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



Neurology Message Board
Post New Thread   Reply Reply
LinkBack Thread Tools
Old 12-03-2010, 12:29 AM   #1
Junior Member
(female)
 
Join Date: Dec 2010
Location: PA
Posts: 15
barelracer HB User
Unhappy Please, I just want answers...

Hello, I am a 38 yr old widowed mother of one son, who was once, prior to 8 months ago, a very active healthy individual. I have had weird moments on and off for a few years, insomnia, headaches,severe fatique, had cts for possible appendix problems, gall bladder tests several times,and what was diagnosed as gout in my right foot, but never slowed down, and resisted seeing my doctor unless I was in excruciating pain. In april, I was very uncomfortable in my lower abdomin(sp), and discovered I had POP (pelvic organ prolapse, of the bladder and uterus).. thats how it all started anyway...having no insurance, nothing could be done, and 2 weeks later, the joint pain started, hands, wrists, and hips at first. Found a way to cover some medical tests, and had rounds and rounds of bloodwork and xrays! results: high MCH, high CRP, high ALT/AST, positive ANA with nucleolar pattern, occasional low RBC. CT showed granuloma's in left lung, mild scoliosis, and degenerative arthritis in my back(mild). GI dr found "nothing remarkable", gyno gave me a hysterectomy, and rhumatologists#1 said I had depression, #2 said fibromyalgia (the joint pain was worse, and spread to mucsles) a month after onset I started having multiple fevers everyday, 99 to 102, mostly at night, no one knows why these happen, though they are worse after activity. I quit woring in June, it got that bad with pain, and Rumatologist #2 sent me to Phys Ther., where they found what they suspected was nerve damage, and lack of reflexes, both arms. In Sept., I suffered the WORST headache EVER, with vomiting, no control of my limbs, couldnt talk, couldnt see...but did not go to E.R.,as the doctors already made me feel like I was a hypochondriac...but found that now my memory is SHOT, I sometimes have trouble comprehending what is being said to me, and struggle sometimes to "find the words", as well as mood swings which are alarming to say the least!Also since then, if I walk to much, or have a fever, my right leg will hurt at the hip, and stop working sorta..I have muscle weakness in all 4 limbs, mostly arms,and I cant feel the current of the electric fence (no shocks), while my friends get knocked on they're tucus's by it! I still have headaches, all the time, and when I followed up with my PCP, (he's suspected an autoimmune disorder the whole time) he ordered an MRI and EEG, which ultimatly showed a "possible lacunar infarct" and possible "demylinating"(sp) disease(EEG was normal)...he quickly referred me to a neurologists, who I saw today. She says she actually read the EEG, and proceeded to tell my boyfriend ALL about it(she didnt talk to me directly at all!) until I interupted her and asked about the lacunar stroke thing, which she replied she "could not help me with", couldnt tell me why, or if I may have another, etc., nothing!! AND stated that there were NO OTHER tests to help me!(though she did say she thought my stroke was "silent" and no relation to my memory, pain, or nerve problems.) she then suggested I go back to my doctor for treatment. Isnt a nuerologists supposed to help with these exact problems? I have no idea what is wrong, my PCP suggested MS or Lupus, but no one else seems to wanna bother testing for these???

 
Reply With Quote
The following user gives a hug of support to barelracer:
sjb (01-05-2011)
Sponsors Lightbulb
   
Old 12-25-2010, 06:30 PM   #2
Senior Member
(male)
 
Join Date: Sep 2010
Location: Normal, IL, USA
Posts: 164
jverive HB Userjverive HB Userjverive HB Userjverive HB Userjverive HB Userjverive HB Userjverive HB User
Re: Please, I just want answers...

You have numerous issues, some of which may be unrelated, but most of which certainly fit the profile of an auto-immune disorder (the positive ANA test is the biggest finding.) MS, Lupus, Lyme Disease, and many others ought to be ruled out, and your PCP or neurologist should be coordinating this. If you aren't getting a satisfactory explanation for why you're not getting more specific testing, you may need to see a new PCP who will help advocate for your help.

You might get more help through agencies like the MS Society of America (I'm assuming you live in the US.) The MS Society has branches in most major cities, so you ought to be able to find one near you if you live near a major city. I hope you find some answers.

 
Reply With Quote
Old 12-25-2010, 06:33 PM   #3
Senior Member
(male)
 
Join Date: Sep 2010
Location: Normal, IL, USA
Posts: 164
jverive HB Userjverive HB Userjverive HB Userjverive HB Userjverive HB Userjverive HB Userjverive HB User
Re: Please, I just want answers...

You have numerous issues, some of which may be unrelated, but most of which certainly fit the profile of an auto-immune disorder (the positive ANA test is the biggest finding.) MS, Lupus, Lyme Disease, and many others ought to be ruled out, and your PCP or neurologist should be coordinating this. If you aren't getting a satisfactory explanation for why you're not getting more specific testing, you may need to see a new PCP who will help advocate for your help.

You might get more help through agencies like the MS Society of America (I'm assuming you live in the US.) The MS Society has branches in most major cities, so you ought to be able to find one near you if you live near a major city. I hope you find some answers.

 
Reply With Quote
Old 12-25-2010, 09:23 PM   #4
Junior Member
(female)
 
Join Date: Dec 2010
Location: PA
Posts: 15
barelracer HB User
Re: Please, I just want answers...

thank you so much for your advice, I have to do something, the only neuro I saw was a seizure specialist...and she said she couldnt help me, the rhum doc said it was depression or fibro at first...despite the tests (havent seen him since the mri), so its just my pcp helping me, and my insurance limits what he is allowed to do! Your suggestion is a good one, my pcp thinks its MS or lupus...an MS specialist should be able help me distinguish which, so I can be treated! as the symptoms pile up...I worry they will become permanent!
Thank You again! And have a happy holiday!

 
Reply With Quote
The following user gives a hug of support to barelracer:
pathtoanswers (01-02-2011)
Old 01-02-2011, 09:02 AM   #5
Junior Member
(female)
 
pathtoanswers's Avatar
 
Join Date: Jan 2011
Location: US
Posts: 15
pathtoanswers HB User
Re: Please, I just want answers...

Quote:
Originally Posted by barelracer View Post
Hello, I am a 38 yr old widowed mother of one son, who was once, prior to 8 months ago, a very active healthy individual. I have had weird moments on and off for a few years, insomnia, headaches,severe fatique, had cts for possible appendix problems, gall bladder tests several times,and what was diagnosed as gout in my right foot, but never slowed down, and resisted seeing my doctor unless I was in excruciating pain. In april, I was very uncomfortable in my lower abdomin(sp), and discovered I had POP (pelvic organ prolapse, of the bladder and uterus).. thats how it all started anyway...having no insurance, nothing could be done, and 2 weeks later, the joint pain started, hands, wrists, and hips at first. Found a way to cover some medical tests, and had rounds and rounds of bloodwork and xrays! results: high MCH, high CRP, high ALT/AST, positive ANA with nucleolar pattern, occasional low RBC. CT showed granuloma's in left lung, mild scoliosis, and degenerative arthritis in my back(mild). GI dr found "nothing remarkable", gyno gave me a hysterectomy, and rhumatologists#1 said I had depression, #2 said fibromyalgia (the joint pain was worse, and spread to mucsles) a month after onset I started having multiple fevers everyday, 99 to 102, mostly at night, no one knows why these happen, though they are worse after activity. I quit woring in June, it got that bad with pain, and Rumatologist #2 sent me to Phys Ther., where they found what they suspected was nerve damage, and lack of reflexes, both arms. In Sept., I suffered the WORST headache EVER, with vomiting, no control of my limbs, couldnt talk, couldnt see...but did not go to E.R.,as the doctors already made me feel like I was a hypochondriac...but found that now my memory is SHOT, I sometimes have trouble comprehending what is being said to me, and struggle sometimes to "find the words", as well as mood swings which are alarming to say the least!Also since then, if I walk to much, or have a fever, my right leg will hurt at the hip, and stop working sorta..I have muscle weakness in all 4 limbs, mostly arms,and I cant feel the current of the electric fence (no shocks), while my friends get knocked on they're tucus's by it! I still have headaches, all the time, and when I followed up with my PCP, (he's suspected an autoimmune disorder the whole time) he ordered an MRI and EEG, which ultimatly showed a "possible lacunar infarct" and possible "demylinating"(sp) disease(EEG was normal)...he quickly referred me to a neurologists, who I saw today. She says she actually read the EEG, and proceeded to tell my boyfriend ALL about it(she didnt talk to me directly at all!) until I interupted her and asked about the lacunar stroke thing, which she replied she "could not help me with", couldnt tell me why, or if I may have another, etc., nothing!! AND stated that there were NO OTHER tests to help me!(though she did say she thought my stroke was "silent" and no relation to my memory, pain, or nerve problems.) she then suggested I go back to my doctor for treatment. Isnt a nuerologists supposed to help with these exact problems? I have no idea what is wrong, my PCP suggested MS or Lupus, but no one else seems to wanna bother testing for these???
To Barelracer; Hi; I am new here and looking for people to talk too.. I know how frustrating it is. I too have very similar problems working on the hysterectomy thing(prolapsed uterus,dense abd adhesions,evreything adhered right side)had to remove some when tubes tied 2yrs ago. Anyways, I'm waiting to hear the ureodynamics test,Apt this week coming with ureo than gyno to figure next step..Anyways my symptoms have gotten worse over the last 1 1/2 which besides the abdominal (much longer like 10yrs since gallbalder surgery) started neck pain flu like symptoms-Mri neck normal,thyroid normal, muscle aches tested for lupus,lyme,RA,ANA neg. Sed rate high,CRP high, things ive noticed before was tingling,and pins&needles things falling asleep, The "nerve" pain has gotten alot worse and muscle weakness. Tingling,numbness,pins*needles,cramping, twitching toes,creepy crawlies feelings,burning in hands,feet(worse),pelvic bone, weird sensations from pelvic bone down legs, then sep neck into brain, pain in arms followed by more extensive weakness, speech is slurred at times,balance off, cognitive function off, banging into things,dropping things, weak enough cant hold dinner plate have to prop,hairdryer,anything over head,going through clothes on racks, holding mail can be tough if long enough. Had Brain MRI w/o contrast was normal ,waiting on EMG of legs(the techs reactions were of surprise that i didnt feel alot of it) , Last MRI of cervical spine was normal 1 1/2 yrs ago. My veins are extremly visible in my extremities(not sure if normal) I've been bounced around so much i just need the docs to understand the debillitating symptoms they are not in my head.. The Neuro i am currently seeing looked at the MRI results of the brain,mind you does not know results of EMG yet and transfered me to a Neuromuscular doc. The only thing he said was that my VIT d (14)put on 50,000UI *8wks & B12 (350) put on that. and was ready to dismiss at that and i spoke up and said "I'm not ready to drop this,it is not normal to have to prop your plate up" he said he is spec in headaches & strokes and transferred me and said "You do not have MS" I have Muscular Dystrophy with 4 relatives on my fathers side although early onset & males. This is scary stuff , so YES I understand you completley. Please talk to me anytime,I need someone to talk too..Thanks !!!

 
Reply With Quote
Old 01-04-2011, 06:51 PM   #6
Junior Member
(female)
 
Join Date: Dec 2010
Location: PA
Posts: 15
barelracer HB User
Re: Please, I just want answers...

wow...all your symptoms are harsh! I can see why your frustrated...to have those test results you do and not have answers for them...it sucks!!! I am discovering thru research that there are sooo many types of neurologists and rhumatologists....most cant help our symptoms! so finding the right one...*sigh*. Have you seen a rhum dr yet???I dont remember from your post...not that they are miracle workers..lol..you saw what my first two said...havent seen one since the positive mri...wonder what they'd say now???idiots...it IS wonderful to talk to others who have problems and no dx yet...lets us know we are not alone...
Its especially hard because after so long...my friends and family arent taking me serious anymore...even with the stroke....like I am faking or something, because i "look so normal"....*sigh*. I am sure you know what I mean!!!
Hard to get thru everyday...just so tired and sore....
Hope you get some help soon, researching on the internet has helped me alot...especially with the blood results and stuff! Keep me up to date on how you are doing! And thank you!

 
Reply With Quote
The following user gives a hug of support to barelracer:
pathtoanswers (01-05-2011)
Old 01-05-2011, 07:53 AM   #7
Junior Member
(female)
 
pathtoanswers's Avatar
 
Join Date: Jan 2011
Location: US
Posts: 15
pathtoanswers HB User
Re: Please, I just want answers...

Quote:
Originally Posted by barelracer View Post
wow...all your symptoms are harsh! I can see why your frustrated...to have those test results you do and not have answers for them...it sucks!!! I am discovering thru research that there are sooo many types of neurologists and rhumatologists....most cant help our symptoms! so finding the right one...*sigh*. Have you seen a rhum dr yet???I dont remember from your post...not that they are miracle workers..lol..you saw what my first two said...havent seen one since the positive mri...wonder what they'd say now???idiots...it IS wonderful to talk to others who have problems and no dx yet...lets us know we are not alone...
Its especially hard because after so long...my friends and family arent taking me serious anymore...even with the stroke....like I am faking or something, because i "look so normal"....*sigh*. I am sure you know what I mean!!!
Hard to get thru everyday...just so tired and sore....
Hope you get some help soon, researching on the internet has helped me alot...especially with the blood results and stuff! Keep me up to date on how you are doing! And thank you!
Thanks; Yes it makes you feel not so alone, family often don't have a clue. I'm here if you need to talk and i will try to keep updates. I see the Neuro this Frid to go over the results of EMG (prob said that already) and see if he is worth seeing. YEs i went to a Rheumo first when this all started it all started with my neck and feeling as though i had an infection, then went way down hill from there he tested for the Lupus,Lyme,RA, Etc. all neg. The only positive was Sed rate & CRP. He diag Fibro (but i think more going on) he referred me to a Neuro when i told him about all the other symptoms appearing. I'm really afraid i'm going to loose function in my legs and arms if they dont hurry.. Sorry so long!!

Hugs to you!!

Jen

PS are there docs on this forum??

 
Reply With Quote
Old 01-05-2011, 08:41 AM   #8
sjb sjb is offline
Facilitator
(female)
 
Join Date: Jun 2010
Location: Gardner Ma USA
Posts: 3,386
sjb HB Usersjb HB Usersjb HB Usersjb HB Usersjb HB Usersjb HB Usersjb HB Usersjb HB Usersjb HB Usersjb HB Usersjb HB User
Re: Please, I just want answers...

Hi barelracer is there alcohol use in any form?

Is there chemical use in any form including medicine?

Last edited by sjb; 01-05-2011 at 09:24 AM.

 
Reply With Quote
Old 01-05-2011, 09:19 AM   #9
Junior Member
(female)
 
pathtoanswers's Avatar
 
Join Date: Jan 2011
Location: US
Posts: 15
pathtoanswers HB User
Re: Please, I just want answers...

Quote:
Originally Posted by sjb View Post
Hi Is there alcohol use in any form?

Is there chemical use in any form including medicine?


No alcohol use I don't smoke or anything else not prescribed

Meds are Neurontin,Xanx,Topril,Detrol,Vitamin D,B-12 thats it tryed Cymbalta stopped that..I had all my symptoms before even starting the Neurontin,Xanax,Cymabalta,Vit d & B-12.

I would walk and talk as if drunk sometimes and not have a lick of anything alcholic or otherwise.

If this question was directed to me or the original post

 
Reply With Quote
The following user gives a hug of support to pathtoanswers:
sjb (01-05-2011)
Old 01-06-2011, 07:18 PM   #10
Junior Member
(female)
 
Join Date: Dec 2010
Location: PA
Posts: 15
barelracer HB User
Re: Please, I just want answers...

no alcohol or drug use...no meds at all til the problems started, was rx'd darvocet, percocet, vivodin, hardly would take them tho, so they gave me tramadol and ibuprofen instead(brain fog is bad enuff without heavy pain killers!) tried savella, made me vomit, flexiril, no help, prednisone at 60mg was a blessing! but only on it for a month...and then everything came back, and they wont try them again til I am diagnosed...*sigh* so now just using ibuprofen and tramadol(when its bad) and 325mg aspirin for help with preventing another stroke...

I know what you mean being afraid of losing use of your limbs...my rt hand goes numb, and left leg now...usually lasts an hour or so, goes away if I rest...scary to even think of it ever becoming perminent...please do keep me up to date, and good luck friday!!!!!!! I am on hold til next thurs when I see my reg pcp....we'll see what he makes of the new numbness...
stay well!!!

 
Reply With Quote
Old 01-07-2011, 10:15 AM   #11
Senior Member
(male)
 
Join Date: Sep 2010
Location: Normal, IL, USA
Posts: 164
jverive HB Userjverive HB Userjverive HB Userjverive HB Userjverive HB Userjverive HB Userjverive HB User
Talking Re: Please, I just want answers...

It might behoove you to make an appointment with an epidemiologist to make sure things like Lyme Disease and other uncommon conditions are required. It sure sounds like you've got something neurological going on, and although you've been tested for MS, and Rheumeoarthritis, it's a good idea to repeat the testing on a yearly basis. Lupus should also be considered if it hasn't already been part of your differential diagnosis.

Given that your SED rate is high and predisone helped you, it's almost certain that you have some sort of inflammatory disease, and quite likely a neurological autoimmune disease. I don't know enough about the CRP (C-Reactive Proteins,) but I will read up on that.

Try to keep yourself occupied with as many pleasurable activities as you feel up to entertaining, and if you feel you are not being an effective advocate for
your health, bring a supportive friend or family member with you to you doctor's appointments to help advocate for you. While it's disheartening when family members don't seem to understand you or offer support, it's abominable that you should get the same response (or lack of response) from medical professionals!

On a lighter note, I do believe this is the first time I've ever used the words "behoove" and "abominable" in the same written response!


Quote:
Originally Posted by barelracer View Post
no alcohol or drug use...no meds at all til the problems started, was rx'd darvocet, percocet, vivodin, hardly would take them tho, so they gave me tramadol and ibuprofen instead(brain fog is bad enuff without heavy pain killers!) tried savella, made me vomit, flexiril, no help, prednisone at 60mg was a blessing! but only on it for a month...and then everything came back, and they wont try them again til I am diagnosed...*sigh* so now just using ibuprofen and tramadol(when its bad) and 325mg aspirin for help with preventing another stroke...

I know what you mean being afraid of losing use of your limbs...my rt hand goes numb, and left leg now...usually lasts an hour or so, goes away if I rest...scary to even think of it ever becoming perminent...please do keep me up to date, and good luck friday!!!!!!! I am on hold til next thurs when I see my reg pcp....we'll see what he makes of the new numbness...
stay well!!!

 
Reply With Quote
The Following User Says Thank You to jverive For This Useful Post:
barelracer (01-07-2011)
Old 01-07-2011, 10:48 PM   #12
Junior Member
(female)
 
Join Date: Dec 2010
Location: PA
Posts: 15
barelracer HB User
Re: Please, I just want answers...

thank you for your response (and I will "behoove" the dr's to help me more..lol..did I use that right?) I have not been referred to an epidemiologist....I will have research them and see what they can do for me! I would love to find a good neuro to help with my fears on the stroke and brain lesion issues...thats what scares me most right now...
I plan on being very "firm" with my pcp next thursday, I cannot take this much longer...especially after days like today, with fevrs joint pain and extreme fatigue...ughh....thank you again! I will be asking about epidemiologists...(sp)

 
Reply With Quote
Old 01-08-2011, 01:02 PM   #13
Member
(female)
 
Join Date: May 2009
Posts: 60
mentalcompass HB User
Re: Please, I just want answers...

I wanted to say hello and let you know you're not alone. I'm 41 and I have a 5-year-old and a number of recent new issues too, it's very scary indeed. I go to the neuro Wednesday for the results of my MRI and EMG tests, which they kind'a said seems normal already. Normal bloodwork but there's a big problem, still, what is a mystery so I totally understand your fear. Fear of the unknown is the greatest fear of all. My mother has MS and if that's what they find, you should know that you can live a wonderful and full life with that disease. She's almost 70 and she's like a damn lumberjack. She hurts, yes, but she powers through it all. She found out about the MS at 45, which is why they are suspecting it in my case. Going from healthy to this odyessy of medical test is a damn hard road to take, I'm on that road now too and we both have young kids. I'll say a prayer for you that you find the answer and get the right treatment.

 
Reply With Quote
Old 01-08-2011, 03:08 PM   #14
Junior Member
(female)
 
Join Date: Dec 2010
Location: PA
Posts: 15
barelracer HB User
Re: Please, I just want answers...

thank you sooooo much! It does help to know your not alone with these kind of issues! I hope you get some answers also, it must be doubly frustrating to have had the tests with no results...
Thank you for telling me about your mother, having ms as a possibility is scary, but even if thats whats wrong, at least its an answer, and then they can treat for it!
Good luck with your appt with the neuro, hopefully they can help you and not brush you off (as so many seem to do)
I will keep pushing thru as best I can, and my next appt(next thurs) with my pcp, I am going to be very firm about steps being taken to solve this!
Thank You again!!!!!

 
Reply With Quote
Old 01-08-2011, 03:38 PM   #15
Newbie
(male)
 
Join Date: Jan 2011
Location: Longmont, CO, USA
Posts: 8
Roy Faverty HB User
Re: Please, I just want answers...

see another neurologist, you seem to have some auto-imune disorders, neuro problems are really difficult, I have idiopathic peripheral neuropathy and was only successfully diagnosed by a physiatrist MD while doing tests prior to a spinal surgery. Since then I have seen four neurologist and gotten little or no help. My internest and I have had to work out the treatment with a little help from a book on the subject.

Last edited by Roy Faverty; 01-08-2011 at 03:39 PM.

 
Reply With Quote
Reply Reply

Similar Threads
Thread Thread Starter Board Replies Last Post
very scared, losing vision and use of hands - Please help! pd5 Neurology 2 01-12-2011 02:34 PM
In search of answers..please help pollie67 Neurology 2 11-18-2010 08:52 PM
What the Neurologist said. Please read cbds513 Neurology 7 08-08-2009 02:57 PM
Hep please: PM doc now wants me to see a neurologist! gdspoiler Neurology 12 07-31-2006 04:48 AM
Met with a Neurologist today... advice? curious11 Neurology 8 06-04-2005 09:25 AM




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



jennybyc (7), jverive (4), ladybud (4), carriep80 (2), LucyBee210 (2), Titchou (2), smiteler (1), anwise67 (1), minstrel2 (1), MrIT (1)

Site Wide Totals

teteri66 (1180), MSJayhawk (1004), Apollo123 (904), Titchou (847), janewhite1 (823), Gabriel (759), ladybud (754), sammy64 (668), midwest1 (668), BlueSkies14 (610)



All times are GMT -7. The time now is 11:17 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!