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Old 01-30-2010, 06:17 PM   #1
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Need advice!

I am a 32 year old female.I am relatively healthy, until the last few years. Two years ago, I started having extreme fatigue, sleeping sometimes 18 hours a day with no releif...I was diagnosed with mono (but a later Dr said the test was not conclusive) The last year or so, I have been experiencing a host of symptoms, and I don't know what to do next! Last spring, I had an episode for a few months where I would suddenly become short of breath, feel faint and have flushing on my skin (looking like a sunburn). I would also have very low bp. My physician did not know what it was, but determined my vitamen D level was ridiculously low. I felt better for a few months after taking massive doses of vitamen D. Then, in September, I noticed a strange headache off and on for a few weeks, not like any other headache I have experienced, localized above my left temple. This became increasingly worse, accompanied by facial twitches, muscle spasms, lost 14 # in 2 weeks, nausea, diarreha, vomiting, extreme dizziness, blurred vision in one eye and sometime temporary blindness (with many times of seeing "floaters", all in the eye on the side of my headache). I have now had a headache for over 4 months straight. I have had various degress of loss of balance that seem to get worse when the headache is worse. I have had a CT, MRI, blood work up. The Dr. did send my MRI (on my head only) to the MS specialist, but no lesions were found. The stomach symptoms have lessened, and the headache intensity is less, but still constant. I notice the twitching most at night, or when I am very relaxed. The blurred vision is off an on, at times I see bright orange through one eye.

I now have constant hip pain, mainly on the same side as my headache (left) but aching in both sides and constant pain right above my lower back in the middle. I had an EEG two days ago and am waiting for the results. I am wondering if hip/back pain is common in MS and if my symptoms match other people? MS is the closest diagnosis that I have found to my symptoms...are there other things I should be investigating? I am also very frustrated and fed up with the Dr's I have been too...the common sentiment seems to be "we don't know what is wrong with you, we will keep giving you drugs until you feel better" (actual quote from my dr). Is MS diagnosed through a MRI of the spine?

I have been on 9 different migraine medications, a blood pressure med (which made me violently ill)...steriods. Currently, I am taking hydrocodone about 2ce a day to take the edge off the headache. Does anyone have advice about getting a diagnosis? What should I ask for next? This is severly impacting my mental health, marriage, work and friendships (not to mention my physical symptoms). Any advice would be greatly appreciated.

 
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Old 01-30-2010, 08:06 PM   #2
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Re: Need advice!

The MRI should be done with and without contrast and I would have the MRI done of the head, cervical spine, and thoracic spine. Keep in mind that lesions may not yet be visible.

There are a multitude of tests that need to be run. I think I would see a neurologist who can help sort out those things. With any luck, your neurologist can ascertain your problem- whether it is or is not MS. I would get together with a neurologist who deals with MS patients. If there is something neurological that is causing your problems, he can help; if not, he can refer you to a specialist. Off hand it would appear that something other than MS is happening, but I am not a doctor and I have long ago decided that I would never dismiss another person's intuitions. I think that intuitions or insights are often "on the money".

It seems, from what you read, that your doctor has already done much for you. Perhaps your own doctor can get you a referral.
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Old 01-30-2010, 08:58 PM   #3
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Re: Need advice!

Hi there. You asked if hip and back pain are common MS symtoms, and the answer is no. However, like Jayhawk said, nothing can really be dismissed. Some people develope these symtoms due to actually having other, more MS like problems. For instance, if your gait (walking) is off, due to balance problems, you can throw off your back and hips...causing problems down the road. If you have a lesion in your neck, which affects your posture or gait, it can also cause these problems...but in general, muscular problems is not related to MS....

However, many of your symtoms do sound neurological and should continued to be monitored. May I also suggest that you start talking to a good neurologist about the drugs you are on? Many migrane meds have side effects...and some of the problems you are having, COULD be relatd to the drugs you are on.

MS is always a tough one to diagnos simply because so many other things present like it....it can only be dx by ruling out everything else. So, if you have started the tests, dont be surprised if they have to be repeated. As was stated before, you need to have a MRI of the Head, C spine and T spine, with and without contrast, in order to say you really had a work up for MS done. No other imaging test is as conclusive. Blood work, rules out things like vitamin deficiencies and sometimes LYmes Disease- it can also test thyroid functions and for infections....it should definately be done. Having other tests done - whatever is suggested SHOULD be considered because once you rule out everything else, you get closer to being diagnosed.

Although Im sure this is taking its toll on you, please do your best NOT to allow it to take over your life. Anxiety will also present you with actual medical symtoms....you need to try to control the anxiety and the "not knowing" and work on the positive, getting some answers. The not knowing is the hardest part.

I hope you find those answers soon and that you feel better.
Nikki
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Old 01-31-2010, 09:18 AM   #4
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Re: Need advice!

Thanks so much! I guess I just needed to hear I am on the right track. I have had a nightmare of a time with the Dr.s and trying to get appts, etc! And, just to clarify, these symptoms are present with/without any medication. I just started taking pain killers a month or so ago when nothing else worked (and only as needed-usually once a day or so, headaches tend to be worse as the day goes on)! I discontinued all other med's after taking them for the recommended time with no releif and terrible side effects (Side effects worse than the problem!)

I will see the neuro this week in regards to my EEG. I will def ask him about the MRI scans (I am not sure if the previous scan was with or with out contrast)...
THanks so much!

 
Old 01-31-2010, 09:49 AM   #5
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Re: Need advice!

Youre welcome. Keep asking questions! As you can see, we are a very opinionated bunch! But seriousy, if you can think of others, ask us- and we'll help you form a plan to talk to your doctor! Its really important that you trust your doctor and feel that he is helping you....and its not a law that you have to stick with this doc if you feel that he isnt.....he might even appreciate you asking him if he thinks he CAN help you, or if he knows of someone else who might...
Sometimes, all they need is alittle incentive to push further, and they will either refer you to someone with more experince in your issues, or amazingly enough do their homework and find another path to try to help you!

im sorry you have had such reactions to meds....I have alot of Neuropathy and have reacted badly to every drug on the market. Its frustrating. Especially while I sit home and see commercials for "miracle" drugs which are being prescribed for my own pain- but have never had any luck taking them. I feel YOUR pain! However, if they are treating the wrong thing, then its also possible that you need a new direction. Right now, you simply need to continue the testing process and decide which direction is the right one to follow....its a long, tedious haul getting answers- but at least your headed that way.
Let us know if we can help any other way.
Nikki
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Old 02-01-2010, 07:11 PM   #6
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jmoore99 HB User
Re: Need advice!

Thank you so much! I appreciate your kindness. I appreciate talking to someone who has been there. I need the encouragement! I am in the process of finding another dr. I am waiting what the neuro has to say, and have been asking around for someone who is willing to investigate with me. The answer "we don't know what it is, so here are some more drugs" is not acceptable to me! It is so difficult being young and looking totally healthy, I think the sympathy has run out. Luckily, I have a wondeful caring husband and great friends. But, they too are frustrated and it is nice to have an outlet. I am compiling a list of questions for the dr...thanks for the advice! Jen

 
Old 02-02-2010, 04:20 AM   #7
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Re: Need advice!

Jen, definately compile a list of questions, because you will forget to ask something if you dont. And, yes, I have been there. I too, was completely healthy when all this hit me a few years back....and even though I have a MS dx, I still think Im healthy overall. I travel, work, go to school (doctorate level) and have kids...nothing stops me. Although there are some "bad days' they good ones, outweigh them by far.

Also, keep a journal of whats going on with you....just a short list. The doctor wont read it, youll have to give it to him in the form of history. Things like "legs hurt/ numb/ weak" monday morning, by monday night, feeling better. Tuesday woke up with migrane which lasted until I had my second cup of coffee . Wed, eyes hurt, pain behind my eyes- kind of like headache, but felt different. Thursday, felt good. Friday was good all day until lunchtime and then felt dizzy/ weak....

This sort of journal- will show the doctor what random symtoms come and go- and if there is a pattern. It will also start to show you if there are triggers to what brings on the symtoms. You dont have to be deatiled, and if you have a good day, skip it- but certain symptoms MIGHT point to something other then MS....you want to focus on finding the reason for these things.

Youre in my thoughts, keep us posted!
Hugs
Nikki
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Old 02-03-2010, 07:29 PM   #8
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Re: Need advice!

Thank you thank you thank you! This is so encouraging. I am still just plugging away! I work long hours and am refusing to let this stop my life but it is so frustrating. I am person who goes 100 miles an hour and now I can only go 80 miles and hour and it drives me crazy. I will def make a log. It is so weird. I can have totally different symptoms on different days and at different times of the day. One thing for sure, when I sleep poorly I feel so much worse. I am so glad to have found this forum! It is hard for other people to relate so I love to hear from people who have been there and can give good advice! What are you going to school for? I am always curious. I did sit down with my husband and make a list of current symptoms, past symptoms and questions. I have my neuro appt in the am so I will update. Thanks for the advice on the MRI. I will ask tomorrow! Thanks for the encouragement.

 
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