I can't think of anything else that would do all of that to u except this lovely disease (unless u have been dx with something else too- such as fibro). I have really bad days like u r explaining- the left leg never gets 'better' tho, from mid thigh down to tip of my toes. My guess would be that u have developed more lesions somewhere (prob on ur spinal cord somewhere). I had a lot of probs with this disease, but it was the big spinal lesion that took my left leg. Anyway. . .
Idk if this will work for u, but eating mushrooms seems to help me. If I start feeling 'the crap' coming on, I'll fry up some mushrooms with onions & it seems to help somewhat! Big hugs to u- I hope ur symptoms ease up soon!!

Hi Tamye

First off ((((Big Hugs))))

I hope I don't sound mean and I pray I don't come off that way but....

I've been following your post and I'm pretty sure you've mentioned that you have bipolar disorder as well as an array of physical conditions. My husband has severe BPD and I am going to speak to you from my perspective of a spouse that has watched the person she loves struggle with this disease for many years.

First: Are you seeing a therapist or psychiatrist on a regular basis for your BPD? Are you on medications to control this and if so are you taking them as prescribed?

I ask this because mental disorders, especially BPD, can seriously mess with your mind and the stress it creates can easily cause physical illness.

From your many post here, it almost sounds like you are desperate to be diagnosed with MS... almost like you want to be diagnosed with this horrible disease.

I know you want answers as to why you are in pain and why you have so many things going on. I totally get this since Im sitting in Limbo-Land with you. But from reading your post youve seen many doctors and have been told it probably isnt MS. Again, coming from the perspective of watching my husband for years. I would strongly suggest you focus on getting your BPD stabilized. I know this is very difficult for some people. It took my husband more than 20 years (and 2 suicide attempts) to find a good group of doctors and it has taken those doctors more than 4 years to get him reasonably stable. Excuse my language but BPD is a bitch of a disease!

The many wonderful folks here at DS are not doctors and we can only share our own experiences and opinions. That is what I am doing now. Please dont take this in the wrong way. Im just speaking from my own personal experience and understand better than most how negatively BPD can affect a persons life and health.

Please feel free to send me a private message if you ever need someone to talk to.

((((hugs))))
Lisa

Lisa,

I appreciate your concern. However, this is not a bipolar disorder support board. This is a Multiple Sclerosis board for those dxed with it and those who fear they may have it. I believe you are one of the ones who also fears that you do have it.

Now to address your comments and/or concerns. If you have been following my posts then you will see that I freely mention that I do have bipolar. I usually have no problem with being upfront about the disorder as I am logical enough to understand that it is indeed a PHYSICAL condition. Something in my brain...synapses probably...are off and I really do not have a problem with that. It is hereditary and my mom, aunt, grandma, other 2 aunts, and 2 nieces have it. I am pretty sure my sister has it and her daughter but with her that is major taboo.

Yes, I also have quite an array of physical problems. I also have quite an array of actual dxes. Which means that THEY at least our not "in my head". I have been DIAGNOSED with Sjogrens, IBS, Reynauds Phenomenom, Dry Eye Syndrome---which actually kinda goes along with the Sjogrens but I was told by the opth. that it is another dx and one that needs to be put down since they are now very concerned that I have not only Graves Eye Disease but also Hashitoxicosis----this is a thyroid condition where you have not only hypothyroid but hyperthyroid as well. It sux. At this time my left eye is protruding out more than my right and it is out of alignment from my right. It looks weird. I wear my sunglasses a lot though, it helps.

I am tested for RA every 4 months because my numbers are continually going up and they say it will probably be another year before I can get the diagnosis of RA and start that treatment. I have fibromyalgia, chronic fatigue immune deficiency syndrome, severely low Vitamin D deficiency, Vitamin B-12 deficiency, Adrenal insufficiency, Mixed Connective Tissue Disease, the beginnings of Scleroderma--(yuck), 1 hemangioma on my cervical spine, 3 on my thorax spine and they have not done my lumbar but there are at least 2 there as well. These are big suckers also, and they hurt me and cause me a lot of problems with movement. I also have a hemangioma on my uterus and 2 on my liver. I have severe hypertension that began after the birth of my second son (same as the bipolar but am sure you know those studies that show that many women do develop bipolar after the birth of a second child--they believe it is hormone related). I had preclampsia with my second son and had to be delivered 3 weeks early. My blood pressure never went down.

I have had an acute hypertension episode where I was simply watching Steel Magnolias for probably about the 6th time with my husband. Noticed I had developed a severe high blood pressure headache and took my bp. It was 175/121. Went to the ER. Stayed over night. Got my bp down through IV drugs. Had all the tests including stress test with the heart ultrasound. Nothing, absolutely nothing wrong with my heart. However they found protein in my urine and a few other indicators of kidney disease. Referred me to a nephrologist where I again guinea pigged for about 6 weeks trying new and different doses of blood pressure meds. I had to stay in bed for 6 weeks only getting out to go to the bathroom. Doctors orders. I had a angiogram done and was told that my veins were perfect. They did a kidney ultrasound and there was a slight difference in size in my right kidney as compared to my left. They did up the formula and I am currently in Kidney Disease Stage 2. They say I will probably stay there another 25 years and stage 3 is not that bad or different from stage 2. In other words it is highly unlikely I will die from kidney disease.

Now I have a diffused fatty liver as well. This is not from being overweight, or from drinking too much, or from doing too many illegal drugs. This is from taking large amounts of Depakote--my mood stabilizer for bipolar--for so long that finally my poor liver is beginning to show signs of wanting to give out. However, they have told me that I will get liver disease of some sort, probably hepatitis or maybe even Cirrohosis but again that will probably not be for another 25 years. Although I have a deep feeling that the liver thing will be the thing that does me in someday. I will not quit taking my Depakote since it is the only mood stabilizer that has helped me in all the long 5 years of drugging me up to try and find the right cocktail.

If you have been following my posts then you must know that I have had a very high viral load of Epstein Barr Virus. I was very, very sick with this. My doctors were amazed because they had never ever seen a viral load of EBV that high before. They both came in to talk with me and tell me that there was no doubt in there mind that I would suffer from autoimmune diseases. My immune system had been so severely injured that it could come back only a bit. The first illness they mentioned was RA, the second was MS. I told them, "what a minute, MS, are you saying Multiple Sclerosis?" and they said yes that there was a definite connection between EBV and MS. That was back in 2006. I did not have any symptoms of MS until a year and a half later. I did not think of this illnesses because I had enough on my mind trying to get well from the EBV and still take care of my 7 and 9 year old sons. Mommy job is always the hardest but the happiest! So my symptoms began.

I did not tie them to MS. No, not at all. I went and got diagnosed with fibromyalgia and Chronic Fatigue Immune Deficiency Syndrome. After all they have many of the same symptoms. I never , not ONCE considered MS. I have a friend who has MS. I always felt sorry for her because there were days when she would show up at the club we went to having to use a cane or a walker. She was only 22. She was and still is so very beautiful. But her young life was so traumatized by MS. Also my sister's father in law was dying from MS complications. He was older but not that old, only like 67. So you see MS never once entered my mind.

Finally I did see a neuro in 2007 about all the weird problems I was having. My doctor actually did refer me because he was concerned as well. This is the doctor that dxed the EBV, not the one I have now. This neuro gave me all these tests and then basically told me that I was some kind of hypochondriac and that since i had bipolar disorder I should see a therapist and get it straightened out.~~~sigh~~~more ugly references to my bipolar, as if that was what defined me as a person. Not my self, just that. Anyway, after that I just said "screw it". I didnt really care if I died from these weird problems I was having. yeah, it would suck for my kids but they were young and resilient and would get over it. It would definitely be better than commitiing suicide which you know from your own husband and his attempts is something that bipolars are pretty famous for, (well that and committing horrible crimes as well).

Finally after several years I could no longer ignore the symptoms as much as I would like to. The problems were interfering with my life. Tremors so bad I was spilling drinks all over me, and could not sign my name without someone helping me hold the pen. Thats always fun when the grocery checker has to help you sign your name while the baggers and the people behind you stand there watching, spell bound like they have never ever seen such a sight before. Oh yeah, lots of fun. Doesnt help that I am only 46. If I was an ancient granny then I guess they would expect it but not from some regular looking middle aged lady. Plus the muscle stuff was really bothering me. Waking me up, keeping me from sleeping, making me limp all the time. I was working at a Valero store and one morning I woke up and my left leg was useless. I could not even feel it. i definitely could not stand on it. My husband bought me a cane from Walgreens and I went to work like that. They sent me home because apparently a person using a cane can not work at Valeros. Prejudicial. Happily I was perfectly fine the next day, just a little limp. Then I noticed my toes dancing. I could not make them stop. They had their own little minds it seemed and would not listen to me. This also was embarassing because when I wore sandals people would make comments on my toes dancing around. Then my leg started jumping up and down when I would sit down. My whole family would come over and try to force it to stop. Including my dad and my husband at the same time. Nothing stopped it. It just kept bouncing up and down.

My cognitive abilities are completely shot. I have a BS degree in criminal justice with an emphasis on law. I have a Texas EC-4th grade certificate to teach. I am halfway through a masters degree program, I also completed 10 months of full time school in order to become a Registered Certified Medical Assistant. Yet, my memory is gone. I can hardly remember anything of this education. I cant remember where I put my keys, my purse, my drink---for pitys sake!!!! I mess up my words and cant think of words that I would like to use. People who know me well automatically cover for me by finding the words for me and quickly throwing them into the conversation. Other people do not seem to notice the weirdness of this and I am thankful for that.

Look, this is a very long post and I do not want to write anything else on here as I think it is wrong to put down really private stuff on the board. Not to be mean to you Lisa, but sorta what you did to me. nyone reading your post will now have the opinion of me that I am nothing more than a bipolar flake who wants her own personal disease for some strange reason.

OTHER PEOPLE!!!! I may have bipolar but it is controlled through the use of medication. Medication I might add that I have decided to willingly take even though I was advised by the medical community that I should stop taking the Depakote I take in such large doses as it is slowly destroying my liver. I may even end up dying from a liver disease. Hey guys!! Thats ok, really!! My kids mean the world to me and if being halfway stable and able to be there for them in many "mommy" capacities means taking the killer Depakote then that is what a mommy has to do. I bet you all of you would do the exact same thing. Mommy's sacrifice, its just a part of us. Bipolar or not.

So please do not look at me as if I am some evil monster lurking on this board. I really do have ALL the symptoms of MS. At this time I am also a regular member and visitor at the fibro board, the CFS board, and the Graves Disease board. I do have Sjogrens and am a member of that board but I like to blow that one off. Enough other shit to worry about. I am not FAKING my symptoms to get sympathy or pity. I am not having bipolar episodes and becoming a melodramatic hypochondriac. My pain and issues are very very real and I do not make them up. I have a lot of anxiety issues also and sometimes I can get too carried away over something simple like continous deep pain in both of my thighs. But hey give me a little break here!

I will always do the same for you. You guys are my friends. You have NEVER judged me based on my having bipolar or anything else. You treat me like you treat others. Good for you. You know the song by Pink Floyd-----"Us and Them"???? Well all of the "Us's out there say THANK YOU!!!!!! We really need more of you in this extremely prejudicial world we live in. Take care!!! Friends 4ever!!


Now LISA, I will be sending you a private message which I feel is a more appropriate place to take these sort of matters than the board. The board is not for telling someone that her MS problems are "all in her head" due to her mental illness. I am not mad just a little upset. Please read the message and see what you think. I will try and explain bipolar a little more to you as well. I know your husband has probably never really tried. Guys with bipolar are not very good at explaining all their deep dark feelings. Thats why they get pissed off and have tempers. Their only outlets. God Bless and Keep them, every single one of them.....C Ya in a Bit!!!!........Tamye

Tamye, I know how it feels to not have a diagnosis. For years, I was told my that symptoms were anxiety. Then, after my son died, I was told that they were depression. I finally talked my PCP into doing a MRI on me. My symptoms are very similar to yours. Pain, cognitive issues, jumping toes (and legs), numbness, weakness, memory problems, the MS "hugs", bowel issues...My PCP suspected MS but first did a whole panel on me because all of those symptoms can actually be explained by a Vitamin B12 deficiency, too. My labs were fine, though, so she went for the MRI. We were convinced that it would show lesions. Although it did show a couple, the more important thing was the fact that my brain was hanging down into my spinal cord. As a result, I also had a cyst in my spinal cord. Both of those were totally unexpected.

I'm not arguing that you do or don't have MS. Heck, I'm no doctor or radiologist. I guess what I'm saying is that before being diagnosed with Chiari Malformation and Syringomyleia I have never heard of either one of them. Neither had my doctor! She had to look it up and send me to a specialist.

Your symptoms are very real and causing you a lot of problems. As many people have pointed out, though, MS symptoms can mimic a lot of other things and vice versa. Is it possible that you have something else, something that's really rare and just not showing up on these tests? Or, could your symptoms be unrelated and parts of all your other conditions? I have trouble sometimes knowing what ailment is linked to what. I have endometriosis, for instance, and the pain in my pelvis has nothing to do with my brain abnormality. On the other hand, my bowel problems ARE a part of the brain thing. Go figure.

I remember an episode of THE GOLDEN GIRLS where Dorothy was diagnosed with CFS. Nobody would give her the right diagnosis. Finally, a doctor told her that there were lots of diseases and conditions out there that they just hadn't discovered yet or didn't know anything about so just because she didn't have a diagnosis didn't mean she wasn't sick.

So I hope you get to the bottom of it soon. You were supposed to hear from the MS specialist today. Did you get any news?

I wanted to add, too, that my friend Malin (giving her name in case you do a google search on this) in Sweden has Chronic Fatigue Syndrome. She has a very, very rare case and is actually bedbound and can't even sit up in a wheelchair anymore. She also has symptoms that are similar to MS. She's actually been on TV and articles have been written about her. So sometimes things affect people in different ways.

I frequent this board because my symptoms are similar and the Chiari board is really quiet.

Just hoping you have a good day today (:

Tamye,

I am very sorry you took my post out of context. I wasnt trying to be mean, call you out on anything or say that all your problems were in your head. I wasnt even trying to say that you do not have MS. Like I mentioned before, we are not doctors here.

My main point was that since you do have BPD it is very important that you be on consistent treatment for it, which includes regular appointments with a therapist, because it can and will contribute to physical illnesses.

I have not received a private message from you but I will say this I am in no way an expert on bipolar disorder, but I do understand it very well. I doubt there is anything you could tell me about it that Ive not already learned through years of research, many discussions with my husband and his doctors and simply lots of years of loving a man with it. BTW: Those deep dark feelings you spoke of have scared the hell out of me at times. But I finally understand that they are by-products of this nasty disease and not how my husband truly feels.

Once again, Im sorry you took my post so negatively. I wrote it as someone that understands this particular illness very well, how it can affect your health and out of real concern for you.

Lisa

I can understand your frustration.

I had clear cut symptoms but was told over & over again that it was in my head. I had a long history of mental issues. I kept wanting to know what was wrong not b/c of a desire to be sick but to have answers. Thinking that once I have a dx I can get treated. Get on with life & to have answers to make my life make sense.

In my case the dx came to late & now have to live in a long term hospital as I can not function at home.

Keep trying to find your answers. if you ever need to talk or vent I am here for you.
Take Care of you
Hugs

Tamye, I am sorry you feel so unwell. I read a lot of your posts and am struck by the enormity of diagnosis's you have been given. I have positive epstein-barr thru mono 30 yrs ago, I was hospitalized for 1 month. But it in no way effects me so seriously. I also have had a positive ANA at the highest level...640 but nothing was diagnosed from that. And alhough I have been tested again that was at my request. No doctor followed up on it. I think it predicted a strong auto immune response that turned out to be MS. When I had the first attack I was dx with fibro and lived 9 years believing I had that until I was told I had MS. And I never fit the full criteria for fibro - I did not have 13 points or whatever it is. I am still not convinced fibro is an actual condition. I have met too many people dx with it only to find out later they had something else entirely different.. 1 lady had a malignant spinal cord tumor,

Its not uncommon to have more than 1 autoimmune disorder. I told you in an earlier post my Mom had UC and later in life developed eye symptoms like yours leading to a dx of ocular myasthenia gravis. I have dry eye and use Refresh eye drops/lubricant.

Your pain sounds like peripheral neuropathy - nerve pain treated with a variety of anti-seizure drugs usually.. Mine responds to amitryptiline best. Nerve pain is the worst kind of pain. I also use icy hot, tiger balm and ice.

If you have had the battery of tests done for MS it should be showing an answer and you will find out soon. I hope you don't have it because it will way overide these other conditions.

The MS hug sounds puzzling. In my experience you get it and have it squeezing until it lets up. I have never had one after another like you describe but that is my experience.

My real question is what are you doing to manage all these symptoms? Doctors don't always have the answer. I have found Herbert Benson's Relaxation response tapes to be beneficial. As well as Japanese Acupuncture which directly addresses auto immune disease. It sounds to me as if your body is in overdrive for what ever reason. I assume you have a rheumatologist and infectious disease doctor managing some of this.

Perhaps trying to address the symptoms rather than searching for the cause will benefit you. Obviously if it is MS you will need to try some treatment but it doesn't end there. Massage of legs/feet, my other ideas should at least help symptomatically. And I strongly believe that any auto immune condition needs treatment with complementary medicine for the best outcome.

All the best,

Melanie

Hey Tamye, ((Hugs))
I'm sorry you have been having such a rough few weeks; especially when you were on a vacation! I just feel that I have to tell you that, WHENEVEA I go on a vacation it would just exshaust me the next few days/ weeks afterwds! It was always as if I needed a vacation FROM the vacation.
The last weeks vaction for me was in 2009; I went down to Atlantic City NJ with my mum for a week. SURE it was fun there; but I can remember some of my MS symptoms really flaring up for me the last few days there and staying to make me mizerable for atleast a week longer. NNNOoo it was NOT because we lost alot at the casino$; it was just really because we were at a different place, doing different things than we normally do.

Stress really does terriable things for people with or without any disease. Time and rest are really our only friends; THEY help settle things down.

I too am struck by the enormity of diagnosis's you have been given. It's amazing you are still walking around!

Thoughts and prayers for you.

Tamye,
I too was diagnosed with being depressed, not BPD but being depressed and having anxiety/panic disorder. My doctor's kept brusing my symptoms off and until they became worse and I insisted on getting a lumbar puncture. Sure enough I was diagnosed with MS and immediately went on Copaxone injections. WHAMO, replases slowed down. My advice would be to find a new neurologist and insist on a LP to finally see if it's MS or not so you can start treatment! BIG HUGS TO YOU!!! I pray you don't have it, but if you do...we'll get through it!

Tamye
I read what u wrote and i'm sorry ur in pain like this.
U sound like me!
I'm also bipolar, I have MS and CHF { congestive heart failure } caused by a un known virus.
I got a pacemaker put in July last year. Still hurts like a bitch.
I'm having a huge flare up as well of MS.
BUT have no current doc for a cat scan to see if new lesions are forming or formed , Because I have new symptoms.
It all just sucks so much!
I can't have anymore MRI'S due to the fact I have a pacemaker in me... Mind u all this and i'm 38 ....
I can't take the shots for MS , the counter react with my body.
i'm only on zanaflex atm and it kinda helps.
what I would do is find another doctor and get to the bottom of it all. actually I went through like a year of being un diagnosised, it's bullshit!
The whole time was pain , pain pain , numbness , ect..
I'd say find another doc who actually give two shit's and go from there.
Hey I had to too. Gota do what U feel is right ...No one else!
when they see " bipolar " people { most } take it as it's all in ur head , or she's a hypochondriac... it's ALL bull...
it is what it is and dont u stop until you are happy with ur results and finally get a diagnosis.
I'm always around if U need to vent or just talk...
Good luck , keep us posted woman!
Always Silky ~

Well I tried to answer but my silly phone messed up on me.
LISA, I was not going to teach you the mechanics of bipolar, you probably know more than me. Since your bipolar love is a GUY and like most guys..normal and crazy..he probably does not express his feelings very well, I was going to try and let you see how it REALLY FEELS to actually be THE bipolar one and not the spouse. Cuz you see if I had not made the HUGE mistake of letting this board know I was bipolar, well then you would have all thought I was just a NORMAL person going through "crazy times" trying to get a dx.

How many other people on this board openly admit that their doctors have thought they were crazy or hypochondriac? Besides as far as I'm concerned we are ALL hypochondriac...that is in thetrue meaning of that word, which just means being melodramatic about pain or symptoms. Well gosh, aren't we all doing that every single time we post to this board about some pain or symptom we are having??? Otherwise we would all just cowgirl up and shut up. We come to this board because of our emotional health. Maybe there is no one else who understands, or no friends, or people are sick of us being sick. Whatever the reason we should be able to trust the people on a support board to actually SUPPORT us.

I, unfortunately, have lost that trust in this support board. Even our guide here chooses to make comments that really are not called for and most definitely not nice..."...its a wonder your still walking". Now this could be an innocent statement but I did not take it that way. Yes I do have ALL those diagnoses plus chronic bronchitis, chronic sinusitis, scoliosis, and pre-diabetes...AND...thats all I can remember at this moment. You all seem to think that people only get ONE autoimmune disorder in their lifetimes...well like many of you just love to say...you are NOT doctors...talk to any rheumatologist (uhhhh..folks who specialize in autoimmune disorders) and they will tell you that these disorders come in clusters. Good book I am reading called "Women and Autoimmune Disorders"...excellent book for those who can handle the truth and understand physiology.

Whats this business about not believing in fibromyalgia and at the same time thinking I am not in the process of getting RA because ur numbers are so much higher and you were not dxed? Is that supposed to mean that al those poor people in constant pain from an as yet un-figured out disorder, which by the way is totally accepted by the medical community, are nothing but liars?? Well in the early part of last century, if you had been around, you would have been calling diabetics liars as well. Yup...diabetes once had the same rep as fibromyalgia. I guess you don't believe in Chronic Fatigue Immunodeficiency Syndrome either do you? What are you, some kind of disease elitist? If you are not dxed with MS, well then you just better not darken up the virtual door of this support board.

I honestly can not believe that some of you think you have the actual right to question me about any thing in my life. And to think I have gone out of my way to reply to many of your posts having to use thisstupid swype phone that is always swyping foreign words. It is a shame because I have made some good friends here and even gave out my home number for those in crisis...something not many people who have been on this board a long time did...

BUT like I said I no longer trust and must make my way to the other support board. Well I can sure tell you no one is going to have a clue that I have a mental condition there. As far as anyone trying to respond to this...don't bother. This site gets erased from my phone as soon as I hit "add"...well maybe after I have smoked first. Learn ur lessons...the Lord/Buddha/Allah and the others all have said "do not judge" and "treat others as you wish to be treated" ..... Figure thats a good enough way to end this here mini book. ..Irishrooster

hi everyone!!-- well- the last time i checked-bi-polar, doesnt cause ,dancin toes??- thats just -rude-

That's not quite the way I took Lisa's comments, or Choppel's. Sometimes, support comes in the form of helping someone explore different avenues when the one they're going down doesn't seem to fit or work.

I understand what Choppel meant. In the course of three months I lost my son, my mother-in-law, and both of our dogs (they were poisoned). My mom had a stroke, my dad had a heart attack, and my husband lost his job. During that time, someone said to me, "I don't know how you're even getting out of the bed every morning." Frankly, at that point, I didn't know either. I took it as a sign of admiration for the fact that I was still functioning, not an insult.