Discussions By Condition: I cannot get a diagnosis.

Tingle, vision changes, blackouts, weakness strange symptoms, they think I'm crazy...

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: angel1namae
  • May 9, 2010
  • 04:05 PM

Wow this is a long story. Hope you can help and thanks for reading. Most of my symptoms started in the fall 09. Felt like someone was pouring hot water in my veins down my arms. Sometimes painful, including chest pains. ED says no heart attack (ya, went there two times for same/similar symptoms). Put on Prilosec for reflux, thats what my PCP thought. Had weird sensation one night felt like one side of face was on fire and circled to other side of face in a spiral motion. Still all these same symptoms as the new year started.

Switched to the 24hr new prilosec. Began to have vision changes felt like contacts dirty or when you are driving for a long while and your eyes start to change. Got up off the couch one night and vision went black for few seconds. Continued to have strange visioin changes, saw eye doc no problems there. Then at work had weird sensation of hair raising pins and needles over scalp with vision changes. This would come and go a few times a day or skip days. Some so scarry I left work and went to ED, again nothing wrong. All this is really hard to describe and my doctors think I am stressed/anxiety.

Symptoms got so strange that I had to take a leave from work. I had an MRI spine/brain. Lots sof labs and still nothing.

During all of this my PCP did some labs had a video swallow study in fall, (difficulty swallowing) thyroid scan all normal.

After last ED/inpatient visit where I did cry becasue my legs where weak the numbness had spread the hospital finally admited me. I think because they felt sorry for me. All test and labs came back normal. No MS...I was refered to a nurologist.

He ordered an EMG (normal) EEG (normal). This time my labs came back a little off. B12 was 266 and WBC was 3.2. Ok so he told me might be a b12 problem and neuro symptoms would never go away. But he was not sure if the B12 was the cause. Just take B12 he told me.... Ok now what.

My PCP with this info was not concerned. I am a nurse and I was... So gave her this info asked what my B12 was back in Feb when she tested it. She sad 222, hmm I thought lower.... She said it is in normal range, then she read a paragraph at the end of the lab page that said "normal lab value but if patient has symptoms then treat". Ok so after 7 months she now agrees.

Went to see a hemotologist he ran same test. All normal. B12 945, but I had been taking double dose of sublinguals prior to all his tests. He said not sure...

So long story with lots more details left out. I am just so frustrated with these symptoms. Some are still strange/scary.

Been on b12 for over a month. Now for the past two weeks I have been dizzy. I am more dizzy when I am at work. My head feels like it is lightheaded. My vision does not spin. I feel spacy at times. The more tired at work I get the worse the symptoms. Today I had a symptom that the blood left my head, best way to describe it. All most the feeling like when you get an adrenaline rush. Head/scalp still tingles on and off. At times feels like my brain, at least the outer surface is on fire.

Now I know what you are thinking, crazy. I am an RN, life is good, no stress or anxiety. I am just done with all these crazy symptoms and what to solve them. I thought B12 was it but now I am not sure. I even thought that the Prilosec was making me have seizures (still think that).

Any advice?

Thanks

Never had strange symptoms. Rather healthy. 34years old hypothyroid (treated and test normal during all of this). People listen to me then I feel as if I ge tblown off. I know my body and something is not right.

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  • Wow this is a long story. Hope you can help and thanks for reading. Most of my symptoms started in the fall 09. Felt like someone was pouring hot water in my veins down my arms. Sometimes painful, including chest pains. ED says no heart attack (ya, went there two times for same/similar symptoms). Put on Prilosec for reflux, thats what my PCP thought. Had weird sensation one night felt like one side of face was on fire and circled to other side of face in a spiral motion. Still all these same symptoms as the new year started. Switched to the 24hr new prilosec. Began to have vision changes felt like contacts dirty or when you are driving for a long while and your eyes start to change. Got up off the couch one night and vision went black for few seconds. Continued to have strange visioin changes, saw eye doc no problems there. Then at work had weird sensation of hair raising pins and needles over scalp with vision changes. This would come and go a few times a day or skip days. Some so scarry I left work and went to ED, again nothing wrong. All this is really hard to describe and my doctors think I am stressed/anxiety. Symptoms got so strange that I had to take a leave from work. I had an MRI spine/brain. Lots sof labs and still nothing. During all of this my PCP did some labs had a video swallow study in fall, (difficulty swallowing) thyroid scan all normal. After last ED/inpatient visit where I did cry becasue my legs where weak the numbness had spread the hospital finally admited me. I think because they felt sorry for me. All test and labs came back normal. No MS...I was refered to a nurologist. He ordered an EMG (normal) EEG (normal). This time my labs came back a little off. B12 was 266 and WBC was 3.2. Ok so he told me might be a b12 problem and neuro symptoms would never go away. But he was not sure if the B12 was the cause. Just take B12 he told me.... Ok now what. My PCP with this info was not concerned. I am a nurse and I was... So gave her this info asked what my B12 was back in Feb when she tested it. She sad 222, hmm I thought lower.... She said it is in normal range, then she read a paragraph at the end of the lab page that said "normal lab value but if patient has symptoms then treat". Ok so after 7 months she now agrees. Went to see a hemotologist he ran same test. All normal. B12 945, but I had been taking double dose of sublinguals prior to all his tests. He said not sure... So long story with lots more details left out. I am just so frustrated with these symptoms. Some are still strange/scary. Been on b12 for over a month. Now for the past two weeks I have been dizzy. I am more dizzy when I am at work. My head feels like it is lightheaded. My vision does not spin. I feel spacy at times. The more tired at work I get the worse the symptoms. Today I had a symptom that the blood left my head, best way to describe it. All most the feeling like when you get an adrenaline rush. Head/scalp still tingles on and off. At times feels like my brain, at least the outer surface is on fire. Now I know what you are thinking, crazy. I am an RN, life is good, no stress or anxiety. I am just done with all these crazy symptoms and what to solve them. I thought B12 was it but now I am not sure. I even thought that the Prilosec was making me have seizures (still think that). Any advice? Thanks Never had strange symptoms. Rather healthy. 34years old hypothyroid (treated and test normal during all of this). People listen to me then I feel as if I ge tblown off. I know my body and something is not right. I dont really know why im thinking this but I keep thinking it may be something wrong with your neck (maybe cause i had some similar symptoms with tingly scalp but in my case it one sided and it turned out to be being caused by my neck..this neck issue made me dizzy, spacy and affected my sight at times and gave me other symptoms too).. i suggest to see a chiropractor to rule out some neck issue as cause.. Also as everyone is different at times thyriod med supplementation as what was natural range for one may not be for another.. so occassionally isnt enough in some.. i dont know fully thou what symptoms low thyriod can get, if that would explain your symptoms still. im have no idea why you havent changed your med to another one for your reflux if you think that is giving you some issues. Sounds like you should do so. Best luck
    taniaaust1 2267 Replies Flag this Response
  • Wow this is a long story. Hope you can help and thanks for reading. Most of my symptoms started in the fall 09. Felt like someone was pouring hot water in my veins down my arms. Sometimes painful, including chest pains. ED says no heart attack (ya, went there two times for same/similar symptoms). Put on Prilosec for reflux, thats what my PCP thought. Had weird sensation one night felt like one side of face was on fire and circled to other side of face in a spiral motion. Still all these same symptoms as the new year started. Switched to the 24hr new prilosec. Began to have vision changes felt like contacts dirty or when you are driving for a long while and your eyes start to change. Got up off the couch one night and vision went black for few seconds. Continued to have strange visioin changes, saw eye doc no problems there. Then at work had weird sensation of hair raising pins and needles over scalp with vision changes. This would come and go a few times a day or skip days. Some so scarry I left work and went to ED, again nothing wrong. All this is really hard to describe and my doctors think I am stressed/anxiety. Symptoms got so strange that I had to take a leave from work. I had an MRI spine/brain. Lots sof labs and still nothing. During all of this my PCP did some labs had a video swallow study in fall, (difficulty swallowing) thyroid scan all normal. After last ED/inpatient visit where I did cry becasue my legs where weak the numbness had spread the hospital finally admited me. I think because they felt sorry for me. All test and labs came back normal. No MS...I was refered to a nurologist. He ordered an EMG (normal) EEG (normal). This time my labs came back a little off. B12 was 266 and WBC was 3.2. Ok so he told me might be a b12 problem and neuro symptoms would never go away. But he was not sure if the B12 was the cause. Just take B12 he told me.... Ok now what. My PCP with this info was not concerned. I am a nurse and I was... So gave her this info asked what my B12 was back in Feb when she tested it. She sad 222, hmm I thought lower.... She said it is in normal range, then she read a paragraph at the end of the lab page that said "normal lab value but if patient has symptoms then treat". Ok so after 7 months she now agrees. Went to see a hemotologist he ran same test. All normal. B12 945, but I had been taking double dose of sublinguals prior to all his tests. He said not sure... So long story with lots more details left out. I am just so frustrated with these symptoms. Some are still strange/scary. Been on b12 for over a month. Now for the past two weeks I have been dizzy. I am more dizzy when I am at work. My head feels like it is lightheaded. My vision does not spin. I feel spacy at times. The more tired at work I get the worse the symptoms. Today I had a symptom that the blood left my head, best way to describe it. All most the feeling like when you get an adrenaline rush. Head/scalp still tingles on and off. At times feels like my brain, at least the outer surface is on fire. Now I know what you are thinking, crazy. I am an RN, life is good, no stress or anxiety. I am just done with all these crazy symptoms and what to solve them. I thought B12 was it but now I am not sure. I even thought that the Prilosec was making me have seizures (still think that). Any advice? Thanks Never had strange symptoms. Rather healthy. 34years old hypothyroid (treated and test normal during all of this). People listen to me then I feel as if I ge tblown off. I know my body and something is not right.You're not crazy! I have been having similar problems. Mine started after receiving nerve blocks for migraines on jan 5, 2011. Felt a little motion sickness after and thought nothing of it, next morning getting ready for shower and room went black and spun out of control, lost balance, and left side more effected. Neurologist sent for MRI, nothing, gave me multiple meds that do nothing. Have had 2 MRIs, 1 MRA, 1 EEG, EKG, Blood work etc.. all fairly normal. Do also have a low b12 of 236. according to doc under 550 is now considered low. My vision has changed, twice going black in left eye, but often it is like someone has smeared grease on my left side of my glasses. I have tingling in my left hand occ. going to elbow. I almost always have the feeling of adrenaline rush going through my body with most movement followed be extreme weakness and dizziness. I have been in bed most of the time since this has begun. I tend to fall to my left side. I also almost always have a headache and nausea. Doctors tend to say it is some sort of migraine, IT HAS BEEN A MONTH!! I think everyone thinks I am crazy too. Last night my mother suggested it is probably psychosomatic... thanks.... The symptoms are strange and massive, too many to list, and the frustration is horrible. Please any help will be greatly appreciated.
    Anonymous 42789 Replies
    • January 30, 2011
    • 06:53 PM
    • 0
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