It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Multiple Sclerosis Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 05-06-2012, 05:24 PM   #1
Junior Member
(female)
 
Join Date: May 2012
Location: Florida
Posts: 12
bha320 HB User
DESPERATE for advice, docs won't listen...

Hello, this is my first time posting on this site. I have had chronic health issues for a long time, but until ow I felt that I had them under control. We recently moved to FL from CA, and so I am in the process of not only transferring old files but also finding a doc who will help me. I have been to the ER twice for this and had a consult with a new neuro- they all blamed my trigeminal issue, and won't consider doing any more tests for MS- which I was told five years ago I would need ot be retested anyways. Here are my symptoms, any advice?? THANK YOU. I am feeling so helpless, even standing up to all these docs is leaving me drained..



Sunday 5/5/12:
-bowel spams but also inability to go at the same time
-No help from restarting meds, makes me think that it's not a med issue.
-All the same symptoms going on together, worse in evenings

Friday 5/4/12:
-last night's symptoms plus arms not coordinating together
-blurry vision

Thursday 5/3/12:
-hot flushed feeling but skin was cool, no sweat
-sharp nausea, not queezy, not motion sick, only nauseated when eyes closed
-shuffling gait, when I would extend my right leg all of the muscles on my left leg and trunk would constrict so it caused a herky jerky look while walking, and vice versa with left side
-brain feels SWOLLEN, eyes feel bulgy

Tuesday 5/1/12
-spontaneous deafness in left ear with high pitched ringing
-40 mins later left trigeminal nerve branch II tingled and contracted left cheek muscle, I looked like I was snarling, then it spasmed and stopped lasting about five minutes
-BP shot up to 148/111 (probably from anxiety of course)


Over the last month:
-increased muscle jerks in all limbs
-feels like my nerves are itching and the only way to calm this is to stretch and contract affected muscle goup, this is SO BAD that I cannot move ertin muscles now due to utter exhaustion
-increased postural BP changes
-smelling phantom smoke (phantosmia)
-bladder insomnia but leaking at night (may be levator ani spasm again)


Meds changes:
-went back on baclofen Sunday, in high doses it is the ONLY med that helps
-tried to go back on norco but it causes headaches so I avoid it now
--ibuprofen affects postural BP so I only take it as a last resort
-thyroid meds D'c 3/25/12 due to causing illness and suspected not needed (levels have always been within range), but as of 5/4/12 I am back on it but it doesn't affect symptoms either way.
-two consecutive z-packs middle of April, then now 20 mg Doxy. once a day for tooth infection (trying to get into dentist asap since ins now is active)
-I had D/C benadryl due to akathisia, but I went back on it for allergy issues, this time no akathisia because i am taking a lower amount


That's the new issues... Does not include any chronic issues, which I feel that these issues are seperate from the chronic issues or possibly a new manifestation of chronic issues..? Everything I have found points toward MS or early Parkinsons... I do have a history of complex migarines and both typial and atypical trigeminal neuralgia and possible glossopharyngeal neuralgia. I also have small random white focal pattern spots on am MRI from October 2011.
Thanks for any help... Need any more info?? Hugs, Emily

 
Sponsors Lightbulb
   
Old 05-06-2012, 07:20 PM   #2
Facilitator
(male)
 
Join Date: Sep 2007
Location: Kansas, USA
Posts: 8,126
MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: DESPERATE for advice, docs won't listen...

Welcome.

There are major differences between Parkinson's and MS. Parkinson's can easily be tested. You might see a neurologist who specializes in Parkinson's first and then have them refer you to an MS Specialist.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Old 05-07-2012, 03:26 AM   #3
Facilitator
(female)
 
Join Date: Sep 2006
Location: USA
Posts: 8,544
MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
Re: DESPERATE for advice, docs won't listen...

You might also take into account that not one of your symtoms is specific to any disease. For instance, the signs of MS, if looked up, also fit 400 other diseaes......making your chances one in 400 of having MS...

Your not screaming MS in symtoms. Youve been told that you dont need to be retested because you dont have MS signs. Why are you thinking the worst instead of celebrating?

I think anxiety is causing many of the problems you stated, including the bowel issues , gait isues and bp issues; although high bp an be a sign of something else (not Parkinsons or MS). You just went through a major move and obviously are feeling some stress from it. NOt knowing what is wrong is scary, but nothing you stated here sounds like MS or PD. Both diseases can be discussed with a Neuro, both diseases start out with MRIs...if the neuro doesnt think you need one, then why do you?
Nikki
__________________
RRMS- dx 05

 
Old 05-07-2012, 07:06 AM   #4
Junior Member
(female)
 
Join Date: May 2012
Location: Florida
Posts: 12
bha320 HB User
Re: DESPERATE for advice, docs won't listen...

Thanks MSJayhawk, I didn't think about that approach...

MSNick, I don't find your message very helpful nor encouraging. I have moved around quite often in my life and know the symtpoms of anxiety, seeing how I have dealt with panic attacks before. I should note that this doctor also said I am faking anaphylaxis when taking migraine medications, which is physically impossibel to do. That is the level of care here...he didn't even do a physical exam. As soon as they process my ins info I am booted out. When I lived in CA and had a consult at Stanford, the neuro professor there dx me with complex neuro issues that needed continual monitoring. I find your comment about celebrating rather condescending- I would like for you to explain how I am supposed to be happy that I am ok, but meanwhile I cannot hear nor use my limbs in coordination? This was my first time posting on these groups, not sure I will be back.

 
Old 05-07-2012, 07:19 AM   #5
Facilitator
(male)
 
Join Date: Sep 2007
Location: Kansas, USA
Posts: 8,126
MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: DESPERATE for advice, docs won't listen...

If you need to find an MS Specialist, you can inquire with your local MS Association or Society office. The MS Clinic I go to is located within the University of Kansas Medical Center and they have specialty wings for various neurologists. I know several others which are similar. You might find this in Florida too, especially at a teaching university. I used to take my mom with me so she could go to the Parkinson's section while I saw my MS Specialist. If Parkinson's is suspected, treatment for it as early as possible is important. They did not catch my mom's for at least 10 years, but much of this is because she was always too busy to stop.

If you need more support or help, please ask.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Old 05-07-2012, 04:30 PM   #6
Facilitator
(female)
 
Join Date: Sep 2006
Location: USA
Posts: 8,544
MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
Re: DESPERATE for advice, docs won't listen...

bhamilton320,
I will apologize to you and offer sincere apologies for offending you. You obviously read into what I wrote and didnt like it. I am sorry.

What I am reading, is that you have been told you do not have MS, nor is it worth being checked for. And, I meant it, if someone had told me that- I WOULD be celebrating. Having MS is no picnic at times...

And, you listed your symtoms, almost all of which are muscular, some of which are muscular related- such as the bowel problems and the trigeminal related issues- none of these things are MS like in nature. When you have MS, and you have bowel or bladder problems, they present entirely differently than you are describing. But apparently, you think differently and have the right to.
As for my comment about Anxiety- you do sound like you have anxiety- even if its not causing your issues, its a very real diagnosis. It doesnt mean you are crazy and I didnt suggest any such thing. It sounds to me that you are frustrated from not being taken seriously and angry at the fact that you arent getting what you think you deserve from the medical facility which you went to- that would and should cause anxiety.....and that feeling, can cause additional bladder and bowel problems and trigger Trigeminal attacks...

So, Ill bail out and hope that you find a doctor who will take you seriously and offer you the testing you seem to be wanting. I do hope that you feel better soon....and I am sorry for offending you.
Nikki
__________________
RRMS- dx 05

 
Old 05-20-2012, 10:01 AM   #7
Newbie
(female)
 
Join Date: May 2012
Location: Florida
Posts: 3
1Frenchie HB User
Re: DESPERATE for advice, docs won't listen...

I'm in Fl and I'm sorry it's not been a good experience medically. Lack of interest from Drs is too common today. A GOOD neurologist should hear you and look at issues before choosing to label them with a disease. Personally I feel drugs can mask more than help and also add more problems which need more drugs. I hope you find your match soon.

 
Closed Thread




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



MSJayhawk (937), MSNik (497), Snoopy61 (55), J-one (13), Whimpurr (13), shahila (12), JodiH (11), MS22 (11), KingBaxter (10), Canadian gal (10)

Site Wide Totals

teteri66 (1136), MSJayhawk (941), Apollo123 (857), janewhite1 (823), Titchou (773), Gabriel (743), ladybud (667), sammy64 (666), midwest1 (655), BlueSkies14 (610)



All times are GMT -7. The time now is 12:11 PM.



Site owned and operated by HealthBoards.com™
Copyright and Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!