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Old 11-09-2017, 06:05 PM #1
neurofears neurofears is offline
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Unhappy Hi, and new here and very scared

Hello to all,

This is my first day here and first post. I have read several posts and have seen most everything I am struggling with here, so I decided I would go ahead and post also. I have been a member of psych central for years but just came here today out of extreme fear. I have struggled with various problems for over 20 years, BUT i have an extreme medical phobia and have not been able to go to many doctor visits so I have ignored them the best I can. I did end up in an emergency room over 20 years ago and was diagnosed with pseudotumor cerebri and had to have fluid taken from my spine. I have since attributed most issues to either that or my weight and poor food choices. The problem for me is that it has again gotten to a point of extreme fear with some symptoms that I am afraid will have serious consequences if I don't find a way to get to a doctor. (and yes, I am really trying with the help of a therapist, but I have been trying for a year and so far I haven't had much success. We are trying again tomorrow or next week and I think that is what has pushed me to come here and find people that might understand).

I know you guys are not allowed to diagnosed or maybe even say what you think, I don't want to do or say anything that is against the rules and I will admit that I didn't read through all of them because one of the problems I am having right now is with vision and not reading or seeing things quite right. So if telling symptoms and asking what you guys think is wrong, please just let me know. I have seen others, but that doesn't mean it was right for them.

From my research and symptoms, I am really feeling that MS is highly likely for me. Every single symptom I have had has always gone in what I called 'cycles' because if I just wait it out, everything seems to either get a lot better or go away completely BUT either it returns or something very similar returns in weeks, months, or sometimes I will get years away form one thing (say it is the bottom of my feet numb and tingling and it lasts for a month and then is just gone, but in 3 months my hands start up and my feet are there but very slight now). That is an example, but not of my stuff acts in a sivilized manner, so I can't explain to anybody without sounding like a lunatic. I am going to list my problems and would love to know if you think I might be on the right track. One of my big problems is that if I do make it to a doctor, it is not something like most people where I can go and discuss a few things and then maybe go to somebody else next week until we figure out what things might be. I might only have one shot at making into a doctor and making it out alive (so to speak). So I really need to have some idea of what to say or ask if I manage to go to try to get the right things looked at fast. I know if it is MS that it will require an MRI for conformation, but if it is the psuedotumor back then it will take that and spinal taps and if it is Lupus (I was told that test came back positive during the psuedotumore time, but then a second test was negative..... grrrrr.... LOL). As you see, everything is so confusing. Let me put my mess here and see if you guys thing my MS thoughts might be justified.

My newest symptoms (which have happened a few times in the past 20 years but only for a time or two and never lasted long like they are now)
*frequent bladder urgency without successfully making it in time (for months now)
*VERY STRANGE pain below my right ribcage that is sometimes dull and then all of a sudden feels like somebody has a vicegrip pinching it ( I thought maybe gallbladder for a while but the pain will come and go and it seems more like it is in the ribs or something... I don't know) Again, comes and goes.
*vision problems with floaters, greying, and things just seem 'wrong' and I can't even explain it to myself really (vision problem is what led to my diagnosis of the other stuff 20 years ago, but it was a single one time event)

Now things that have gone on and off for over 20 years:
*numbness and tingling in hands, arms, feet, section of leg (these an happen together with each other, alternate, or only one at a time; but they all come and go over time.
*extreme fatigue (but I also have sleep apnea, so that could be that)
*weakness in hands and arms sometimes (usually only one side at a time when that happens and sometimes so bad it is hard to pick up a cup)
*extreme stiffness all over my body. I feel like I need to be oiled or something.
*I am almost always in pain somewhere and sometimes it is such strange pain that feels like it is deep inside a bone or muscle or something strange.
*mutlitple cognitive and depression problems, but could be life there.. LOL
*Occasionally I start having trouble with choking on my own saliva (sorry)
*Also, occasionally go through times where I just don't feel like my lungs are working and can get full of air. Like the muscles just can't inflate them enough and it hurts to try to breath deeply (not like pluerisy, cause that is there also)
*
I will stop there because that is enough, but not everything that goes on. Again, not sure what you are allowed to say but I would sure love to hear what you think or any suggestions if I am able to get myself into a doctor or hospital soon.

If you are down here, then thank you so much for taking the time to read this.
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Old 11-10-2017, 01:00 AM #2
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Hi neurofears

Welcome to NeuroTalk .

I don't know enough about MS to say much that is helpful but my understanding is that its diagnosis usually needs a careful neurological examination, often including MRI scans.

I am sure that other members will be able to offer you more detailed suggestions.

Best wishes.
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Old 11-10-2017, 07:00 AM #3
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Have you studied The McDonald Criteria?

"The McDonald Criteria was first established in 2001 by neurologist Ian McDonald and a team of researchers as a standard means of diagnosing multiple sclerosis (MS) with sensitivity and speed. (It is also known as the International Panel on MS Diagnosis, and the original and subsequent panels were, at least in part, organized by the National Multiple Sclerosis Society.)

The McDonald Criteria is distinguished by incorporating clinical evaluation with magnetic resonance imaging (MRI) scans in establishing MS."

Guidelines for MS diagnosis: McDonald Criteria - Multiple Sclerosis News Today
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Old 11-10-2017, 05:25 PM #4
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The symptoms you outlined are indeed very concerning. Without a neurological work up, it is impossible to identify if it is or is not multiple sclerosis.

So many neurological diseases have symptoms in common. The issues with your feet could be diabetes or multiple sclerosis.

Fatigue? It could be lupus or multiple sclerosis.

And all of this could be a different disease that I am unfamiliar with the symptoms.

As to your fear? You get to own that. You can either live by self diagnosis or you can attempt to get answers by going to a neurologist. Doctors are people who want to help. Some doctors are better than other doctors. Sometimes one has to go to more than one doctor and listen to what each has to say. Do not doctor shop in order to find a professional that will confirm what you want rather than practice good medicine.
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Old 11-12-2017, 01:10 AM #5
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Hello and welcome to the boards. As most have already said, neurological disorders, as well as auto-immune disorders are devilishly tricky to diagnosis, often times even with all the tests. Though I do understand for you it is a bit more daunting given your comfort level in visiting doctors. I wish I could say, well if you document well enough your symptoms, or ask just the 'right' questions, that it will speed up the process, however honestly, it simply won't. And more regrettably still, is it will likely take quite a few doctor appts to diagnosis something like MS or Lupus. It's simply not a one size fits all, and a quickee blood test to confirm that only comes back negative or positive... it's quite a few tests, and oft than not in the case of MS, it's a matter of ruling out everything else.

Now there are a few things, first and foremost is having symptoms that fit, from your list, I'd say there's enough to be suspicious of MS, but then there's enough to support Lupus, and a whole host of other potential health concerns from auto-immune disorders like Lupus, to central nervous system disorders like MS to peripheral nervous system disorders like Fibromyalga.

Depending on what your doctor thinks is the most likely- you may be sent for an MRI (is what I think would be the most likely only because you stated having a few common symptoms to the pseudotumor cerebri) IF, there is anything on the MRI that makes your doctor suspect, but not really able to confirm, then the next step would likely be a lumbar puncture to look for O-bands, and O-bands appearing in number to follow through with the McDonald Criteria. So that's already at least 3 visits, and this is assuming your doctor is fairly certain you may be on the right track in thinking it could be MS.

I'm not trying to concern you, or have you worried about needing to make frequent trips to the doctor, it's just simply not realistic to expect a one and done doctor's appointment for something of this nature.

Lupus is another, like many auto-immune diseases, that isn't a simple pulling a vial of blood and there's your answer... there are many different variants of the disorder and if I remember correctly from a friend of mine getting her diagnosis a few of them don't even show on the blood screens unless it's active, which active symptoms doesn't always mean active disease, she had a bit of a trial and error process with that.

The there's the PNS diseases, like Fibro. Another one that like auto-immune and even to some extent CNS diseases like MS, are troublesome to catch when the disease is 'inactive' but at the same time you can be experiencing all the symptoms, even though the disease is remitting or possibly even dormant. And for many PNS disorders and diseases the doctor will order an EMG, nerve conduction test and may have to repeat the test a few times before coming to a diagnosis.

About the only one and done, sort of, test is for diabetes. Fasting blood sugar rates have rather strict and readily readable numbers to say yeah or nay to, however even then for most people potentially receiving their first diagnosis, many doctors will still recommend an additional timed glucose test. Where they have you drink a reminiscent Tang substance and monitor your glucose levels over a 2 hour (I think it is) period. So even for that, it's a twice and done type deal.

Now that the pretty bad news is out of the way, firstly you are doing well by documenting as many possible symptoms you can think of as well roughly how long they persist and rates of recurrence over time. The better you're able to document things, the easier time the doctor will have in sorting out what may be the culprit rather than putting you through anything unnecessary. And if you can think of anything that may trigger any of the symptoms, every rainy day you get a headache or when it's hot outside your energy is just completely sapped away and you're snoozing by 4 pm after taking a nap at 1.... (exaggerated examples, but along those lines.) Would also assist your doctor in lining up the most probable suspects.

Though, I also wonder if you might have considered some kind of home health care, it may be possible, depending on your doctor and insurance and what's available in your area, to see the doctor in person once, let them do the whole squeeze this hand, lift this leg, follow the finger with your eyes... in the office... a single physical exam... and then do follow-ups over a video chat. And it may even be possible, depending on your anxiety level, to try the video chat first as sort of a consult. Talk with the doctor about your symptoms, about your medical history, and your concerns as to what it may be and the doctor may even be able to arrange for some of the testing to be done in your home by a nurse or visiting radiologist. An MRI would not be possible but they do have mobile CT scans, EMG's, blood draws, EKG's and even sleep studies, etc... that your doctor maybe able to order even without a physical examination.

And such things as those that may be possible to do without leaving your home, may help in reaching a proper diagnosis without causing too much undue stress to yourself and potentially aggravating an existing condition which may actually make it harder to detect.
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