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Undiagnosed Symptoms Community
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Avatar universal

Please help, no one will.

About 2 1/2 weeks ago I was leaving the grocery store when I suddenly started feeling sick to my stomach. At first I thought it was my sugar getting low since I had skipped lunch, especially when I started to shake, but when I started to speak I noticed I was stuttering very bad, and the tone of my voice had changed. My mother ended up meeting me at home, and I had talked to a friend of mine who had called the EMT's. By the time the EMT's arrived my legs were spasming , and one was spasming so bad that it locked up and I had to drag it to walk. They told me it could be anxiety since my vitals were good, and that although they could not tell me what to do, they did not think the ER would do much for me. I decided to stay home that night, and see if it was anxiety and it would pass. After day 3 came and I was still stuttering, with pain in the back of my head, and pain all over my body from muscle spasms I decided to call a doctor. Since I did not have a primary they could not see me without doing a new patient appt first, and they told me to go to the Urgent Care or ER. I tried to go to the Urgent Care but they refused to see me, and told me that I needed to go straight to the ER because they did not have a CT scan at the Urgent Care. So I went to the ER. When I arrived at the ER my blood pressure was a little high, but I am assuming my other vitals were pretty decent. I sat from 11 am until 11pm before they took me back and then did not leave the hospital until 12 am. When I was seen by the doctor my CT scan was normal, and my blood work was normal, he told me that my ear was compacted and maybe that was causing the stuttering, but other than that he had no idea why I was this way. He mentioned anxiety, like they did when I first came into the ER because apparently anyone who ever mentions that they have a history of anxiety they automatically get labeled. After I told them I had a history of anxiety I was immediately pushed to what they called their long list. So after waiting all day I was sent home still stuttering, still in pain, still muscle spasming, my husband had felt the back of my head and told me that the base of my skull and neck were extremely swollen. This is where a lot of the pain is, along with my back, and legs. I left the hospital with no answers, and two referrals, one to neurology, and one to an ENT doctor. I called the ENT they do not take referrals from the hospital, and the neurologist took a week to review my paper work so by the time I went in my stutter was gone. Oh and The day after the hospital I tried flushing my ear with debrox, and my ear syringe and cleared it out, but my stutter still remained, along with all the pain. So I went to neurology, and even though my stutter is gone, I still am having pains in the base of my head, and neck. I am still experiencing back spasms, and off and on tingling in my hands and feet. The same time this started I also started to noticed black specks in my vision, but only when i am looking at a white background. Like when I take a shower I see it when I am looking at the shower walls, or the white door. If I look at anything with color it disappears. I do not know if it is related but at this point I am desperate for any information to what this could be. I have had other strange symptoms happen to me the past few years. In 2012 there were two nights where I woke up in the middle of the night having intense, I mean scream worthy pain running through my legs and feet. I went to stand up and I just fell to the ground because the pain was so severe, or because my legs were weak, I am unsure but my husband had to carry me to the couch. The only way I was able to get through the pain was to prop my feet up, cross my ankles, and breath like I was in labor again. I tried to get a primary doctor but was not accepted. I am terrified to go to anyone without knowing anything about them. The neurologist appointment lasted 5 mins. I was referred to him by the ER. I brought my history in with me to the appt. He spent 5 minutes browsing through years worth of history, to come in check my reflexes, and eyes, and then told me nope not neurological. I do not know what is wrong with you. Then told me my tingling in my hands and feet was from anxiety. So here I am still experiencing head pain, luckily the stutter has gone away, but I am still having muscle spasms in my back with neck pain. I have also been experiencing a bruised feeling when I breath, it could be pain from the muscle spasms, but just in case this has something to do with it, and I have been extremely fatigued.  I would be so grateful if anyone could give me any idea as to what is going on with me.
5 Responses
1530171 tn?1448133193
Hi Steviebt.
I'm very sorry to read about all your suffering.

There are a few things that most doctors do not routinely check.
In many cases it is a numbers game: Too much cost for investigating
lesser possibilities; likely in your case.
Consider for example vitamin B12 methylocobalamin,  in which could be deficient or sub-clinically low.
Methylocobalamin is the neurological form of B12 and standard MMA tests do not necessarily detect a deficiency.
A CSF Homocyseine test with a repeat will usually help identify such a deficiency. (homocysteine levels fluctuate, thus the need for the repeat)
You see now the complexities.
My opinion is you do a trial of methylocobalamin for 3 months
and see if you improve.
A factor in low B12 is low Intrinsic Factor, due to inadequate gastric acid production. A low "normal' B12   result would be a red flag.
The N. American reference ranges for B12 are substantially lower than European and Japanese ranges and many people in the US and Canada
are suffering (Unnecessarily) with many neurological symptoms at what are considered here "normal" levels!
Another factor is low iron status related to diet, poor absorption or due to lack of enzymes etc. Again it could be sub-clinical.
Do you have a copy of your labs? If yes, can you post pertinent results
with reference ranges and units of measure, including vitamin D levels?

Ongoing biological and/or mental stress along with anxiety must be addressed as well.
On your own you could try meditation.
Your neurotransmitters could be dysregulated, as well as your adrenals.
This is a very complex field and you could be easily"written off"  labeled
as an anxiety patient and given some anxiety meds (shot in the dark) -end of story!

My opinion, see a reputable functional medicine doctor to guide through this maze.

Some people may suggest to rule out MS and Lymes, however these are very complex conditions to dx and consequently to treat, plus what I suggested above is fundamental  and much easier easier to rule out first.

Key words: Methylocobalamin-Iron status-gastric acid-enzymes-adrenal-
neurotransmitters.

Please note that my comments are not intended as a replacement for medicl advice.

Best wishes.
Niko



1530171 tn?1448133193
Oh, I forgot to mention that it might be a good idea to be checked for a
GNPTAB gene mutation, which predisposes one to stuttering and also
may contribute to disorders related to impaired metabolic function.
I have used 23andMe for genetic testing-they are the cheapest-but beware it is just the report you'll get and then it must be interpreted.
If you decide for this let me know and I'll dig out the name of another company which does the analysis.

Cheers!
Niko
Avatar universal
Niko, thank you so much for your response. I thought about a vitamin deficiency such as vitamin D, I know that it can cause a lot of strange things to happen to your body and can be very dangerous. I tend to skip meals, and when I do eat I know I am still probably not getting the nutrients and vitamins that I need. You have no idea how grateful I am for your response, and for the information you have provided me. I know all too well about being labeled with anxiety. I have been labeled ever since I was diagnosed in 2005. I spent two years suffering with pain, unable to eat without being sick, and unable to digest my food, before someone actually helped me. They just wrote me off as a problem patient who kept complaining about the same thing. One day I was placed with a doctor who decided to help me, and I will forever be grateful. She discovered that I had a hiatal hernia, and was experiencing extreme reflux. Ten days later they did a nissen fundoplication, and my body finally started working right. Even during the delivery of my last daughter, I was pushing when suddenly I got this intense pain, and no longer felt any contractions. They ignored me pleas, and told me to just keep pushing. When my baby's heart rate started dropping, and I was unable to push her out, they decided to do a C-section. After they went in for the c-section, they realized that the pain I was complaining about was not labor pain, but a ruptured uterus. I am use to being ignored, and pushed aside. I know that your information is not a replacement for going to the doctor but it is the only information that I have received. I know I sound like I am this person that goes to the doctor and complains about random things, but I never go to the doctor for anything, mainly because of my experience with doctors. Thank you so much for all of your help, you really have no idea how much you have helped. I am going to try and find an Osteopathic doctor in my area. I will also definitely look into the company you discussed to get that test done. Thank you again, and I wish you all the best. It takes a wonderful person to use their free time to respond to those who need answers. I am incredibly grateful.
Avatar universal
Would methylocobalamin that you can buy from the vitamin shop be sufficient? or would it have to be given by a doctor?
1 Comments
As long as it is methylocobalamin, it can be purchased at a drug or health food store.
1530171 tn?1448133193
Also sublingual drops work better, as it goes  in the blood stream vs passing through the digestive system and subject to
deterioration.
Try to become more proactive, by arming yourself with  knowledge and do not be afraid to exercise your rights as a patient. The medical/health system seems to be in total disarray
at present so in order to take care of ourselves we need to develop health intelligence & resilience.
I understand it is challenging when you have family with children,
a job and other responsibilities, however, without good health,
it becomes very challenging to manage all this.
Oh, you may want to do on your own a Betaine HCL challenge
or a baking soda "burp" test, for your gastric acid levels.
Just look them up online. Easy to do.
Blessings.
Niko
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