A long list of symptoms...

[ShakespeareMamaX]

27 January 08


1. Stabbing right eye pain, loss of vision in left eye, dizziness (23-27 jan 08)

2. In the summer, driving, lower half of face went numb for about 20 minutes, very dizzy...dehydrated feeling, stumbling upon leaving car (isolated)

3. Walking into doorways, desks, etc... (last few weeks or so)

4. Tripping, losing footing (on and off, few months)

5. Bad sense of visual judgement (i.e. looking out a window and hitting my face against the glass), on and off few months

5. Bad hearing and depth perception (phases in and out), years

6. Frequently going to the bathroom, losing bladder/bowel control (last 2 weeks)

7. Left arm numbness, almost constant (on and off, months. constant for past 2 weeks)

8. Bad memory (for as long as i can remember. haha... went to dr at 16 to point it out. he laughed and dismissed it)

9. Dropping things as I carry them, forget I was carrying something (past few years, on and off)

10. Confusion, forgetting words, spelling, etc... (frequently, last month or so)

11. Shaking (frequently, on and off for years)

12. Pain in legs (mostly left), hindering sleep, at times (past few weeks more, on and off for months)

13. Pain, stiffness in neck, muscle between right shoulder and neck, random(past few months, random)

14. Numbness, pain from mid-calf to mid-thigh on left leg (past week to date)

15. Heavy mood swings (years to date, mostly frequent)

16. Loss of sexual desire (most of the time), last year, maybe

17. Tired, tired, tired - nodding off everywhere (past 2 weeks)

18. History of migranes (CAT scan was done years ago. normal), 7 years ago

19. Slight right arm pain, tingling starting to set in, slowly (last week)

20. Have to look at stairs to walk up and down them. Disorientation or forgetfulness, miss first or last steps, bad judgement (last few months, random)

21. Flashes of light/visions, corners of eyes, random (past few years)

22. Color tints on white, mostly (random, since 13 or 14)

23. Pain when moving eyes, random (years to current. pain increasing)

24. Problems with posture (years to current)

25. "Lightning" feeling up my spine (car accident?), random past year or so

26. Random itchiness, no rash or sign of reason. most on left inside knee (past few years to current)

27. Nausea (past 2 months to current. more frequent, now)

28. Stuttering, random (past few years or so)

29. diagnosed with bipolar, depression, anxiety (14 y/o)

30. Sleeping disorders (as long as i can remember)

31. Bad circulation (hands and feet), hot/cold flashes (as long as i can remember)

32. Chest spasms (as long as i can remember, random)

33. Random diziness (past few months, random)

34. Blurry vision, random (past few years)

35. Ringing/blockage of ears (past few years)

36. Frequent urge to urinate, only a few drops (started today)

37. Eczema?

38. Numbness, tingling on tip of nose - somewhat frequent (past few years)

29 January 2008

38. "Poison" taste in mouth. Later, lost most taste in mouth. All food very bland (spicy, pb, watermelon sherbet, etc ...)



Any ideas?

 

[flutterbee]

You sound like my twin minus the facial numbness and bipolar (I have a hx of MDD). I'm still being worked up...have a cardiologist, neurologist and rheumatologist.

Make them listen to you. Print out this list and take it with you.

 

[timer lady]

It sounds like it's time for a thorough physical. Some of this can be stress related - a list this long though is pushing the "stress" diagnosis.

 

[SRL]

I agree evaluation by a neurologist and cardiologist is in order.

Make sure that an evaluation for Lyme Disease is included, and you might want to research it on your own. Here's a symptom list--note that not all that are affected show all symptoms.

https://web.archive.org/web/20100323194428/http://www.lyme.org/otherdis/ld_symptoms.html

 

[Josie]

I agree with getting yourself checked out thoroughly.

Didn't you used to have in your signature that you are wheat intolerant? If so, are you still avoiding wheat? What about gluten? There are people who have had terrible symptoms like some of yours from gluten. I know it sounds unlikely, but it is something you can do on your own while you wait to see the specialists.

If you think you might have Lyme Disease, I would get it ruled out by an LLMD (Lyme Literate MD) before giving up on that idea.

 

[Star*]

Check out metabolic syndrome X, Insulin resistance and diabetes. MommaX. Ins

Time to see the doctor.

 

[Sue C]

That is a long list. I have MS and many of the symptoms sound like MS....but not all of them. You need to see a neurologist for sure! And if you do not get satisfaction with one, go to a different one. It took me SIX years to get my diagnosis!! I was bounced back and forth between a neurologist and a cardiologist plus before that, my regular family doctor kept stringing me along and doing nothing!

I also have a seizure disorder which took about two years to be diagnosed. Again, I was bounced back and forth between a neurologist and cardiologist. It took having a seizure in front of my chiropractor and him calling my neurologist for the diagnosis to be made!! Can you imagine?

Hope you get some answers and relief soon.
sue

 

[LittleDudesMom]

I am adding to the list of posters who recommend going in and having a complete physical and further tests as your doctor recommends.

Sharon

 

[ShakespeareMamaX]

Well...I did print my symptoms up and how often and when they happened. The doctor was pretty concerned. He suggested Lyme Disease, Stroke (but unlikely), MS or Atypical Migraines (he seems to favor this one).

He had bloodwork done immediately for many things, including Lyme. He also did and EKG in the office, as my heartrate was a bit fast. Good news! My heart is A-OK. Just for fun, I had a pregnancy test done, as well. If I have to have certain treatments, I don't want to hurt an itty bitty in the process. Negative! Woo hoo! Now, he did also write me a referral for an MRI. He said if there are lesions, it needs to be looked into it more (MS, possibly...probably). If not, it will be assumed Atypical Migraines unless things change down the line. I think I may request another future MRI if my symptoms continue, though. He'd probably beat me to it. He's a fantastic doctor.

I've done enough research on MS to kill a buffalo. Hehe Actually, i was already looking into it, as when I mentioned the eye thing and the arm numbness she yelled out "MS!". I was like "why would you say that???" She didn't know. She barely even knew what it was. THAT freaked me out. My family has a history of "knowing" before the known, I guess you could say.

I know some of the symptoms don't fit. Eczema, for example, was just a lucky bonus at a fantastically coincidental time of physical foolishness. The stiffness in my muscle I kind of blame on the car accident, but I figured I'd throw it in, just in case. Poor posture? Probably from poor self esteem. Again, just thrown in.

I have a few questions and comments:

Sue C ~ That's an awful story. Shame on that doctor! Could you give me some of the syptoms you believe are and are not related? May I ask how you first became concerned with yourself?

fairlyoddparent: Yes, I did have the intolerance to wheat up there, but the cursed 500 character limit on the profile made me cut a lot of stuff out. I wouldn't have thought to connect the two, but I'll check out the info. Thanks!

To all the rest of you wonderful, helpful folk: Thank you for your advice. I will do research on all that was suggested. Good thing I love self educating and reading about creepy stuff that may destroy me. Hehe

I have come to terms that, whatever may be wrong with me, I can accept it (unless deadly! noooo) and believe it to even be a relief...and explanation to why all this random insanity keeps happening to me.

I don't wanna wear Depends at 26 but hey...at least I don't have to wait in line at the ladies' room, anymore.

Thanks, again. I really REALLY appreciate it. <3

P.S. Does anyone know what Atypical Migraines are, axactly? I did a quick search on them, but couldn't find much...

 

[flutterbee]

Honestly, with everything you have going on, I'd want a referral to a neurologist. I'm assuming the doctor you are talking about is your primary care doctor. He may be wonderful - and he certainly sounds like it - but he doesn't have the specialized training it sounds like you could benefit from. There are all kinds of neurological disorders that could be causing the symptoms you're having besides MS, such as neuropathy, etc. Even with the Atypical Migraine diagnosis, I'd still want a neuro involved.

FWIW, if the MRI is to look for MS, make sure it specifies to use contrast. You can have an MRI with or without contrast, but to look for MS you need contrast. Also, according to the MS society website, an MRI can rule in MS, but it cannot rule it out. Just another reason I think you should have a full neurological workup.

Also, the Lyme test is pretty well known to throw out false negatives.

Yeah, I've been doing some research, too.

 

[Josie]

According to the Lyme boards I am reading, the Lyme test to get is from IGeneX labs. They do only Lyme testing. They do have a higher positive rate than the local labs. The Lyme patients say that is because they are the most accurate. Most regular doctors say it is because they have a high false positive rate. Lyme Disease and treatment are a very controversial topic in the medical community. It would be worth checking out on your own to see which side you want to pick for your own care.

Here is another link with a self screening test for Lyme Disease. Click on symptoms on the left and then scroll down. www.canlyme.com

ETA: If you do the IGeneX testing, you might have to order the test kit online and then take it to the doctor to get him to order the actual test.

 

[ShakespeareMamaX]

Quick update...

Passed out in my car yesterday in my job parking lot for an hour while having a cig. I woke up choking on my own spit and my right arm was shaking like crazy. i called my doctor and was ruched to the hospital. Of course, the hospital finds nothing wrong and blames it me saying I need to take my pills everyday as directed (of COURSE I do!!!! grrr). They did do a CAT scan. Surprise! No tumors... I went to get the MRI done today. They said it'll be 24-48 hours before any results. My doctor's not in today. I can't drive. I keep falling asleep. I fell asleep in the darn bathtub tonight!!! Woke up nearly an hour later when my husband walked in. I didn't even get to clean myself. *sniff* I'm a dirty girl!! D: Also, a few days ago I got a horrible tremor in my left arm which progressed to the entire left side of my body to start shaking. Mind you, again, I was in my car and had to drive my kids home. I keep nodding out. At work, in the car... I'm scared... I refuse to drive at all now. I was limpy today. My left arm is still bothering me. Vision goes a little blurry now and then, but only hazy. Not the "wax paper" vision I had the first time.

*sigh* What does this insano tiredness mean? I was able to finally get a full night's sleep (and then some) and I was still exhausted when I woke up this morning. I almost fell asleep in the waiting room at the doctor's office, in the car, when I went to lunch and, of course...the bathtub.

Well...it looks like Michael Jackson's thriller is on... Better go watch it.

I'm crossing my fingers my MRI results get to my dr soon. I'll be calling him first thing in the morning...

 

[tiredmommy]

Have you checked into Parkinson's?

 

[ShakespeareMamaX]

hmm....no. i'll do that right now

 

[ShakespeareMamaX]

ick...sounds scary. i'll try to get everything out of my mind that i just read. scaryyyy!!! always a possibility, though. knowledge is power, i suppose. thanks, tiredmommy! it's def something i can bring up to the doctor to look into if he doesn't find anything. <:}

 

[ShakespeareMamaX]

Alright, everyone. Got my MRI results, today. I have white spots on the brain...and that doesn't mean I'm just thinking about them.

 

[ShakespeareMamaX]

Oh, one more new symptom:

Random body pain. Thurs and Fri (especially Fri) I had the most excrutiating and debilitating pain EVER in my legs. I had to instruct my 8 y/o on how to cook breakfast for his sister and himself. Surprisingly, the eggs he cooked looked delicious. I had to sit the entire time, though. Not, that it helped, but at least it prevented me from falling.

It's tough... On a lighter note, I did take out sickness insurance a long time ago. I'll get my entire pay for 40 hours a week while I'm out of work. It only lasts for 6 months, but I'm crossing my fingers I'm not out that long. I'd go mad.

Please, excuse my spelling and grammar. It's an Obsessive Compulsive Disorder (OCD) (if I didn't mention that before). If you guys could do me a favor...edit my writings? Please correct my mistakes. Tell me. I have to look up everything on webster.com for simple words like audiance...audience? Ehhh...still don't have it down. I've corrected people all my life. Now, it's everyone else's turn.

 

[flutterbee]

So, when's your neuro appointment?

 

[LittleDudesMom]

So you got the mri results, they said you had white spots on your brain and......did they say anything else, schedule a neuro appointment or a follow up with your doctor?

I'm not going to venture any guesses as to what is going on, but I do want to let you know that you will be in my thoughts and prayers. It must be incredibly scary to drop off like that, not to mention the other symptoms you are having. Hugs.

Sharon

 

[SRL]

The white small matter that shows up on MRI's can be from any number of things, including something as simple as silent migraines, so it's really important that a neurologist follow up and not just a primary care physician. Are you scheduled for an appointment soon? Have you asked to be put on the neuro's cancellation list--I always think it's worth talking to the nurse when symptoms are increasing to see if you can get an appointment moved up.

If you're feeling limpy and worried about falling, you might want to get a walking stick (like hikers use). I have a friend with balance problems who uses one when she goes out as well as around the house when she needs it. It would also be a good idea to keep your cell phone with you even with you're home.

Hang in there and don't worry about the spelling. I understand--and we'll tidy up anything if that would help you out right now.

SRL