OK, Just thinking out loud here (and venting).
 

I'm still having daily numbness from my lower ribs and down, I might stay numb all day/night or I might have days when I wake up OK and I slowly go numb derring the day. It's never so numb that I don't feel anything, I can poke my self with an end of a paper clip (or even a needle) and I don't feel pain, I can feel something touching me and if I hit my leg hard (like running into something) it might hurt but not nearly as much as it would if it wasn't numb.

Now the spinal MRI didn't show anything (I understand that lesions on the spine don't show up easily, true?). I wouldn't think I have a nerve problem in back because I don't have any nerve pain, I don't even have any tingling, just numbness that comes and goes. I don't have any pain in my back at the point numbness starts, or any where in my back.

I also don't see HOW anxiety would cause numbness to come and go in same place like this (and with it being 1/2 my body). :rolleyes: Is there anything I can do to help show this isn't anxiety?

How long does this have to go on before a Dr thinks this ISN'T ok?

I'm trying my best to still get in the see my new PCP and than the new neuro but my kids want stop getting sick. :rolleyes:

I see the eye Dr. tomorrow, if she says this is ON than I call the neuro than, if it's not ON, well I don't know of anything thing else that cause loss of color & vision so I'll just have to see what she says.

Maybe this will help from ofcn.org?

http://ofcn.org/cyber.serv/hwp/support/ms/MSFAQ.html

Thank you, I have read this before.
DH said if it's about MS and on the internet I've probably have already read it. :rolleyes:

Hi Mom/J! It can take quite a long time to get a proper dx of anything. I hate to say it but it's true. *sigh* Don't totally discount anxiety because stress can do crazy things to our bodies. You're undoubtedly having anxiety issues (me too) imho. You seem upset a lot and who could blame you. Chasing the dx is very draining. Try to rest and not stress so much. Patience is about the only thing that will get you through this. I hope you get the answers you need soon, but sometimes you just have to wait it out. I'm so sorry about all of this carp. I'm thinking about ya!

I agree Joelle, stress and anxiety is part of this process. I'm still going to do the therapy, and get that behind me so it won't be an issue.

Thank you, I think I'm more frustrated more than anything. My Dr that I had back in FL said that if I was having more numbness than what I was having than she would be thinking more like it's MS. So now here I sit in TX with LOTS of numbness and a Dr that doesn't care as long as I can walk because my MRI "looked good", he didn't even look at the film himself (sorry, there I go again).

I'm just frustrated. I know I need to see a new Dr but I just can't right now. :(
I had been very good the past 2 years and hadn't worried about getting a DX, up until my body went hay wire in Dec., so I though I must have lesions that will show up on a MRI now. Wrong, but than something does come up on my LP and my Dr will not tell me what is means. :rolleyes:

Trust me I'm not worrying or stressing over this. All this posting is just me venting because I don't have any one else to talk to.
Believe it or not I'm a very clam person when it comes to stressing out over things, DH even gets mad that I'm never worried like he is about anything. I'm the one always telling others to not worry and that everything will work out just fine.

I just need to find a Dr that will listen to me and answer my ?'s and not treat me like I'm child with anxiety issues.

Julie, numbness is a sensory symptom. It can come and go or stay. there's not alot that can be done for numbness except steroids which may or may not help.

As for getting a diagnosis - unfortunately, symptoms alone won't get you a diagnosis. You need some positive test results and abnormilties on a neuro exam. I don't know if you have had either of those but if not you might be in limbo for awhile.....sorry :(

Thank you, I'm not even sure what all the test are I should have. I've done MRI's, LP, EMG and a little blood work.

Numbness is a symptom of fb, which you have:

http://www.nfra.net/Symchart.htm

Why do you not believe your current dx?

Even if you are right, you will HAVE to wait for the tests to prove that. Getting frustrated (i.e. stressed) is the worst thing for MS. :eek:

Cherie

Maybe you'll just have to wait until a new sx shows...that or the Optho/Neuro will find you've had ON, but the VEP's should have shown that. Other tests you've not had would be the Neuro/Psychological Exam that lasts all day, tests everything, and costs a bundle. Then, I think you are done....no more to do.

There's hope for answers, but you may have to wait. You can't demand an answer ;) If the test don't show it, they don't show it. I understand :hug:...maybe it wouldn't hurt for you to chat with a therapist like I am doing. We just never know until we tried everything, and if it's not anxiety, then it's not...and you'll have proven it!

Criteria seems to point to the fact that you'll need another seperate exaserbation (time). The current one you seem to have will have to work its way to remission and then, who knows, you may go years before anything else happens. When and if it does, you will then have more ammo for the doctors. My flair lasted about 6-7 weeks, with residual going on for a few weeks after that. So it should end soon, or I hope it does.

Meanwhile, I found when I was numb, if I didn't pay attention to it, I forgot about it for the most part. I was numb the whole left side, so I get it. Are you just numb or do you have strong pins and needles too? (Like asleep?) Not that it matters, just curious :) I also found that cold wind on my skin felt good...so if its cold, maybe a walk outside or a drive with the window open blowing on you? Just things that worked for me :)

Take care of yourself...it's going to be okay

I've never looked at Fibro sx before....momx7....seems all your sx are listed in that link....why don't you consider that as you've been dx'ed already? Have you talked to folks on a Fibro board to see what they experience? Might be of benifit.

One last thing; You said: I also don't see HOW anxiety would cause numbness to come and go in same place like this (and with it being 1/2 my body

I don't think you followed my links last week when I found this...so I'll do a cut/paste so you can read some...and follow the link: (Mayoclinic)

http://www.mayoclinic.com/health/con...877/DSECTION=2


Signs and symptoms of conversion disorder typically affect the function of motor or sensory skills — such as the ability to walk, swallow, see and hear — and simulate a general medical or nervous system condition.

Afflictions usually develop suddenly, following a stressful event. The signs and symptoms are related to psychological rather than physical factors, and are not produced voluntarily.

Conversion disorder symptoms include:

Loss of balance
Numbness
Paralysis in an arm or leg
Loss of the touch sensation
Inability to feel pain
Inability to swallow
Inability to speak
Hearing impairment, or deafness
Vision impairment, including double vision and blindness
Hallucinations
Seizures or falling down inexplicably
Convulsions
Abnormal gait, or other difficulty with walking
Trembling
Vomiting
Diarrhea
Inability to urinate
Conversion disorder is one of several types of somatoform disorders, in which signs and symptoms create the appearance of a medical illness that has other no medical explanation. Conversion disorder differs from other somatoform disorders — such as hypochondria and somatization disorder — in that it affects primarily sensory and motor functions that are normally under voluntary control.




Have a good night!

I DO believe I have Fibro, I just think it's more than that because of other SX that don't look like fibro like,
muscle weakness
abnormal reflexes
slurred speech and "loss of word"
memory loss
Jerky Eye Movements
Flashing lights in eyes
shacking/tremors
electrical shock sensations
Odd tingling feeling over body, like when you get chill bumps but I don't get "the bumps"
Increase in severity of symptoms with heat
Swallowing problems - comes and goes
Cold hands and feet
Ears ringing - almost all the time, maybe all the time now
Vertigo
Feeling of floating when laying down
Low body temp
Feeling like I'm dreaming and just can't focus on what's going on
Facial tingling
Feel like I'm not emptying my bladder all the way sometimes
When I look up my eye lid doesn't always move up
Unable to tell hot from cold water with my feet
I get optical migraines/painless migraines


Now I know some of these might not be MS SX but I don't think these are Fibro SX.

I never had VEP's. We are not worried about the cost of the test. My neuro didn't even talk about more test. He's bottom line was the MRI was fine - No MS than, He can't help me other than giving me Cymbalta.

Let me say this gentley...you just descibed most of the conversion disorder symptoms. I'm not saying it's what is going on, but something to consider.

When you think about it, this disorder is fixable, MS isn't. You owe it to yourself and family to consider this. You are feeling these things, and they are real. But there are other reasons that you've yet to investigate. Your Fibro also covers many of the sx you describe.

After you see the Optho/Neuro tomorrow, maybe you'll have a clearer understanding. You want answers, just like me, but when we are in this situation, and we are determined to understand it, we HAVE to consider all the possiblities.

You say you have no stress and just blow stuff off....well, that's how we hold bad things inside and under this belief, we release them physically because we have not dealt with things. We all have bad things happen to us, especially me! Be kind to yourself and consider it. Thats all I'm saying about this, and won't bring it up again. Its your decision. Good luck

:hug::hug:

You've had a clean MRI, clean LP and the Optho/Neuro will determine if you've ever had ON. The VEP is something the doc could order tomorrow. Then the neruo/psyc test is left...you could ask for that tomorrow too....

Have a good night!

All of the following symptoms were found in the fb tables I posted:

muscle weakness – upper extremity weakness, lower extremity weakness
slurred speech and "loss of word" – Dysarthria (imperfect articulation of speech), word finding difficulty
memory loss – Impaired memory
Jerky Eye Movements - Nystagmus (rapid eye movement)
electrical shock sensations - Burning, aching, dysesthetic electric
Odd tingling feeling over body, like when you get chill bumps but I don't get "the bumps" - Burning, aching, dysesthetic electric
Swallowing problems, comes and goes - Dysphagia (difficulty swallowing)
Cold hands and feet - Raynaud’s phenomenon (elevated cold sensitivity in the extremities)
Ears ringing - tinnitus
Vertigo - Vertigo (sensation of spinning)
Feeling of floating when laying down – Disorientation or Vertigo
Low body temp - Neurally mediated hypotension (low blood pressure)
Feeling like I'm dreaming and just can't focus on what's going on - Impaired concentration
Facial tingling - Paresthesiae (abnormal sensation-burning, prickling)
Feel like I'm not emptying my bladder all the way sometimes - Hesitancy
Unable to tell hot from cold water with my feet - Raynaud’s phenomenon (elevated cold sensitivity in the extremities)
I get optical migraines/painless migraines – migraine

The rest might be buried in the tables, but perhaps I just didn’t pick up on the description? Have you had the rest objectively tested; for example, did the neuro find abnormal reflexes? Are you sure the symptoms are not getting worse from increased fatigue (which seem to go part and parcel with these kind of diseases), instead of increased heat? Is the trembling due to weakness or a warning of diabetes problems? Could some of this be attributed to thyroid problems? Etc...

Abnormal reflexes
Flashing lights in eyes
When I look up my eye lid doesn't always move up
Increase in severity of symptoms with heat
shaking/tremors

Cherie

Dump the dope!
 

Hello Julie,

Dump that dope of a neuro and find one who will pay attention to you! it does not appear that your neuro is a specialist in MS.

Run don't walk to your next doctor!

Dave

For some people it takes a long time to be diagnosed not only with MS but other conditions as well.

I really don't know how to put this but, you do have fibro, a chronic condition. Anyone with any chronic condition can benefit from therapy. Additionally, many of the symptoms you have described are similar to anxiety and depression. I would encourage you and support you 100% in seeking therapy while you wait for a diagnosis.

Because of the fibro that you are dealing with, your kids and husband would benefit from therapy as well. Chronic illness do put a stress on the family unit. Your kids see how you react to it and that is how they will learn to react to things. Working through some things together will only be beneficial to your family unit.

Also, sensitivity to heat is common in other conditions as well. Along with MS tremors, I have essential tremors (hereditary condition). Heat aggravates that as well. Heat can aggravate hormones and create issues in many women especially peri menopausal and menopausal women.

What had your neuro said about your physical examination? You've had tests done but what about the physical exam? Did the abnormal reflexes show up on the physical exam? Do you have evidence of a neurological condition on physical exam? etc. These are the questions I would now be asking the neuro and/or your PCP.

Hang in there. Everything will work out as it is supposed to. In the meantime, as you wait, seek some sort of counseling to help you through all of this.

As the others have said a lot of what you describe fits the description of siymptoms of anxiety and depression PLUS a whole lot of other medical condtions. The other thing is that many of them are subjective, there is no hard and fast way to test for them or to quatify them, Dr's are often loathe to amke a dx based soley on such subjective kind of complaints, thats why they are looking for the more objective signs such as LP, evidence of ON etc. Also if you do have MS, remeber that over 85% of us have RRMS, so symptoms/signs can be harf to find unless you are in an active relapse- its a bit like having an intermittent fault in an appliance ( sorry for the analogy) but the appliance acts faulty until the repair turns up then its fine- it can be very frustrating - but eventually the problem will declair itself. When i first started having symtoms they were thinking of an autoimmune problem. possibly lupus but could not give me a dx so i too was in limbo- i was told that very same line- Whatever it is, it will eventually become more evident- its toughm but you need to be patient. The dr's will not be helping you one bit if they rush in giving you a dx that is not correct. as the other have also said, any chronic disease tends to have an emotional content such as anxiety depression, so it would pay to address that rather than try to shrug it off - you would not be human if this was not having some effects on your anxiety levles

I am sorry for what you are going through. I do agree that having a neuropsych evaluation would be helpful. That testing will show if any of your sx are related to an underlying psychological disorder. Also, it can show if you do have true cog problems that are similar to those found in MS.

You sound a lot like I did four years ago. I know it is scary to feel horrible, and to not know why. I went to doctor after doctor looking for answers. For me, it took more than a half dozen doctors before I found one who would help me.

You may have heard my story before, but I'll share it again just in case. I have four lesions in my brain, abnormal neuropsych eval (profound losses in short term memory, information processing, etc), abnormal urodynamics testing showing neurogenic bladder, ENG showing Central Nervous system dysfunction, a history of several attacks, and an abnormal neuro exam.

I have all of this and still don't have a dx. Three years ago, I would have been(was) a basket case. But, now I'm not. What has made the difference, and this is what I think all limboers need, is having a doctor who cares. My current neuro is willing to treat my sx, runs tests when appropriate, and sees me every 3 to 6 months.

For me, once I knew I had a doctor who believed in me, and wasn't put off by the hard to dx sx I could let some of that "gotta know now" go. I realized that I could not make them dx me. I could only try and get the best medical care possible. You have to advocate for yourself.

My current neuro says I either have MS (in fact if my last MRI would have shown one more lesion she would have made the dx), a post viral illness(encephalomyelitis), or problems stemming from my copper deficiency (she's the first doctor to check for that).

Hang in there. Don't give up advocating for yourself. Sometimes it takes a team of doctors to get to the bottom of things too (I have a urologist, Rheumatologist, Neurologist, and an ENT).

Oh, also, it might not be a bad idea to have a Physical and occupational therapy evaluation. Sometimes they pick up on things that the neuros don't in their (sometimes quick) office exams.

Good luck!

I don't know if the neuro found abnormal reflexes. The SX do get worst with heat (as well as fatigue). I don't have diabetes, I was hypoglycemic until a few years back when I went IR because of PCOS, I check my glucose level a lot. My thyroid has been checked a lot, no problems.

I was just wondering if you have seen a Rheumatologists? A Rheumy might be able to tell you if your symptoms were Fibro or if there was more to this.

Feel better hon,
DAY

I think I have to cancel the eye Dr today :( I have two sick kids home today and my 3 year old. DH was going to watch the 3 year old at work so I could go but than when the 2 others came up sick he said he couldn't have them there and he couldn't come home that long. :( he's the owner, if he wants to come home he can :mad: He doesn't want to!

I just can't believe this, almost every Dr.'s appt. I make for my self I end up with a sick kid.
Before anyone ask, No, there is no one that can watch the kids. No family here, everyone around us works, our nanny/house keeper watches her newborn grand child in the day and can't watch a sick kid. I have a drop in daycare I use for the 3 year old when I need to but still have the sick ones to deal with. http://i90.photobucket.com/albums/k2...y/dontknow.gif

OK, vent over, I just wanted to let you guys now I'm not going to be seeing the eye Dr today after all.

That was one of the Dr.'s I was thinking of also after I saw the eye Dr and the PCP. Thank you, I think I will do that before the new neuro.

Hi Julie!

I just wanted to let you know that I don't think that any of us are dismissing you.:) :hug:

We just want you to look at the big picture and try to use all of the avenues available to you so that you can find out what is wrong. :hug:

There are so many things that "look" like MS.

He!!, sometimes I still think I don't have MS even with a diagnosis from an MS specialist and the lousy mri's to prove it :D.

For one thing, you don't want to be put on a DMD without a pretty positive dx. I can tell you that my experience in the last 9 months since my diagnosis has been awful. That is putting it very lightly LOL.

Not everyone has problems with the DMD's but I've had nothing but more problems since I was on Copaxone and Avonex. Sometimes you feel like you've been poisoning yourself on purpose:rolleyes:.

Just think about all of your options. I think most of us, especially, newly-diagnosed MS'ers and limbo'ers benefit from therapy. Even our close family members benefit from it.

Hope your day is better today!:)

Thank you, I know everyone here is just trying to help and not just dismissing me. I have done the therapy route before a few times, I'm not saying I will never do it again just don't think I will be doing any time soon.
Thank you :hug:

Well I reschedule for next Wednesday. Prayers I don't have anyone home sick that day. :rolleyes:

I think you may have missed my point though, Julie. Almost ALL of the symptoms you have are on fb list that I attached, and the rest could be explained by other (perhaps yet unknown) conditions.

When I visit the doctor, he NEVER assumes a symptom is because of MS. He sends me for blood, glucose, ultrasound, EKG, COPD, Xrays, etc . . . and if nothing else becomes obvious up, he MAY blame it on the MS (if it makes sense to). Since you already have a dx that FITS almost to a T, the only symptoms that need to be checked at this point are those that DON'T fit. As was evident from my comparison of the fb chart to your listed symptoms, there really weren't too many there that don't fit that particular dx though . . .

Of course, a lot of your symptoms also fit MS too. :(

If you had not already had a MRI . . . or if the MRI had even one suspicious (but not confirmed as MS-type) lesion . . . or if your LP had showed O-bands, then I would say, get another opinion, pronto! However, your tests came up clean for MS-specific criteria (at least for now), so what can you or your doctors possibly do except wait?

This may very well turn out to be MS in the long run, but for now it is fb (and maybe some other stuff too).

We are just a bunch of low energy and very sick people, that are trying to find ways to keep our sanity with a very gross disease to contend with. Please don't think I am trying to tell you to go away or anything (we definitely can identify with many of your medical issues) . . . BUT I think you also need the support of a fb forum at this point. I have no doubt they will relate to your frustration over the feeling that something else is wrong, and this is where you seem to need the most support right now. :hug:

Cherie