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   Reply Reply
LinkBack Thread Tools
Old 08-22-2013, 08:49 AM   #16
Member
(female)
 
dee7721's Avatar
 
Join Date: Jul 2013
Location: Lancaster, PA
Posts: 77
dee7721 HB Userdee7721 HB User
Smile Re: was told monday, probable MS

Hi, Froggy,
Even though I just joined this board, I can say that I'm so sorry that you having to deal with the same old, same old..."It's depression, it's all in your head, Let me give you a tall glass of 'suck it up.'"
I'm tired of SO many neuro docs telling me that I'm focusing too much on my health, & to have a positive attitude. I actually DO have hope...that one day I'll find a specialist that will LISTEN, & not tell me that I have somatotisation d/o.
I'm going to a new doc who is testing me for all sorts of problems, incl. Late stage Lyme Disease. I've searched the ILADS website, and I'm shocked to see that SO many have been diagnosed w/MS, & it turned out that they had Lyme. The symptoms are so similar.
Well, I'm giving it a try, going to a Lyme Literate M.D., but insurance doesn't cover the testing or treatment that's required, IF it is Lyme. At this stage of the game, I'll try anything! I was diagnosed with MS in 1998, but moved from TX to PA, where they made me go through all the testing again.
I'm not telling you to search out Lyme Disease...that's just where I'm at, now.
I wish you, not just luck, but I'm praying for you. (As well as all those who are writing their stories on this site.)
God Bless

 
Reply With Quote
The Following 2 Users Say Thank You to dee7721 For This Useful Post:
froggie91206 (08-22-2013), shahila (08-22-2013)
Old 08-23-2013, 08:35 AM   #17
Junior Member
(female)
 
Join Date: Jul 2013
Location: queen creek
Posts: 46
froggie91206 HB User
Re: was told monday, probable MS

Quick question, I am very happy that I got a med change and an MRI but my mom is concerned that he only ordered it of the brain and not of the c and t spine also with contrast. And she had to tell him it needed with and without contrast too! Ugh, general neurologists need to be a little more educated. So my question is, can you then show no lesions on the brain but have them in the cervical or thoracic spinal cord? Just wondering if him not being thourough enough could cause him to misdiagnose

 
Reply With Quote
Sponsors Lightbulb
   
Old 08-23-2013, 09:05 AM   #18
Facilitator
(male)
 
Join Date: Sep 2007
Location: Kansas, USA
Posts: 8,401
MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: was told monday, probable MS

Quote:
Originally Posted by froggie91206 View Post
Quick question, I am very happy that I got a med change and an MRI but my mom is concerned that he only ordered it of the brain and not of the c and t spine also with contrast. And she had to tell him it needed with and without contrast too! Ugh, general neurologists need to be a little more educated. So my question is, can you then show no lesions on the brain but have them in the cervical or thoracic spinal cord? Just wondering if him not being thourough enough could cause him to misdiagnose
Good question. The brain is generally the main site for lesions for MSers- BUT there is no guarantee. Yes, you can have lesions present on your c-spine or t-spine. I have lesions on my brain, c-spine, and since 2002, my t-spine. IF there are no lesions on your brain, please read up on Devic's Disease. It is rarer than MS and the treatment is different.

A general neuro often lacks sufficient experience with MS and may not have been exposed to MS if it was not included in their medical rotations. There are some general neuros who are worth their weight in gold. I would encourage you to try to find an MS Specialist to review your situation because you need answers.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Reply With Quote
The Following User Says Thank You to MSJayhawk For This Useful Post:
froggie91206 (08-23-2013)
Old 08-23-2013, 09:25 AM   #19
Junior Member
(female)
 
Join Date: Jul 2013
Location: queen creek
Posts: 46
froggie91206 HB User
Re: was told monday, probable MS

Thank you, that is what my mom was thinking too. Her specialty is strokes and brain tumors so this is out of her realm. She did though, spreak with her friend who is an MS research nurse and she told my mom that they should have ordered the c and t spine with contrast too since we only have one of them without. I will look up the other disorder you mentioned too. So I guess at this point, my moms friend said that if I continue to have this creep through my body, leaving the body parts in a "less than" state after the intensity has subsided and moved to a new place, ie my mouth now, then she will get me in with the MS specialist regaurdless of what my MRI shows. So does that mean you can have it without lesions being present????? All I know is I just want this to stop soon and get back to work. Being at home all day is BORING!!!!!

 
Reply With Quote
The following user gives a hug of support to froggie91206:
Whimpurr (08-23-2013)
Old 08-23-2013, 09:45 AM   #20
Facilitator
(male)
 
Join Date: Sep 2007
Location: Kansas, USA
Posts: 8,401
MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: was told monday, probable MS

Froggie91206,

Among MSers, there appears to be about 5% who do not present with lesions initially. Under the current accepted criteria for diagnosis of MS- Revised McDonald Criteria- at least two lesions need to be present for a diagnosis (in addition to other criteria). I will tell you that an MRI which might appear to be clear to a general neuro could speak volumes to an MS Specialist. Many MSers who have wandered the waste lands of limbo might have shortened their journey by seeking out the consultation of an MS Specialist.

If you have current symptoms presenting, an MRI with and without contrast would be even more important because the contrasting solution can "light up" active lesions, some of which might otherwise be missed.

I would encourage you to make an appointment with an MS Specialist today.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Reply With Quote
Old 08-23-2013, 01:37 PM   #21
Junior Member
(female)
 
Join Date: Jul 2013
Location: queen creek
Posts: 46
froggie91206 HB User
Re: was told monday, probable MS

Thank you sooo very much. All of this info is greatly appreciated. Just trying to sort things out in my head, it is a bit overwhelming right now.

 
Reply With Quote
Old 08-23-2013, 03:25 PM   #22
Facilitator
(male)
 
Join Date: Sep 2007
Location: Kansas, USA
Posts: 8,401
MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: was told monday, probable MS

Froggie91206,

No worries. I would print a copy of the Revised McDonald Criteria and refer to it as you are being diagnosed. You can find it online and the MS Association or Society office in your area might also have a copy.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Reply With Quote
Old 08-29-2013, 09:53 AM   #23
Junior Member
(female)
 
Join Date: Jul 2013
Location: queen creek
Posts: 46
froggie91206 HB User
Re: was told monday, probable MS

MSJayHawk, thank you for sharing all of your knowledge on this, it has really heped me navigate through this time. Tomorrow is the day for me to get my MRI, ad hopefully sometime next week my mom will hear from her nurse friend about the new MS specialist that will be at Barrows in a few short weeks. The plan now is to get her first available appointment, regaurdless of what general says, and have have the specialist look over my MRI. My mom really has been so greatful to this board to, because she has seen me relax a little more since being able to have a place to vent and get support from others who really get it. Praying that insurence doesn't pull what they did for my cervical mri, and has authorized it already. Again, thanks.

 
Reply With Quote
Old 08-29-2013, 11:16 AM   #24
Facilitator
(male)
 
Join Date: Sep 2007
Location: Kansas, USA
Posts: 8,401
MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: was told monday, probable MS

Froggie91206,

That is some great news. If you can see the new MS Specialist, I think it will open the way towards your exiting limbo land! Good luck tomorrow. Whatever the results, I would still see an MS Specialist.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Reply With Quote
Old 08-29-2013, 09:08 PM   #25
Junior Member
(female)
 
Join Date: Jul 2013
Location: queen creek
Posts: 46
froggie91206 HB User
Re: was told monday, probable MS

Of course, limbo land continues. Insurence has requested more info to go to medical review before the will authorize it... I thought maybe this once I would catch a break, but no such luck. Praying for patience.

 
Reply With Quote
Old 08-30-2013, 08:47 AM   #26
Facilitator
(male)
 
Join Date: Sep 2007
Location: Kansas, USA
Posts: 8,401
MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: was told monday, probable MS

Froggie91206,

Sorry to hear of your insurance hurdles. I am keeping you in my prayers.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

Last edited by MSJayhawk; 08-30-2013 at 08:48 AM. Reason: typo

 
Reply With Quote
Old 08-30-2013, 02:09 PM   #27
Junior Member
(female)
 
Join Date: Jul 2013
Location: queen creek
Posts: 46
froggie91206 HB User
Re: was told monday, probable MS

I have a question for you. So when I was first put on the gabapentin, it was done over 3 weeks before they got me to 300 3x a day, beginning with 300 at night one week and then 2 doses the 2nd week and so on, then when I went to my appt last week, they doubled it to 600 3x a day, overnight. I asked about if I needed to do just one of the doses at 600 for a few days, then 2 for a few day and then 3 so that is was a slow increase and they said because of my symptoms no. Well here I sit, having called my old psychiatrist, worried that I was going crazy, because I am so incredibly agitated the past few days, yelling at my son for stupid things, completly out of character for me and crying a lot, something I never experienced before, even when I was depressed. He asked about my health and I told him about the meds and he seemed very concerned in the sudden increase and stated to not take my next dose until I talked with neuro because that is more than likely the cause of this anger/agitation. I have since placed the call and am waiting on a call back. Is this anything you know about????Just wondering if doubling the doses so quickly is standard or not. Thanks

 
Reply With Quote
Old 08-30-2013, 08:04 PM   #28
Facilitator
(male)
 
Join Date: Sep 2007
Location: Kansas, USA
Posts: 8,401
MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: was told monday, probable MS

Froggie91206,

You need to continue the dosages as the prescribing doctor ordered, BUT BUT BUT tell them what the Psychiatrist told you as it could well be linked to the meds. After being on a high dose, you do not want to quit abruptly and you need to be weaned off the Gabapentin (Neurontin). Adverse reactions can happen if you suddenly stop. Your prescribing doctor is responsible for you in this situation. You might ask a family member to help you with your child until you can get back to "normal". When my youngest was still a toddler, I would have to remove myself from the rest of the family as to spare him from any emotional outbursts. I still find the solitude helps me to cope and rest my mind and body.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Reply With Quote
Old 08-31-2013, 07:36 PM   #29
Junior Member
(female)
 
Join Date: Jul 2013
Location: queen creek
Posts: 46
froggie91206 HB User
Re: was told monday, probable MS

So today is MUCH better. I talked with a nurse at the neuro office and she said that the resident NEVER should have done that and it was ABSOLUTELY medication induced. She told me to take only 300 for the rest of the day and then starting today only 300 in the morning and afternoon and 600 at night. She said she would be contacting the attending and informing him of this HUGE mistake. Just so glad that I have someone from my past who was able to lead me in the right direction. It is amazing what dropping it down has already done for me. So according to the nurse I should be only increasing each dose weekly. After what happened before with this same resident trying to get me to say I was depressed due to a past history of it and blaming my symptoms on that, when I am not, and then to mess up with my meds so incredibly much that is had such a negative impact, I am going to call next week and request that I have an appointment with only an attending in the office. I refuse to be a guniea pig for him any longer. Well, time to get back to boardgames with the boy and enjoying this 3day weekend with him. Thanks so much for letting me vent and for the support. Have a great weekend!

 
Reply With Quote
Old 08-31-2013, 09:54 PM   #30
Facilitator
(male)
 
Join Date: Sep 2007
Location: Kansas, USA
Posts: 8,401
MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: was told monday, probable MS

Froggie91206,

Great update. I am glad for your positive direction. Keep self advocating; you are moving in the right direction and your venting- always welcome. Believe me, we understand.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Reply With Quote
The Following User Says Thank You to MSJayhawk For This Useful Post:
froggie91206 (09-01-2013)
Reply Reply




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 (994), MSNik (522), Snoopy61 (58), Whimpurr (13), J-one (13), shahila (12), JodiH (11), MS22 (11), KingBaxter (10), Gullyabb (8)

Site Wide Totals

teteri66 (1164), MSJayhawk (999), Apollo123 (898), Titchou (833), janewhite1 (823), Gabriel (758), ladybud (747), sammy64 (667), midwest1 (665), BlueSkies14 (610)



All times are GMT -7. The time now is 05:07 AM.



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