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nausea, joint and muscle aches, light sensitivity, dizziness, cold hand...
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nausea, joint and muscle aches, light sensitivity, dizziness, cold hands/feet, weakness, exhaustion

I am a 26 y-o- Female. For the past 3 months now I have been having strange symptoms like nausea, dizziness (extreme at times), headache behind the eye and sensitivity to light, joint/muscle aches and stiffness mostly in hands and feet but occassionally like a full body flu-type attack, weakness in wrists, cold feet and hands that feel like they are plunged in ice water whenever I take a hot bath/shower, constant feeling of cold so that I just can't get warm, occasional hot flashes and chills, exhaustion and sleepiness all day but hard to stay asleep, and memory problems/disorientation like a brain "fog", flashes and shadows out of the corner of my eyes, and some other symptoms not listed. I have a history of Graves Disease diagnosed at 12 years old and treated for several years with PTU. I had a relapse at the age of 18 and had radioactive ablation of the thyroid done. I have recently seen a rhuematologist due to a slightly elevated RH factor (14) and he drew more labs to detect Lupus and other autoimmune connective tissue disorders, all of which came out negative or normal including the CCP test for rheumatoid arthritis. Though my TSH levels have been hard to keep stable (recently miscarried at 8 weeks with a TSH of 40), this last test was normal (Currently taking thyroxin 100 mcgs and Cytomel 10 mcgs) including antibody and FT4 and FT3 levels. Blood count and lIver tests were also normal. Xrays of hands and chest were normal. Opthamologist visit reported normal eyes except for slight dryness. Other than these, I have a history of repeated low vit D levels, atypical PCOS as determined by cystic ovaries on ultrasound and borderline insulin resistence, but no androgenic factors. I go to neurology in a month's time and also back to rheumatology. I know there are autoimmune disorders of the nervous system that can cause some of these symptoms, but I have not noticed numbness or nerve-like pains or extreme muscle weakness that seem to be found in most of them. I know it is possible that I have the early stages of rhuematoid arthritis as I do have a family history of it, but some of these symptoms don't seem to fit. Any ideas about what could be going on with me and further testing I need to pursue? Thank you.
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620923_tn?1393294254
HI...u mentioned u have low levels of vit D...how r ur other levels...B12...magnessium...potassium....ect....???As I was reading this , I was thinking thyroid, and then u confirmed that.....
...did they also check u for lymes?


Good luck
Godspeed
"selma"
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472250_tn?1224779202
I some of the very same symptoms and have tested negative for just about every test under the sun...
Except a recent lumbar puncture revealed a positive test for the antibody GQ1b - You may need to reseach and ask your doctor.  The way you describe a lot of your symptoms is erely similar to my case.  
I did also show peripheal neuropathy on an EMG/NCV nerve test.
Check out CIDP -
Also I like the website www.wrongdiagnosis.com  It will give you examples of different diagnosis for similiar symptoms.

Good Luck
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Avatar_n_tn
Thank you for your responses!

As an update: I have continued to experience the above symptoms on and off. I did have a UTI (I get them a lot!) back in Dec around the time of my post that was treated with antibiotics. Also, had high blood pressure 135 over 100 at the same time and slightly abnormal EKG at that time, but have done testing since then and heart is ok except for tachycardia, which I have had since my Graves, despite treatment. Dr. feels that blood pressure was a response to pain/stress and that it caused the abnormal EKG (stress test was normal). Rheum labs continue to be normal except for the slightly elevated RH factor (15).  Thyroid TSH was a little low now (4.2) but still within normal limits (it fluctuates constantly!). They did find elevated thyroid peroxidase antibody (96) and then most recently (54), so there is still some thyroid antibody stuff going on. I wont see endo for another month.

Neurology seems to think I am having migraines, pending the MRI, and prescribed noranatriptolyne, which makes me way too tired. I am scheduled for an MRI on Feb 7. The migraine thing doesnt sound right to me since sometimes I will have these symptoms for weeks--week-long migraines? Rhuem says I may have Reynolds syndrome causing the pain in hands/feet and the cold feelings. Gave me med basically blood pressure meds, which helped the cold in my hands and feet and some of the pain, but still achy. Seems every specialist has their own opinion about what's going on!

I also get terrible pelvic/abdominal cramping much worse around menstrual cycles, but not only at that time. Have been told as a teen I had IBS but never had tests run other than that. Going to GYN to see if they can find something, but if not, may need to speak to GI dr.      

SelmaS, My Vit D this time around was normal. My other Vit/electrolytes were also normal. Don't think I have been checked for lyme's disease. My dog does bring in ticks from outside every now and then but I havent noticed any bites from them.

VoncentVols, I have not had a lumbar puncture. Neurology was a bit dismissive, saying he felt it was migraines and the rest were related to the thyroid (though my levels have been normal since Oct.). Did they see anything for you on MRI scan? The only new nerve-like symptoms I have been having is a sort of numbness/buzzing feeling on my lips and sometimes tongue. But it is only occasional. What were your symptoms like?
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620923_tn?1393294254
I am glad to see ur update....also that u r grtting an MRI...may I suggest if u have not thought about it...request at the time of the MRI study to get a copy of the MRI and the report.

Please keep us posted on how u r doing!!
Godspeed
"selma"
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534785_tn?1329595808
I was going to guess a combination of thyroid disease and migraines, so I think your neurologist is on the right track! Migraines can be for extended periods of time if untreated, or even turn into "daily headaches"--this happened to me and I thought it was strange that I had a headache more often than the times I didn't have a headache. Tingling sensations on one or both sides of your face, in addition to numbness, can also be a symptom of migraines, or even thyroid eye disease. Have you ever been tested for allergies of any sort? I'd also be interested in hearing if there are any abnormalities on the MRI.
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Avatar_n_tn
has anyone mentioned porphyria yet? My niece is currently being tested for this disorder which can produce alot of symptoms . Just an idea... Good luck
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Avatar_f_tn
a lot of symptoms you discribe sound very similar to what my son has gone through, he was finally (after 4 months of terrrible worry) with having POTS. since this condition often piggy backs on other conditions, and is most common in women, you may want to ask a neurologist or cardioligist about it.  pots is a circulatory problem, so there are many symptoms that  seem unrelated. POTS = postural orthostatic tachycardia syndrome...in a nut shell sufferers blood vessels do not help the heart work against gravity so heart rate goes up 30 points or more within 10 minutes of standing from a seated position. my son's heart rate goes up 30 points within the first minute and climbs from there for about ten minutes. his symptoms are similar, but not exactly like yours, but thats another thing about pots it affects people differently, depends on wich body system isn't recieving blood flow as it should, i do know that hot showers and baths are a no no for anyone with this condition, because heat expands the blood vessels even further and your heart has to work even harder.  heat brings on flu like symptoms in my son.
i hope this helps at least give you something to consider ...God bless.
mom_of_pots
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623944_tn?1244039090
You mentioned dry eyes, that could be an early symptom of Srogren's Syndrome - another autoimmune disorder. It can also cause a lot of your symptoms. And if you have an autoimmune disorder of your thyroid, you can develop other AI conditions....
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Avatar_n_tn
I believe my rhuem checked autoimmune antibodies for Srogren's Syndrome and it came out negative. I have never heard of POTS before. How did they dx it? Also, I have never heard of porphyria, but as far as I could tell, it is a hereditary type of thing and I have never heard of this in my family...

I did try the Maxalt for the 'migraine' headaches and saw no improvement. I think neuro sort of looked at me, at my age, and my thyroid problems (which he seemed to feel the main culprit), then heard that my father gets migraines and sort of lumped it all together given that migraines run in families.

I have been feeling terrible lately, hope drs figure it out sometime soon, though I must admit I'm jaded about that. When I first got Graves it took them a year to figure it out (blamed it on puberty, being female, the its all in my head treatment, you know how it goes) and even when I had my relapse years later, took me about that long to convince someone there was something wrong with me enough to even draw the right labs, even tho both times my symptoms (and disease activity) were severe! This seems to happen to me a lot, especially if my particular history and symptoms don't follow the expected textbook trajectory. *sigh*

An odd new thing that has been happening this month is periodic breakouts of mouth sores. They don't really hurt. I have one now, but its very small, under the tongue. A coupple weeks ago I had three at one time, on my lips and inner cheek. I have had what I call 'canker sores' throughout my life (thought these were related to spicy or super sweet foods), but these bumps/swellings are not really painful.

GYN scheduled an ultrasound at the end of the month to check for anything out of the ordinary that could be causing the pain. I know 1 in 4 women get endometriosis, and my aunt had it so bad, she had a hysterectomy, so I suppose it could be something like that, but I think they have to do a laparoscopy to check. Probably not related to my other problems? I am scheduled for an MRI at the end of the week, so hopefully that clears up some possibilities.

If fribromyalgia is the cause, I am not sure who would dx it, but will keep an open mind about that possibility.

One other thing is that I do have a freckle (dark spot) on my left eye which may be getting bigger. I have an appt with opthamology next week, but at the appt I had back in Oct they said my eyes were ok, but to keep an eye on that spot. Others have also noticed that it appears to be growing. I will discuss this with them, but am aware that this sort of thing could be a melanoma in the eye like what people get on the skin. However, I'm not convinced this could be causing any of my symptoms, just something worth mentioning.

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Avatar_n_tn
UPDATE:

Hi everyone. So my MRI was normal. After seeing opthamology, the dr. reported that I had intraocular (something) dryness and some mild exophthalmos in my left eye. It is not really noticable without measurement. Also, my contact prescription needs to be much higher with astigmatism power. Dr. said dry eyes, light sensativity, and headaches, double vision can be associated with Graves Disease eye problems. I had punctal plugs placed in the eyelid to keep moisture from draining, and it has helped somewhat. When I saw rheumatology this last time, they diagnosed mixed connective tissue disease with features of rheumatoid arthritis and sjoren's (they seem to feel the dry eyes is related to this more than any exophthalmos since it is so mild, as I also have dryness in other areas), and also possible lupus features. I did have a rash on both arms that they said looks like the scarring of vasculitis. I also do have Reynaud's. I am now on hydrochloroquine and a calcium channel blocker for when i need it for the Reynauds, which is pretty painful especially in the cold. Endo pretty much said they couldn't do much about the thyroid problems and that if there is any living cells left in the thyroid, the antibodies will eventually destroy them anyway. Basically surgery or radiation of the thyroid wouldn't help get rid of the antibodies. They would still be there. So... I am assuming a lot of this has to do with rhuem's dx and the eye stuff, though not 100% sure about the dizziness in relation to all of this, but I suppose its possible. They are keeping an eye on the eye nevus (eye mole discoloration) also. The other thing is that I have a pelvic ultrasound scheduled on monday. They have recently just drawn labs to check for lyme's and hepatitis and a few other things. I'll let you know if there are any changes based on those. Thanks for all your help and concern!
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Avatar_n_tn
Hi there,

   I have the same exact problem metioned by u and the worst part is doctors are not able to diagonise wht the problem is only difference is i dont think i have any problem with thyroid but i have pcos(weight gain and facial hair),ibs,once diagsd with lupus which looks like normal now  with the recent test which is surprising!! muscle aches around the joints and itchy in summer,excess sweating in summer,hair thining,vaginal itching but no discharge or odour, painful legs,headache,memory problem started recently,freckles, very sleepy in the day time but can hardly sleep in the night,dizziness. I am 26 too and all this started when i was 22 years.I am sick and tired of all this.i am married and we are planning for a kid and nothings working out. I am also worried where all this problems wld get passed on to our kids.I also suffer from low BP. I was on ayurvedic medicien for a year and tht did make me feel very relived and lively.I have also lost all the charm on my face after this problems started. alopathy med does not work well i guess coz of my experience.I have gone through all the tests tht u hav gone through but everything seems to be alright.Now i found something on the system tht was IODINE defeciency can also cause all this problems so i am planning to have a check on this since iodine is very essential for our body and i wld suggest u the same thing give a try and hope u get a result and ther is something called cushing syndrome which has same symptoms but looks like its rare but u never know.I hav got an appnt to see a doc on oct 2009 which is too far in future so cant wait. only thing i do is sit and cry for each and everything i have become so very emotional and my husband gets irritated sometime but fails to understand.Hope i get to know wht is causing all this problems soon. bye and reply if u can.

regards
silvie
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Avatar_n_tn
You should ask your gyno about IC  interstitial cystitis, check it out on google for symptoms..I have it and usually misdiagnosed as constant UTI symptoms also bad pains around menstrual time..you have to follow a certain diet and take medications if it is it.. I found this because I am having alot of the same symptoms as you as far as vision and joint/muscle pain.   Which alot of people that have IC have fibromyalgia..good luck
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