Sjogrens World Forums

Sjogrens Topics => Living With Sjogren's => Topic started by: Scottietottie on May 26, 2022, 01:36:14 PM

Title: Waiting for test results.
Post by: Scottietottie on May 26, 2022, 01:36:14 PM
Hi 🙂
I've always found waiting for test results stressful. I've also complained about doctors not letting you know what they are testing for - and just say "wait for the results".
Recently I've discovered 2 who do tell you what they suspect and it's actually no better!

A neurologist arranged for an MRI of my head but said he didn't expect to find anything. I then got a copy of a letter he sent to my GP telling him he's suspecting Parkinson's. ( I don't have a tremor)
Yesterday I saw an ophthalmologist who is trying to figure out why I see double sometimes and she managed to cause my driving licence to be revoked. She said yesterday she would confer with the neurologist because she suspects the problem is in my brain, as although my eyes are dry - and will not now move properly, she doesn't think it's their problem.
I will get the results sometime within the next four months.
Have to admit .... I've felt happier.

Take care - Scottie.
Title: Re: Waiting for test results.
Post by: araminta on May 26, 2022, 01:52:34 PM
I'm sure we'd all agree it's horrible waiting for test results.   I'm really sorry you're having this stress.   A four month wait seems extremely long,I wonder why it has to be like that.

Sending you a big hug, and my best wishes.



Title: Re: Waiting for test results.
Post by: Scottietottie on May 26, 2022, 05:29:37 PM
Thank you. It may not be that long but there are huge back.it's here as a result of the pandemic - so timing anything is difficult.

Take care - Scottie
Title: Re: Waiting for test results.
Post by: Spring on May 27, 2022, 06:27:23 PM
I feel this is bloody awful waiting and wondering all this time. Sure hope it does not take that long. We are prisoners of time for sure. (((Scottie)))

Spring
Title: Re: Waiting for test results.
Post by: meirish on June 03, 2022, 08:26:04 PM
Scottie, I am so sorry to hear this. First of all waiting all this time is the pits. The whole world in on holding pattern due to the pandemic I think. Also, sorry as can be that you can't drive. Hope they figure this out sooner than later. We all fear that something will interfere with our driving when we get older and then when we have all these health issues it makes things worse for us.

I hope you are close enough to walk to some of your destinations!!! Keep us posted please. meirish
Title: Re: Waiting for test results.
Post by: Judie P on June 08, 2022, 12:05:20 PM
Oh, Scottie.  I feel for you.  I now have a neurosurgeon after working with 3 that were useless.  This one knows what he is doing and is working with me to get everything done that could cause an infection before he goes in and decompresses 5 vertebrae and fuse 6.  I will be losing 70% of my neck and head movement.  I hope that you don't get passed around like I have in the past.  Years ago my regular doctor thought I was crazy.  I promised to take prozac just to see a neurologist.  The neurologist said I was low in potassium and that was the problem.  Well, it was Sjogren's but it took a nurse practitioner to figure that out.  I did have to see the same neurologist for the latest tests in loss of grip (cervical spine problem) and I told him what I thought about him and his diagnosis years ago.  He was stunned, but apologized.  Stupid.

There should be something done about doctors that don't take their patients feelings into consideration.  Neurosurgeon's are the worst.  They have an attitude and don't understand feelings.  My current one is that way, but since he has an excellent reputation and does this type of surgery all the time, I am going to overlook it.

I hope the best for you!  Hugs!
Title: Re: Waiting for test results.
Post by: meirish on June 10, 2022, 08:05:42 PM
I live in independent living and a lady on my floor is a retired RN also and had pretty much the same surgery that you will have. Very little mobility in neck and lots of vertebra fused all the way down. She does amazingly well. She did take care of her husband some as he was in as assisted living with her. The staff did the heavy lifting but there was a lot she was still able to do up and to when he went into heavier care prior to his death this spring.

The amount of expertise that has been developed over the years for these surgeries is amazing. I had the C4C5 fusion and the pain was minimal. I would not be surprised that you will get along much better than you expect. The worst thing will be the sitting around waiting to heal. That always drives me crazy and it drove me crazy when I had my cataract surgeries 2 weeks apart. I couldn't bend over for several weeks and it was really difficult. I had to carry one of those pick up devices in my hand all the time I was up to remind me not to bend over and pick things up off the floor. We are such creatures of habit and if the pain isn't bad we have problems following some of the rules. Good luck and take care. meirish
Title: Re: Waiting for test results.
Post by: Scottietottie on June 21, 2022, 04:56:43 PM
Hi  :)

Eventually got a letter about the brain scan. It does not show any reason for my eyeballs being partially paralyzed but it did show moderate small vessel ischaemic changes. I googled that and it suggests that I am possibly heading for vascular dementia, Parkinsons or Alzheimers. Not there yet however.

now trying to arrange an MRI with contrast - to see if they can figure out what's going on with the eyes.

Take care - Scottie  :)
Title: Re: Waiting for test results.
Post by: meirish on June 21, 2022, 06:31:56 PM
Glad that you are not having anything right now. I would bet that all of us are in the line up for dementia/alzheimers, etc. Can't get through life and "older age" without getting some of this stuff.

I see I put a post on your site that should be elsewhere?? I had wondered where it went.

Have a good summer Scottie and stay cool, if possible. meirish
Title: Re: Waiting for test results.
Post by: Confused on June 23, 2022, 10:22:15 AM
Scottie,

I am so sorry for all that is going on with you.

Way back I can remember my Mom had gone through a spell of her eyes causing her to see double.  And the reason was.....she never knew.  She had seen doctors and at that time they did not have fancy machines and such.  She did not tell me until she had her eyesight back.

She had some of the weirdest ideas from different doctors.  The waiting is tortuous.  The good outcome must have been chocolates as that was the only thing she had daily and just a couple of small pieces. ;)

She was sure she was never going to be ok.  Life has more strange things that happen. 

Praying for you.

Title: Re: Waiting for test results.
Post by: susanep on July 23, 2022, 07:27:47 PM
I am glad you know more now. Someone once said if we live long enough we all will have some degree of dementia. I know I can't remember some things seconds later.
susanep
Title: Re: Waiting for test results.
Post by: deeindiana on July 26, 2022, 12:49:24 PM
I'm sorry you are dealing with this, Scottie. Here's hoping the answers come back quickly and they can figure out a definite, viable game plan. Please keep us posted.

And I would be very interested to hear what they think about your vision issue. In the last couple months I've noticed a similar thing that flares up maybe once or twice a week.

Sending you good thoughts!
Dee
Title: Re: Waiting for test results.
Post by: meirish on July 29, 2022, 09:44:08 PM
I had intended to post more to you but could not get on this site til now. I hope that you have been able to see another doctor and get more information. Sometimes the first info we get is not always the right info. WE all know that not all docs are able to figure a lot of our ailments out. Waiting to hear more as time goes on. Take care and good luck. Hope you are feeling better. Hugs, meirish