. I don't know what the hell is going on with me but I am getting worse and scared. I cannot gain weight, I am now at 98 lbs. They are coming tomorrow to check our water because it is coming out rusty. A lot of people in our area are having that problem so maybe its the water. I don't know but I am TRYING to stay strong as I stagger around the house like a drunk holding onto walls. Anyone have any ideas. I hope this isn't posted twice,if so Andrew can you delete one :scared:

Your posts are still here. The MRI is the best way to assess your problem.

From previous post [VW] -- I had problems with my balance and being unable to drive for awhile cause when I turned my head the world kept spinning. I had a granuloma in inner ear that destroyed my hearing and impaired my vestibular function on that side too. Vestibular rehab helped me but my balance remains impaired from the damage and increased neuropathy in feet too. i am doing PT again for this issue and it helps a little.

[vdub]

Do I remember correctly that you are on levothyroxin? Seems you mentioned that at one time. At any rate, see if your blood tests already have a thyroid check. It would be something like "Free T4". Sounds kind of thyroid-like to me.

-- I think I took care of the double-post problem. Looks ok now, but let me know if not.

[Debbie C]

vdub...How are you ?????? I hope the pacemaker is working well. Thx for taking care of the double posting, No I am not on that drug. And no my bloodwork does not consist of Free T-4 or anything to do with my thyroid. I will mention it to my doc to check'
drz..I never heard of getting a granuloma in your ear. I hope the pt helps you. That is how I am feeling like I can't even put my head down to write
This just goes to show you ,you don't ever know what to expect from this freakin desease

[vdub]

you don't ever know what to expect from this freakin desease
Got that right! Surprise every day....

[mishb]

Deb, I hope you have someone to take you to your appointment tomorrow.

It does sound thyroid or even a problem inside your ear.

Gosh I hope you get some answers quickly because I don't like you sounding so worried.

Big hugs to you and maybe vdub will share some of his bubble wrap with you :hug1:

[Debbie C]

Thanks Mish,usually my boyfriend has been driving me but today i am on my own. I hope they find something soon. I just weighed myself this a.m. and now I am at 97.6 ibs. I can't keep losing weight and the thing is I have been eating good.And this sweating thing just comes up at of the blue. I know with the holidays I can not get in to see my ent.
Whatever is going on does have me very worried since I have been doing so well for so long. I guess its my turn. Yea I could use some of that bubble wrap right now !!!!
Hope you have a great day. It sounds like you two really did a make-over on your house,You'll have to post some pics

[Jaha]

Deb, I'm hoping that they did out what is going on with you asap. I know you probably can't get to CC,but can you have your Doc there contact CC for suggestions about what tests to run on you? Have they mentioned a Cardiologist doing a work up on you? I am praying that you will get some answers soon. Sending you hugs and strength!

[rebekah]

I hope your appointment goes well, and they can figure out what's wrong soon. My friend sweats and gets dizzy when her thyroid levels are off, so it could be your thyroid. I'd have your doctor check just in case. Hopefully whatever it is, you can get it figured out and feel better soon! Please keep us updated on how your tests go. :)

[Debbie C]

Well I went today and had a vq scan of my lungs and there are no clots !!! Called my ent and he faxed over a script to have my thyroid cked so I got all my blood and urine cked today also so I will have those results tomorrow. I am supposed to have in mri of my head done then also. And yes Jana ,I went to my cardio the other day and had an echo. My dr from CC said as soon as they fax the results to her she will call me. So I am getting everyone involved before it gets worse. I also have an appt. to see a psychiaitrist (sp ?..looks right but I know its not !!!) since every dr. keeps saying its my anxiety then I better get some good drugs so they can't use that excuse !! OHHHH and for the last month our water has been coming out of the faucets with a rusty color. So I had the water dept come out this morning and take a sample to test and he called this afternoon and the clearness of the water came back at 4.5, he said lake water is 5 !!!! He said if was him he would not drink it. Needless to say I called the water dept., the sanatation dept. and also e.p.a. They said they will come out and do another test for the bacteria for free (I guess that costs $ 50.00 ) and also put us on a list to flush the hydrant by our house regularly.They promised do to whatever it takes to get our water clean. I doubt it because our neighbors and other parts of the city are the same. But I will sue the city if I don't get something done. I am on a mission ! Well theres my update....more to follow !!!!

[mishb]

You go girl :thumbsup:
Never stand in the way of a sick girl or a girl on a mission, and you are both :thumbup:

Deb, I'm not sure about sending you the bubble wrap, because I have a better idea. You can have my prednant belly, anytime you want.
Unfortunately, it also comes with daily/hourly sweats (Yes, a combination of thyroid and menopause)
Certainly know how the jockeys feel.

Sending lots of healing vibes, and also big hugs your way, and I hope tomorrow gives some better answers :hug2::hug1:

[Alysia]

Deb, I am sorry for your agony. No idea what it can be.... maybe vertigo ?
please dont drink those water. Buy mineral water. Also dont let anyone tell you that it is caused by anxiety. No wonder one feels anxiety when suffers all these but it is NOT anxiety itself.
Hang in there. Sending prayers and love. Please update us.

[Debbie C]

Well my latest update is that all my blood work came back good. Even my thyroid ( which at this point I was hoping that was it.) My calcium level is at 10.1 which is up but CC said she will keep an eye on it. I don't know the results of the mri,probably after the holidays I will find out. I could go and get a copy of the report but I will wait. I saw the pysch. today and she put me on prozac . My CC dr. mentioned I may have an ear infection or vertigo also but the soonest I can see my ent is Jan 21st. I see my worthless pcp on Jan 12th so I will see what he says.
On the other note the water co. came out and flushed our hydrant twice today and took another sample and both guys from the water and sanatation dept called to give me updates and said they are still on top of things.

Now that I have done all the tests I can do for now and am getting the water under control...I am going to sit back and enjoy the holiday. I won't even need any drinks the way I am...cheap date !!!!


Hope everyone has a GREAT Christmas or what ever holiday you celebrate. And I will be praying for everyone to have the healthiest NEW YEAR ever. Take care my friends :love:

[Pete]

Merry Christmas, Debbie!! Hope 2017 brings better health (and local docs)!!!

[ST316]

Hi Deb
You have a lot of symptoms that resemble onset of MS have you discussed this with your Drs?
-Susan

[Debbie C]

Hi Susan... I don't even want to think about that one. Right now I am hoping on in ear infection and the stress of everything right now. Hoping after the holidays are over and I can relax more I will start getting back to normal
Hope you have a great holiday.

[Debbie C]

Well I have gotten the result of the mri of my brain and it shows that I have mild to moderate chronic microvascular ischemic disease with a left parietal periventricular white matter mass measuring 1 cm. That's a mouthful !! I spoke to my dr at CC and she is waiting for the disc. I had the hosp. send her. I am still very dizzy and get sharp pains on top of my head and now my eyes seem to get blurry. I think I will be adding a neurologist to my list of drs. soon. The pysch I saw put me on Prozac but the way my head is now I don't want to start something new until I really know whats up. I tried doing my yoga to try to relax and distress but I can't do to dizziness. :(

[Pete]

Hi Debbie,

I think adding a neuro to your team is wise. One of Dr Villa Forte's best friends is Jinny Tavee, a neurologist at CC. She did my nerve conductivity study and electromyogram last fall. I thought she was very nice. Hope you get what you need there.

[Alysia]

Well I have gotten the result of the mri of my brain and it shows that I have mild to moderate chronic microvascular ischemic disease with a left parietal periventricular white matter mass measuring 1 cm. That's a mouthful !! I spoke to my dr at CC and she is waiting for the disc. I had the hosp. send her. I am still very dizzy and get sharp pains on top of my head and now my eyes seem to get blurry. I think I will be adding a neurologist to my list of drs. soon. The pysch I saw put me on Prozac but the way my head is now I don't want to start something new until I really know whats up. I tried doing my yoga to try to relax and distress but I can't do to dizziness. :(

Dear Deb. It's a lot to handle. I am sorry. I googled those and if I understand correctly, it is important to find out the causes. They mentioned for example high bp. I wonder if it is wg related. Because if it is, then once you get wg treatment, you can prevent more damage and maybe even reverse some ?? Not sure but worth checking.
I suggest you to start here a new thread about brain issues. There are some friends with brain involvement who might give some good info and or advices. Also if its not wg related.
I know that you couldn't bear wg meds but there are new meds which might help if this is the case.
Hang in there and please update us. Keeping you in my prayers. Sending gentle hugs ♡♡♡

[greenjeep]

Debbie, I do MRI for a living. I'm no Dr, but a tech. I do not know your age but the microvascular disease is a fancy way of saying aging. it's nearly on 100 percent on the MRI I do on people over 60. our brains shrink as we age.
the mass is also probably nothing. the radiologist would have followed up or advised more testing if it was scary looking. but... I'm no Dr, and of course have not seen the exam, but try not to get too wound up yet. did they give you a shot during the Mri?

Sent from my SAMSUNG-SM-J320AZ using Tapatalk

[vdub]

Good comment, GJ! Its always nice to see comments from people who are actually in the medical field. I have found that the techs often know as much about their specific area as the doctors do. I normally try to verify comments on the forum, so I looked up microvascular disease and you are spot on -- its basically and old age issue. I hate to admit that I'm getting old. When I was 40 or even 50, "old age" seemed so far off, but somehow it has caught up to me.
https://www.nhlbi.nih.gov/health/health-topics/topics/cmd/causes

[Debbie C]

Thank you greenjeep for politely telling me I am getting old !!!! I am 60 1/2 !! My rheumy looked at the disc and said she sees that a lot and she doesn't think it is wg related and the mass is from a infarctic stroke I had about 6 years ago. I never knew I had a mass from it though ?? But she was going to have her people look at it so I quess all is well since I haven't heard back. Your job would be interesting to do..and yea they gave me a shot.

[greenjeep]

only as old as you act... right. I tell some people I work with that I'm older than they are (even though they were born before me) cause this disease has taken years off my life.
a stroke leaves behind an area of damaged tissue like a scar. it will be there forever. they just call it a mass because it is a generic term.
since they have you a shot, you can bet that this mass is not trouble or it would have lit up and they would have spent a paragraph describing it!
so rejoice! it's good news!

Sent from my phone while pondering the limitations of the subconscious infinitude

[Debbie C]

:hug3: I'm rejoicing !!! Thinks for the info. I always try to get info from the techs but they never will say anything, I understand that you can't