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Old 03-20-2010, 06:01 AM   #1
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Bit of an update

Hi everyone hope you are all doing well. I changed neuro's and saw the new doctor at the begining of March and he seems really on the ball and has ordered lots of tests. He checked the Mri films I had done with contrast and agreed with the radiologist that the high intensisity signal change picked up in the pons and cerebral white matter was not necessarily abnormal and could be inflamatory in someone with a history of optic neuritis, and no spine abnormality was shown. Just minor damage at C5/6 and C6/7. So this sounds like great news. I will be having SSEPS,DSEPS,BSAEP's,VEPs in April and a LP and appointment with a uriologist at some point.

My GP also sent me to the national Throat, ear and nose hospital and the I had my hearing tested which used to be really good around 18 months ago, now my right ear is low normal and my left is borderline deaf. I am having an MRI of my ears on Wednesday, although the ear surgeon having tested my balance, gait and ability to touch the top of her tuning fork and the tip of my nose with my eyes closed thinks it is a central nervous system problem and she thought it was MS, but was perplexed by my normal Brain MRI's. I am seeing her again in July, by which time we should have all the different tests results and conclusion or ideas from the neurologist.

My eyesight continues to slowly improve, as does my vertigo and balance issues, but the strange thing is that extremes of temperature really affects these symtoms. As does physical exertion, or a hot bath or shower.

I have also had some problems with numb patches on my left leg, and get pins and needles a lot in my feet and hands. My neck and left shoulder hurt quite a lot and I get pins and needles and shooting pains in my left arm, left elbow and left hand. Has anyone else had these issues and any ideas on how long all this might go on for. My employer has been very understanding but refuses to let me work until my GP says I am fit for work and my GP won't do this until we get a diagnosis and/or I have recovered my sight and no longer have vertigo and balance issues and this really knocked me back.

I am hoping that as the weather improves so will my symtoms and then I can go back to work. I am doing as much excercise as I can and eating healthly and wondering what else I can do to improve my health.

I am finding it hard to get my head around whats happening to me and wonder if I'm imagining it. I am really lucky that most of my life I have enjoyed excellent health and I keep thinking I will wake up and things will be back to normal. As you can probably tell I am feeling a bit sorry for myself today, I just wish I knew what was wrong with me.

Thats enough wallowing for now, i am going to snap myself out of this low mood by concentrating on the positive things in my life and by having a go on my daughter's WII which always has us both in fits of laughter.

Bye for now.

Tiffin

 
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Old 03-20-2010, 12:33 PM   #2
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Re: Bit of an update

It sounds like you are making progress. It can take the patience of Job to get through the diagnostic phase. Just give yourself one day at a time and do not beat yourself up!!

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Old 03-21-2010, 04:32 AM   #3
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Re: Bit of an update

Dear MSJayhawk

Thanks for the encouragement, it means a lot to me. I had convinced myself that I could go back to work last week and when my employer and GP said no it was hard for me to deal with it. I am feeling much more positive today and having somewhere to left of a bit of steam really helps.

Thanks

Tiffin

 
Old 03-21-2010, 10:43 AM   #4
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Re: Bit of an update

I can well empathize with you on your feeling. I tried to get a part-time online position for disabled persons and my neurologist said she could not allow me to do so. There are many opportunities to do things as a volunteer; therefore, your work will mean something to someone regardless of remuneration!
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Old 03-21-2010, 05:20 PM   #5
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Re: Bit of an update

Tiffin - I sympathize with your waiting in the discovery phase. I spent almost 16 months trying to pinpoint what was happening to me. I have been able to continue working (most days) which has been helpful to keep my mind off things and continue with as normal of a life as possible.

I have a lot of similar symptoms as you do. I spent many MANY vists at Yale's Hearing & Balance Center. I have a bilateral vestibular loss, which my MS Neuro is now calling my "first symptom". Have you had a VNG or a caloric water test?

Also I have the numb, throbbing, tingling left arm, my feet have that fallen asleep feeling, I get muscle fluttering in my left ankle, have a hard time doing anything physical when its warm...

Best of luck to you as you get through this hard waiting period!

 
Old 03-22-2010, 06:19 AM   #6
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Smile Re: Bit of an update

Quote:
Originally Posted by Wilc516 View Post
Tiffin - I sympathize with your waiting in the discovery phase. I spent almost 16 months trying to pinpoint what was happening to me. I have been able to continue working (most days) which has been helpful to keep my mind off things and continue with as normal of a life as possible.

I have a lot of similar symptoms as you do. I spent many MANY vists at Yale's Hearing & Balance Center. I have a bilateral vestibular loss, which my MS Neuro is now calling my "first symptom". Have you had a VNG or a caloric water test?

Also I have the numb, throbbing, tingling left arm, my feet have that fallen asleep feeling, I get muscle fluttering in my left ankle, have a hard time doing anything physical when its warm...

Best of luck to you as you get through this hard waiting period!
Hi Wilc516

It does sound as if we have lot of symtoms in common. So far I have just had my hearing tested and a few balance tests. I am having an MRI of my ears on Thursday and will see a balance specialist once the ear surgeon sees me again in early July. She wants my neurologist to finish all their tests before she sees me as she thinks it's ms, but she will still make sure I have all the tests including the ones you mentioned. Thanks for the encouragement.

regards

Tiffin

 
Old 03-23-2010, 06:26 PM   #7
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Re: Bit of an update

Quote:
Originally Posted by tiffin View Post
Hi Wilc516

It does sound as if we have lot of symtoms in common. So far I have just had my hearing tested and a few balance tests. I am having an MRI of my ears on Thursday and will see a balance specialist once the ear surgeon sees me again in early July. She wants my neurologist to finish all their tests before she sees me as she thinks it's ms, but she will still make sure I have all the tests including the ones you mentioned. Thanks for the encouragement.

regards

Tiffin
Good luck! July seems like a long way away but as long as you continue to check off all those boxes towards getting a diagnosis you are making progress.

Hang in there and keep your chin up

 
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