Symptom Check Please

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Regular Member

Date Joined Nov 2008
Total Posts : 159
   Posted 12/12/2008 4:54 PM (GMT -7)   
My diagnoses is Fibro or CFS. But the diagnoses was from a PA-C, because I was living in a area with very few Doctors and no specialist that took State Medical Coverage and was unfit to drive the 3 hours to get to a specialist. I have widespread muscle problems, but do not actualy have any significant pain when the trigger point locations for Fibro are pushed on. A number of those locations do get tight, but the massage therapist can work those points out in a few sessions, and I can tolerate extreme deep tissue pressure. This and a bunch of other symptoms lead me to believe this is not really Fibro. It has been going on for 13 years, slowly getting worse and has had numerous times the symptoms have cleared up completely and then latter come back, with them worsening over these years. I realize you folks can't diagnose me, but could the Veterans do me a favor and look at the symptom list and give me some idea of what is fitting MS please. I am living in California, which has no state insurance coverage unless your on disability or filed for disability. So specialist and expensive test are out. I am just getting by on the drugs I am having to take to keep a 3 day a week job with little demands on me.

Drugs I currently take to more or less control the symptom intensity.

Baclofen 80 milligrams a day.
Klonopin 4 milligrams a day.
Percocet 15 to 20 milligrams a day.
Ibuprofen 2400 milligrams during exteme problems.
Valerian Root some nights because I can't sleep for more then a few hours on even that much Klonopin.

Other treatments: Massage therapist twice a week, mainly concentrating on tight intercostal muscles and sore ribs and sternum. Chiropractor once a week mainly working neck and upper back.

Please note that all of these symptoms were present and much worse when I was taking no drugs at all.

Vertigo bending head backward.
Erector Muscle Spasms prolonged standing.
Chest pain from sternum sitting. Sometimes standing.
Vice like griping that can run anywhere from the stomach around the whole chest and up to the collarbone where it feels like choking when it gets that high.
Laying in bed and feeling like my whole body is tingling or vibrateing or whole body has restless leg syndrome.
Restless leg syndrome itself.
Very Poor Memory.
Can't concentrate allot of the time, like now.
Slow, unsteady walking.
I Keep air conditioner at work at 65 degrees. Anything over 76 degrees, my fatigue, mental symptoms, disorientation feel worse.
Extreme Heat Intolerance. Going outside at 90 or above and I almost instantly get disorientation, disequilibrium, focusing problem.
5 minutes in a steam sauna and I feel like I am going to keel over when I stand up and walk out. Getting in the pool almost imediately stops the symptoms.
Numbness in both feet at toes.
Vague Achey tiredness in arms, legs.
Either go home from work, and disoriented feeling on laying down becomes poor vision and I pass out in a few minutes, wake up a few hours latter and can't go back to sleep without all the drugs and valerian.
Or I go home and feel spacey, like I had a gallon of coffee and try to focus on the TV and can't go to sleep until I take all the drugs and Valerian.
Spacey, hard to focus feeling trying to shop in large stores for groceries or whatever.
Can't close my eyes and stand with my feet together and stay still. I am slowly weaving in every direction.
Can't cross my leg with heel on knee and run it down to my shin smoothly. Jerking stop and go the whole way.
Diaphram gets tight causing a sense of breathing problem.
Stomach feels sick every morning and for at least a couple of hours, sometimes all day.
Sharp pain in mid back on right side that then travels up to right side of chest and becomes burning pain, up the right side of neck burning and then burning in roof of mouth. Usualy takes a few minutes from the time it feels like a pinched nerve in back starting off, to whole right side and roof of mouth like its on fire, and then will go away in about 15 minutes.
Waking up a couple of hours latter with intense burning pain in the roof of my mouth the few times I have been given morphine pills.
Periodic dim, blurry vision, especialy in large department stores.
Almost double vision for about 20 to 30 minutes when I get up before sunrise and have to drive somewhere. Start off seeing two road signs and they slowly come together.
Left eye focuses to darkness in movie theater normaly. Right eye takes 15 to 20 minutes to catch up. Probably the same reason for the early morning double vision.

In general my typical day would be described as feeling sickish, semi miserable, light headed, unfocused, weak, tired, tight chested, sore muscled with back, sides, chest and shoulder soreness that can't decide if its going to feel better or worse by what I do next. And this is actualy a huge improvement in the last year since I started on the narcotic pain killers, baclofen, Klonopin, NSAIDS and Valerian. This time last year most of those symptoms were magnified by about 10. Until I started them, I was up at about 2 am pacing around the parking lot so dizzy I couldn't see straight with a girdle wrapping my whole upper body up my throat and feeling like I was suffocateing.

Sorry about the long post. Any advice would be helpful. I am moving in the Spring back to a area I can at least get medical coverage and then I can get test ran. In the meantime though I am preaty much stuck with just putting whatever pills in my mouth that seem to help.

Veteran Member

Date Joined Mar 2006
Total Posts : 2146
   Posted 12/12/2008 7:02 PM (GMT -7)   
Hey Grailhunter

Welcome to the board. I'm sorry for what u'r going thru, but glad u've found us. Some of u'r symptoms do sound like ms symptoms, but as u'r prob aware, can be many other things as well. U might want to google 'ms mimice' or 'ms differential diagnosis'. U'll get a lot of information regarding other possibilities. I know u said u can't really afford to see a specialist and have tests done, but that's really going to be u'r best bet. To KNOW this is or isn't ms, u'r going to have to have those tests run and either eliminate it or get that dx. Maybe u can go at it slowly. Explain to u'r doc that u can't pay for costly testing. I'm sure they will be more willing to look into doing those tests that reveal the most the fastest up front. It's just an idea, but u really do need to persue this if u'r doubting fibro dx. Take care and let us know how u are and how u proceed.
Co-Moderator, MS Forum
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is*

Forum Moderator

Date Joined Jan 2007
Total Posts : 3550
   Posted 12/12/2008 8:35 PM (GMT -7)   

Hey Grailhunter,

Where in California do you live?  I live there too.  I am in Southern Cal.

Check out this link.  It has a ton of really helpful information on getting diagnosed with MS.  I hope it helps.

Gretchen       co-moderator MS board       diagnosed with MS July 2006
I have no lesions on my soul and so I will live with no limits.

Regular Member

Date Joined Nov 2008
Total Posts : 159
   Posted 12/13/2008 12:58 PM (GMT -7)   
I live in Temecula. I was actualy born in Fallbrook Calfiornia, Avocado Capital of the world, (its great claim to fame).

The area I was refering to as having a poor DX on Fibro do to a shortage of Doctors taking State Insurance is Show Low Arizona. That is about 3 hours east of Phoenix up in the White Mountains at about 6000 feet. There are basicaly no Specialist other then Cardio taking State Insurance, and few Internist. So I had a PA-C, which is what most people there that are low income or can't work have. He was a darn good PA-C, so good in fact that he actualy cared and tried to help people in ways that were beyond his liscenseing levels, like trying to do some pain management because the few Internist and MD's wouldn't touch trying to help these people. So he got into trouble for exceeding the strong medications limit on how long he could prescribe. The review board for PA-C's tried to crucify him at the exact same time I was being reviewed for SSI. So I not only had a PA-C recommending disability on various grounds that wouldn't hold up, and no specialist backing him up on why, but one that was under review. I didn't continue with the disability claim, since I knew even taking it all the way to the Judge wouldn't work with all of the stuff that my PA-C put into the reason for disability, and Social Security blew out of the water with their testing

So, short story made long, that is why I am in Temecula. Its the area I grew up in for one. But for some now obviously insane reason, I actualy thought that California would have a much better system of Health Care for the poor or partialy disabled poor then Arizona had. And as far as access to decent Doctors that do take the State Medi-Cal plan versus the Arizona plan, California might be better. But I am basicaly stuck in a catch 22. I don't have a DX that will hold up. My current MD is on a cash basis and just prescribes me drugs to keep me going and has no test or reasons beyond my own complaints to recommend disability.

So, if I filed for SSI again, I would qualify for Medi-Cal for as long as I could keep appealing, and then go see the Doctors and get test, but they would be starting off from ground zero and I don't know what I would put down for the reason for disability. "I am applying for disability because I can barely make it through a 3 day a week job that has almost no physical or mental demands on me, and I am in chronic widespread pain, gross fatigue, mentaly half there, and living on muscle relaxers and pain killers and Benzo's or its 10 times worse? I don't think it would fly to well unless in the year or more I could keep Social Security going in circles, I could actualy get a accurate DX on why this is happening from a Specialist. I can almost guarentee that MRI's would show something. Its the one thing my PA-C could have done that never got done, but it would have been read by the department person and not a specialist or even a Internist, so who knows if they would have seen something even if there was stuff to see.

Wow, really sorry about the long winded story behind where are you in California. Seems like your head just gets overflowing with junk, especialy when you have been living in lousy health land with no explanation for a long time, and then you start typeing and here it comes.

Regular Member

Date Joined Nov 2008
Total Posts : 159
   Posted 12/13/2008 1:42 PM (GMT -7)   
Ahh, and I forgot a symptom, not that it matters much. But for a very long time I was incontinent for urinateing. Bad leakage problem, although it took forever to go, and not much when I did. Now its turned to gota go, gota go, gota go, and its like 15 to 20 times a day. Don't know if thats the Baclofen doing that or what. Allot of times its every 20 minutes, or I will even walk away, get 3 steps and turn around and go back for more.

Oh, and painful stomach and nausea that's in the mornings and sometimes runs all day. That has to be muscular or nerves. I ran out of magnesium about 3 weeks ago and its been getting worse and worse. At 5 am this morning, woke up with stomach pain and was fealing like, oh man, here we go again. So I took a Baclofen, the second 2 mg Klonopin and some Valerian. I never take Baclofen, or Valerian that late in the morning. Got out of bed 3 hours latter though with little back pain, little chest pain and no stomach pain or nausea. First time in weeks.

Downside of that. I am sitting here at work with no pain anywhere and feeling completely worn out because I took the normal 9 am Baclofen and pain killers. Caffeine won't even phase this and if it did it would just turn to feeling spaced out and in pain. Whatever this is, the choice appears to be either numb and wiped out, or spaced out and hurting everywhere.

Forum Moderator

Date Joined Jan 2007
Total Posts : 3550
   Posted 12/13/2008 2:58 PM (GMT -7)   

Hey Grailhunter,

I am in the Mission Viejo area.  I am about an hour away from you.  Small world......................( oh I have that song stuck in my head)

Good luck on getting some sort of helpful diagnosis. 

Gretchen       co-moderator MS board       diagnosed with MS July 2006
I have no lesions on my soul and so I will live with no limits.

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