I'm frustrated and not crazy like all of the Dr's are saying

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I'm frustrated and not crazy like all of the Dr's are saying

Postby tgc » Sun Jan 24, 2010 10:43 am

So I haven't been diagnosed with MS, but they have started ruling other things out... vitamin deficiency, brain tumor, etc.

Basically, I have been told by my GP, neuro, and most of my friends and family that I am stressed and that it's all in my head. My husband is really supportive, but I can tell that even he is frustrated sometimes because I can be totally fine one day and then thrown for a loop the next.

My symptoms first started July 2009. I was extremely fatigued, and began having severe muscle spasms in my mid-upper back (I didn't sleep for about a full 48 hours because the pain was so intense and I was so uncomfortable in any and all positions). I am an RN, so I figured that I had just tweaked my back at work sliding someone up in bed or something. The pain/spasms finally eased off, I fell asleep and then woke up the next day totally normal. Then towards the end of July, I started having numbness/pain and tingling in my left foot. I was on a night shift and I figured that I just had tied my shoe to tight or something like that. The next day I was walking around the mall and both of my hands and feet went completely numb and stayed that way for about 3-4 hours and then just went back to normal. That kept happening through most of August. Also, throughout this whole thing, I was having terrible headaches with no relief from OTC remedies, sleep, nothing.

I went to my GP for the first time with this whole thing in mid August (she's really busy and there's about a two week waiting time to get in.. that, and she is always on vacation it seems like...). Anyways, she told me it was just stress and that I shouldn't be concerned. Of course I was still concerned, so she sent me for a CT scan and for bloodwork to see if there was anything to rule out. Nothing came up on the CT scan or any of the bloodwork, so she was happy with the diagnosis of stress, but since I was still worried, she said she would set up an appointment with a neuro in Regina (the nearest big city where I live). And then I was fine for about a month, with no symptoms, no anything, so I was like... did that all really happen? Am I just going crazy?

And then again towards the end of Sept, the exact same things started happening again. At the end of this set of symptoms (which lasted about two weeks this time, only) I went to bed one night with mild spasming in my back and woke up with CRUSHING back/chest pain. It was like someone put a belt around my diaphragm and cinched it TIGHT. And that lasted about two days. Also, at this time I had trouble walking... I was stumbling and tripping over my feet, but I couldn't tell if that was because of my back/chest pain or not. Anyways, I made another appointment with my Dr again, but I couldn't get in for a week and by the time I was in there, I was completely back to normal again with no symptoms. So she made be give a urine sample (to rule out a UTI, or kidney infection I imagine, because of the band of pain all the way around, she was thinking flank pain...) Anyways, obviously nothing came from that and everything came back fine, and so once again, she was like, you're stressed. You probablly had an anxiety attack.

Then I had my neuro appointment in Dec. (for which the neuro was in the room for about 10 minutes, most of the assessment was done by a student). The very first thing he asked was how my stress levels were. No questions about symptoms, nothing. Anyways, I asked him about an MRI at the end of the appointment, because he hadn't even brought it up yet, and he said he didn't think I needed one, because I didn't have anything neurologically wrong with me. I said that I would like to have one just for piece of mind, and he said fine, but that I was going to be the lowest priority on the list. And that was pretty much the end of the appointment. So not a good one for me.

It's been almost two months since my neuro appointment and I haven't heard anything, and I just started having symptoms again after not having anything for almost 4 months.

I'm just frustrated because it seems like no one is taking me seriously. I'm pretty young (21), and I think part of my problem is that I have had a history of anxiety and depression. But I have been on meds since my last anxiety attack (in Jan '09) and have felt great since then (except for this whole thing now). At the time of my last anxiety attack (in Jan 09) I was finishing off my degree, had been married for less than six months, was buying a house, looking for a job, and was not talking to my best friend. All of those things were totally situational and are totally looked after! I'm settled into my house, my husband is great, I'm totally done school, I have a great job and that friend and I worked out our issues! I am the least stressed that I have been in the past four years, so it drives me crazy that everyone has been telling me that "I'm just stressed". Them telling me that makes me stressed. Anyways. So I have no diagnosis, no answers, no idea when I'll get my MRI and still having symptoms. Right now, at this very second, I'm also just really frustrated because I am having the back/chest pain again and I don't even feel like going to the Dr's because she'll just write me off again. Anyways. This is like a novel, but oh man, it feels good to just send my story out there into the universe.
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Postby oreo » Sun Jan 24, 2010 12:07 pm

It's very difficult to dea with the world when you are frustrated with it. What you need to try and do right now is take a figurative deep breath. MS is not easily diagnosed and if your GP isn't on board with the likelyhood of the diagnosis, that doesn't help.
The waiting to hear from the MRI people can seem like an eternity. You might just give them a call however to make sure that you are in the queue.
As for the neuro, I remember my first visit well. The guy took a little history, was most displeased that my GP had pretty well settled on a diagnosis of MS and had even ordered the MRI. After all Dr. Neuro was the expert, he would make those calls. A five minute examination which consisted of little more than watching the finger move around and touching my fingers to your nose yielded the stunning comment "Well there is definitely something wrong, but it is still too early to call it MS"
Once we had the MRI results however, the story changed to - you guessed - "You have MS".
It is also important to remember that anxiety and depression are both symptoms of MS so even if you do have a history of them it may just have been the early manifestations of the disease.
Hang in there!!!
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Postby twistymirrors » Sun Jan 24, 2010 12:23 pm

I agree with oreo, I would call the MRI department to see if he actually put you on the list. I had both my mri's within a month and i was told by Dr O'Grady that my second one would take a few months to get in for.
Also maybe ask your dr to send you to a neuro in saskatoon(the ones here in regina arent that great).
I've also been told by the neurologist that there is nothing neurologically wrong with me but my symptoms just keep getting worse(with me I have only had a couple weeks relief from symptoms since march). The last time I talked to Dr Rehman he finally admitted that it does sound like I have neurological problems and that he would send me to Dr Shawush. And now I cant get an appointment with Dr Rehman for anything.
The ENT Dr. O'Grady has been good(my main symptom is vertigo so my dr sent me to him as well) The first thing he said after i explained all my symptoms was that it sounds like i was having ms symptoms. So I think I will probably get a diagnosis from him.
Hope you start getting some answers soon. I've been in the game since march and still no answers.
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Postby LR1234 » Sun Jan 24, 2010 2:13 pm

It took me 14 years to get a diagnosis and I was also told it was stress and all in my mind for many years. You know your body better than anyone else, believe yourself. If I were you I would start something like the Best Bet diet and taking supplements as it will help to have a healthy diet whatever is causing the problems x
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Postby lyndacarol » Sun Jan 24, 2010 3:38 pm

tgc--You know your body best. You seem to be functioning at a high level if you are working.

See your GP; schedule thorough testing of endocrine hormones (especially insulin, thyroid hormones, cortisol, etc.). If you are transferred to the domain of a neurologist before checking out other possibilities, the neuro will generally not consider tests or possibilities outside his jurisdiction. Try to follow a low-carb diet. Reduce your consumption of soda pop (whether sweetened with sugar or an artificial sweetener).

Your job as a nurse must be stressful, but even stress has a physiological component to it-- it is not "all in your head." Stress causes an increase in cortisol, the primary stress hormone, as I'm sure you know. Cortisol increases sugars (glucose) in the bloodstream; glucose in the bloodstream increases insulin secretion (which I suspect to be fundamental in MS). If you learn of techniques for stress management, please share them with all of us here -- stress is a problem for most of us in this modern world.

Or there can be simply a dysfunction in one of the glands; for example, the adrenal glands can simply be making too much cortisol.

Best of luck.
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Postby tara97 » Sun Jan 24, 2010 10:18 pm

one day after being told i was crazy for so long, I decided to see what happened if I embraced crazy. the important thing is to let them know that it is psychosis and not neurosis that they are witnessing. ill be darned if the doctor tried to argue with me and say I wasnt really crazy. doctors are hoplessly stuck on mediocraty in the country. they dont messure their success by the survival rate of their patients like they should. btw read the member stories about porphyria on the porphyria web site foundation. I read those stories and they sounded like mine so much that I began to cry. I have that back pain too. it always happens before my legs go lame.
it is axonal motor neuropathy that you are experiencing. that stomach pain/back pain is the hallmark of porphyria. take a look at what meds you are on and if the sun bothers you, if your period bothers you anyways take a gander at the foundation site and see if it sounds familiar.
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Postby JenniferF » Sun Jan 31, 2010 7:13 am

tgc,

It is surprisingly common to be told your physical problems are psychological. For reference: I have a friend who has an *actual brain aneurysm*. (And a serious heart condition, and other life-long documented health problems.) At his last neuro appointment, the doc focused on "depression", when my friend mentioned he was very easily fatigued. Um, okay.

Now I will tell you that visiting unhelpful doctors is quite stressful, and can cause anxiety attacks. You can usually distinguish anxiety-induced complaints from others by the following:

-If the symptom is constant, it appeared when the source of anxiety appeared, and will stick around until you address the underlying concern. It doesn't fluctuate with some other obvious trigger. For example, constant stomach pain that doesn't vary based on what you eat, time of day, etc.

-If the symptom comes and goes, it comes and goes based on the psychological trigger.

During my trials with my mystery ailment, I did actually develop some anxiety-induced symptoms that were similar to my other physical problems. The difference: the anxiety ones came and went depending on my thoughts; the regular ones often surprised me, could appear when I was completely relaxed and happy, etc. (And with time, I've been able to sort out some of the triggers behind the physical ones, and they are quite consistent physically.)

***

I don't know whether you have MS. It sounds you like you do have some kind of serious neurological condition. I would encourage you to:

-Focus on being as healthy as you can, because no matter what your condition, the better your nutrition, rest, exercise, etc, the better you'll do.

-Find some people (such as here, but some in real life too, if you can) who understand how dumb doctors can be, and who can provide you with encouragement and reinforcement when everyone else thinks you're nuts. [You might be nuts, but you aren't nuts enough to cause drop-foot.]

-Do your best to sort through your symptoms and see if there are any patterns. That will help with diagnosis.

If your symptoms were slow and mild and you were older, I might suggest taking a doctor break. But given your age and the speed at which this is going, you really should try to get to the bottom of things. I don't know your financial situation or what doctors are available to you, but it might be helpful to see if there is someone who will refer you directly to a reputable MS clinic.

Good luck -- I feel for you. You don't deserve to be treated this way. You aren't crazy. Take care of yourself, and do the best that you can.

Jen.

PS: someone else here once mentioned heading to the ER (or urgent care or doc-in-box) the moment a dramatic symptom started. So that you have actual doctor witnesses to see the event. That might be a strategy to consider.
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Postby Bethr » Sun Jan 31, 2010 12:36 pm

I understand your frustration. Don't give up your search to get your health sorted.
There are other diseases that mimic MS. I've just found out what I really have, and my sister too (combined 22 years of thinking we had MS).
It's called porphyria, here's a link to explain it.
http://www.nectarine.com.au/othersites/porphyria/what.htm

It causes MS like symptoms, and even lesions in the brain and other neurological maladies, anxiety, depression, you can lose control of part of your body, vision problems, spasticity. It is exascerbated by stress and contraceptive pills and a number of foods (beef & dairy in our case), alcohol and also if you contract hep.c., and many commercial drugs. There are also a lot of drugs that we will not be able to take, including anasthetics for operations and even the ones you have at the dentist. These are all dangerous triggers for our family.

It was believed to be rare, but they are coming round to thinking it may affect as many as 1 in 500. Combine it with one hemochromatosis gene (which my family all have, it causes mild iron overload), and you get a fatigue and sleepiness on top. One in 7 Europeans have this hemochromatosis gene.

Talk about mimic MS. My sister and I have been to hell and back before I took the time to research it all. I could not rely on my doctors to sort this out. They have probably never had a patient with it before.

You do not have to have the hemochromatosis gene to have the neurological symptoms, the iron overload just causes the fatigue and aching joints.

It can be cheaply tested for, so to you and anyone else out there who isn't going to accept the common diagnosis of MS. Get it checked out. It's easy to get rid of symptons and I believe the brain lesions reverse once treated.

I have a mission now in life, to help as many people as I can with checking for this problem. It is not MS and it may be more common than they think.

Hope this helped and good luck on your search.

Cheers..........
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