Please, help me...

[shudson71]

Hello everyone, and Merry Christmas!

My name is Stephanie, and I am desperate. I am tired of feeling like a hypochondriac that can do absolutely nothing but sleep for a few hours at a time. My doctor treats me like I am crazy, and I feel like he is just placating me with various medications to try and find something that works.

But let me start from the beginning...

I am 43 years old, and have never been diagnosed with anything serious in my life.

This all started about a year ago, and honestly, I cannot remember the first symptoms other than an overall dull ache throughout my body. It got to the point I couldn't type without pain, and even opening a water bottle was too much for me. I am just going to list symptoms I can think of today!

- The bottom of my feet and palms of my hand itch SO bad. I dig at them until they bleed, but I never have any sign of a rash. Anti-itch stuff doesn't do a dang bit of good nor do over the counter allergy medicines.

- Exhausted 95% of the time. That other 5% only lasts for a couple hours at best. Everything, and I do mean everything, tires me out. I can get sleepy simply brushing my hair and teeth. Now my sleep is odd. I can be "awake" then I get so tired I feel like I have narcolepsy. I have to sleep now. Yet, I rarely sleep for more than 3 hours at a time. Heat makes it worse. I am not depressed.

- I have trouble walking sometimes. About twice a week, one of my legs just doesn't function. I am not sure how to describe it. It is like the brain didn't send the message for my foot to lift and follow through with the stepping process. My hips hurt me a lot akin to a few hours here and there of the sciatic nerve acting up. My feet tend to go numb and fall asleep even when I am up and moving. No build up, it is just bam, there. I have been putting it off to the heat and insane itching, but now its winter and I can't blame heat. Though I have learned socks are friggin evil. Yet, my feet will get intensely cold a few times a week.

- I go numb not just in my feet. My scalp goes numb and begins tingling... I know, weird. Various parts of my body just goes randomly numb. Oh, and the feeling of pin pricks happen often. Some times they will feel like I am being jabbed with an ice pick.

- Muscle spasms are getting progressively worse quickly. I have one in my left side that doubles me over and takes my breath away. My legs do it a lot if I do any kind of stretching. My feet will cramp.

- This is graphic! It is about pooping. I never know when the urge to hit me will go, and well, I have minor accidents. This is completely new in the last year.

- This last few months swallowing has been another one. I keep choking on water... yes, water. It is like it goes down the wrong pipe and I feel like I am going to chose to death. I can choke on other things but water is the most common one. It hurts so bad.

- Apashia? The last couple of months it has worsened. I have never had a brain injury. Last night I wanted a glass of milk with dinner, and my husband went to go get our drinks. He brought me back water. He swears I asked for water, but I heard milk. This happens all the time. It actually scares me because I have no idea what it is or how to make it stop.

- I am dumber. I know that is probably not the correct thing to say, but it is what I say because I don't know what to call it. I can't remember things like I did a year ago. I cannot have intellectual conversations anymore because I cannot keep up. I get lost. Don't understand what they say. Making a decision is out of the question.

- I just learned reading here about something called MS hug. About once a week now I have this squeezing sensation throughout my chest. I feel like I can't breath for a second, and it radiates then subsides. But the discomfort lasts for a day or so. Like if I breath too deep it will cause another episode. Not sure if that is an MS hug. Whatever it is, it scares the dickens out of me.

- My eyes are sensitive to light to the point of severe migraines if I stay outside too long. About 2 years ago, I had severe pain whenever I moved my left eye. Like my eye was too big for the socket. The eye doctor called it something, and then asked if I have an inflammatory disease. I said no, and it went away. My eye sight has changed tremendously and they hurt a lot.

- The pain. Some times I wake up unable to move and have to have help getting out of bed or I crawl out backwards. I will be having full body spams, tightness, and tingling. I cannot stay in one position for more than a few minutes without the pain starting. I have ants in the pants.

- I am tired of living in a long, drawn out headache.

- Burning sensation and ants crawling on me. I get this burning sensation that feels like someone laid a hot iron on a part of my body. If that isn't bad enough I almost always feel like I have tiny bugs crawling on me.

I know there are other symptoms I am missing, but that is what I have for now. I will let you know what tests the general practitioner has completed.

Basically every blood test known to man. Everything comes back fine. I was low on vitamin D, but have that in normal range now. X-rays show nothing. Had an upper scope done and discovered I have a hiatal hernia. Take prescribed prevacid for that once a day. No hormone problems. No inflammatory markers. No hepatitis. Nothing.

The doctor now treats me like a leper hypochondriac. I am not crazy and I am not making this stuff up. He has tried me on Neurontin and Cymbalta. Neurontin made me mean and crazy. Cymbalta, which I have been on for about 6 months is NOT working on everything. It has taken care of the pin prick and heat feeling, and for a while, it took care of the itching. Right this moment though, it is all there and I am not a fan of Cymbalta.

He refuses to take me off of it. Says it will work best for my "fibro". Though he has never done tests. It is simply something to label the pain. He refuses to give me anything to help with the pain itself or a muscle relaxer. He diagnosed me with IBS because I get those friggin severe muscle cramps in my chest. It isn't in my abdomen. They did an ultrasound to check for problems and left me in a feverish pain I cannot easily describe.

I made a list of symptoms and he didn't even look at it. Showed no interest.

I am at my wits end. I have no idea what to do or who to call. This CANNOT be normal. I am not making this up. I can barely clean my house, and I sleep, well, randomly throughout the day and night whenever it overtakes. Does anyone have any advice, please? I am desperate.

Thanks for listening to my long, drawn out story! It actually feels good to say it.

Much love,
Stephanie

[jimmylegs]

hello and welcome stephanie i've experienced many of your symptoms and the good news is, you might be able to take action to alleviate some if not all of them. the ones that were the biggest relief to get rid of were the choking, and the dumbness. at one point i thought i would die from my terrible throat issues, and at another point i could barely figure out how to cross an intersection. all better now

if you're interested, i'm going to refer you to a post i wrote to another member yesterday, that will link you up to some potentially useful reading along several different and possibly relevant lines of inquiry: http://www.thisisms.com/forum/undiagnos ... ml#p231198

PLEASE don't fall into the trap of looking for a single magic bullet. you're a complex system. treat yourself accordingly

[lyndacarol]

Hello and welcome to ThisIsMS, Stephanie (shudson71).

You are NOT a hypochondriac; you are NOT crazy; your symptoms are NOT normal; we know you are NOT "making this up!"

PLEASE watch the following video: Diagnosing and Treating Vitamin B12 Deficiency: "Everything You Want Your Doctor to Know about Vitamin B12"

In my opinion, you MUST watch this 50-minute documentary featuring Sally M. Pacholok, RN, BSN, & her husband Jeffrey J. Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses); Lawrence Solomon, M.D., hematologist, Yale Medical School; Ralph Green, M.D., hematologist, UC Davis; Donald Jacobsen, PhD, Cleveland Clinic (Homocysteine Research Lab)



You say that you have had "every blood test known to man. Everything comes back fine."
@1:23 Pacholok says, "The neurological manifestations well precede the hematological manifestations."

I find all your symptoms in this video, sometimes VERBATIM (especially in part 4: The story of Torri – her doctor prescribed Ativan; yours, Cymbalta).

Perhaps you can find the book, Could It Be B12? An Epidemic of Misdiagnoses at your library. It is an excellent book, well worth reading – even if you have to buy it.

We are glad you found us. We are good listeners. We are not "experts," but we are willing to offer our opinions. We wish you the best. (About your doctor…

I made a list of symptoms and he didn't even look at it. Showed no interest.

My personal suggestion: find a new, more compassionate GP! Or even ask for a referral to a hematologist.)

[Youarethecure]

Find a new doctor. It sounds like the doc you are seeing is horrible.

[Scott1]

Hi,
I agree with the comments above. In particular to find another doctor. If you know what the tests you have had are, with or without the results, we will have a better idea about what you should try next if you share them with us. A lot of tests can be thrown at you because they are easy to ask for but are not necessarily the right ones. The trick is this game is not to guess but be as informed by reality as you can be . Tests can be useful so try to know the actual outcomes. Doctors can be reluctant to share them with you. It shouldn't be a guessing game.

Regards