First time and hoping for advice on information for a doctor

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First time and hoping for advice on information for a doctor

Postby iamhiding » Sun Nov 12, 2017 5:37 pm

Good evening all,

This is the first time I have signed up or posted to an MS site. I have suspected I might have MS for over 20 years, but I do for sure have PTSD with and EXTREME medical phobia, so for the most part; I have tolerated and ignored my issues if I couldn't find my own natural help. Also, the few times in the beginning when I got scared enough to try to get help for something going on, by the time I could it was pretty much over and gone and then I just look crazy saying that I swear this stuff keeps happening. Since i comes and goes so much, I very often wonder if it is just all in my mind myself. I have had a few new things start up over the last year and have also been working with a therapist on some of the PTSD and we have been working on trying to get where I can go to a doctor. Because I am already in both poor physical and mental health going in (it is almost impossible for me to even speak when getting close to the environment), I have been trying to put together a 'life list' to give the doctor. Now that I have it written (well, as best as I can remember things), I am afraid a doctor is going to look at it and my PTSD and say I am also a hypochondriac. A little hard to go with since I don't seek medical care though..LOL..

Sooo, my thoughts were to come to someplace where people understand that symptoms and how crazy they are and hopefully even how others don't believe you because one day or week it's horrible and the next it's fine and then later complaining about something new or the same old one over again..... sigh.... Buuuut, what I was saying was that I had hoped there might be a couple people willing to look at what I wrote for the doctor to see if you think it is good or if it does look crazy or if you suggest a better way to do things. I might only have one shot at getting into a doctor, because I don't know how this will go and if I will be able to make the follow-up visits needed; so I am away that I might simply not be able to get any answers, but I thought if I went in with as clear and helpful information as I could then maybe there would be a chance.

Also, I am not even sure this is allowed on this forum, so I will not paste the letter unless somebody is ok with looking at it. I appreciate your reading up to this part and just let me know if I can and/or should attach it.

Thanks :roll:
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Re: First time and hoping for advice on information for a do

Postby jimmylegs » Mon Nov 13, 2017 5:36 am

hi feel free to paste for review/comment. there's been some related chat here on the forum in the past so one of us may be able to provide relevant links also.

not that what i want matters, but aside from symptoms experienced, i'm interested in what's been offered for day to day treatment to date, specifically the natural help you mention, and also re the ptsd.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
User avatar
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Re: First time and hoping for advice on information for a do

Postby Snoopy » Mon Nov 13, 2017 5:50 am

Hi iamhiding,

Multiple Sclerosis has a diagnostic criteria (The Revised McDonald Criteria). Part of the diagnostic criteria requires all other possible causes for a person's symptoms need to be ruled out. There is no symptom exclusive to MS, many other conditions, some medications, vitamin/mineral deficiencies and mental health disorders can cause symptoms similar to MS.

Unfortunately, there will be multiple tests which includes multiple Dr. visits. I know this isn't what you wanted to hear but it's best if you understand what is required. Most Therapists will go to Dr. appointments with their clients but it is charged like your appointment.

Information on diagnosing MS:
https://www.nationalmssociety.org/Sympt ... gnosing-MS

Some of the other conditions that can cause symptoms of MS:
https://www.nationalmssociety.org/Sympt ... o-Rule-Out
https://www.everydayhealth.com/multiple ... sclerosis/
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Re: First time and hoping for advice on information for a do

Postby iamhiding » Mon Nov 13, 2017 11:30 am

Thank you so much Jimmylegs and Snoopy,

I will post the doctor information here and then go back and reply to your posts because I can't seem to read your posts at the same time I am writing this unless I do the quote thing. LOL.. I am not terribly familiar with the functioning of these boards ;)

I looked and don't see where I can attach the form, so I will copy and paste it here. It does look crazy, but I wanted to make sure I was as clear as possible in trying to explain how crazy these problems have been for the last 20 years. Forgive if it is to much and PLEASE provide any advice for a better way to do it if you think there is one.

Bellow is the copy/paste of the paper. Again, thank you so much for any advice you can provide and yes, your opinion is more then good enough for me!! :mrgreen:


*********************************************************************************************************

All of the following things have come and gone over the last 20 years. Sometimes they are together, sometimes one or more will happen without others that had happened at the same time before, and some only happened a few times for a while (days to weeks/month) and then haven’t come back again. Years ago when things happened, they seemed to go away completely for a long while and then return, but I am noticing over the last years that things are more often getting less intense/severe and less frequent, but a lot is not going away completely anymore.


These are either current this month or have been occurring over last few months (varies by intensity and item):
• Bouts of Upper Right Abdominal pain, tenderness and feels like something inside (pain sharp and like something is being pinched with pliers). Sometimes also have nausea and cold sweats and sometimes pain in back at same time. Gets bad then settles down but keeps happening. Sometimes feels like a softball is in there, especially if I lay on that side. (it sometimes goes away for days or weeks and sometimes stays between mild and severe for days with almost no relief).
• Also get a horrible spasm pain in the same place as above when I bend over for short time.
• Bladder incontinence, frequency and urgency (varies from urgent to complete loss of control at times) (this one is new and has not happened in past).
• Bowel problems (changing from constipation to spastic after eating)(can change in day)(this one is newer also.
• Weight gain and Major increase in trouble losing weight or simply not gaining (I have improved my eating about 80% over 6 months with no weight loss)
• Eye problems: got real blurry again, dark spots, dark edges sometimes, things or world seems to move or wiggle for a few seconds, and things sometimes look ‘broken’ or just ‘wrong’. Occasionally, my eye would have a sharp pain behind it but that stopped. (It started this time during beginning of October and got worse for a little while, but has slowly gotten much better again). Something very similar happened earlier in the year also and most everything went away except some blurriness in distance stayed and then it just happened again and the blurriness got so bad that I couldn’t even read speed limit signs until they were at the front of my car and all of a sudden I couldn’t read anything close up either. **I had milder problem as a young adult and went to one of the walk-in eye clinics and got glasses. Things got better again and I stopped using and needing the glasses and I did another eye exam later and they said I was better then 20/20. I had no other eye problems for years after that one until the ones that have happened this year.
• Erratic and/or high heart rate that can last a day or several months (it did this from January to April most of the time.) (sometimes it is so bad that even laying in bed and just moving my arms around would send my heart rate over 130 and some days it never went below 90’s, even during sleep)(I got an Iwatch during this time, so it keeps track of the numbers automatically now) **updated, this has gotten better at rest but some days it still spikes between 120’s to 150’s by just walking around. I have not found a connection to why some days are better/worse then others.) (about a year ago I was having chest pain and shortness of breath with it also, but haven’t had the chest pain in a while now).
• Get short of breath with varying degrees of exertion (sometimes it’s very minimal and other times just walking to another room will do it).
• Trouble with balance, sometimes dizzy/light-headed and other times things just feel off or sort of wobbly and I have trouble walking straight. Sometimes it just feels like my legs are either to tired or to weak to keep walking straight. (I have learned to stay near walls and when it’s bad I just try to keep a hand on something as I walk and it’s better).
• Second time this year I got a very bloody looking eye (in end of October)(last one was early March).
• High pitch ringing in my head behind my ears (very different sound then the whooshing was, but has been here since that happened)


These either keep going away and coming back only mildly or are staying minimal and have not gotten to severe pain in at least last 6 months or longer but have not remained gone for years like a few things have:
• Joint pain/stiff /arthritis -all joints (always present but varies in level from aching to so severe I have not been able to lift my arm or rotate up at the shoulder.)
• Burning, tingling and numbness in feet and heel - most obvious and bothersome at night *currently present but mild (had a horrible time with right foot/ankle/big toe about 3 months ago and couldn’t walk without cane for several days) *(this was the first thing that ever happened that got better and then just started again and repeated this. I saw a chiropractor at the time and he said it was Carpel Tunnel and tried to help, but it didn’t really and when it did finally stop and go away, it just eventually started again. This is most frequent and is almost constant to some degree now. I do have short times of freedom now, but not like years ago).
• Numbness and tingling in hands and arms (very seldom both left and right at the same moment) and occasionally upper thigh (sometimes it will get so bad there is severe pain at night and I can not sleep.. Feels like my arms and hands are literally dieing on me). *present but mild
• Chest pain that can be mild ache, to sharp or squeezing pain. (very scary when happens and sometimes have nausea). Last very bad episode was in the beginning of the year and the pain was so severe that even breasts hurt at any touch-even trying to just lay down. There has been periodic chest pain since the one earlier this year, but not as severe.
• Pain in certain areas that is worsened by moderate pressure of touch or movement (usually consistent in upper arms, middle chest, top of head - sometimes so severe that even my own hair makes it hurt).
• Tingling and jerky in lower legs (assume it restless leg)
• Pain in my jaw and teeth (sometimes an ache or pressure and sometimes stabbing)
• Times of swelling, especially in face, lower legs, and feet/ankles (so severe I can’t move my feet much)
• Have trouble getting my lungs full of air, like there is pressure and they can’t inflate (sometimes severe pain if I try to get a full breath, but not always).
• Heartburn and Abdominal pain in other areas (not at same time but usually: left side & back or low abdomen or burning stomach pain)
• Weakness in arms that can be so bad I have trouble picking up my water cup.


Issues that happened in the past and would come and go like the stuff above but have either been completely gone or very rare and mild for at least the last year or more:
• Pleurisy pain (had multiple bouts, but not in several years)
• Pain in bottom of my feet is one that has gone to minimal for last several years but was so severe that I could not put pressure on my feet to just get out of bed without excruciating pain and it would last for months at a time and has happened multiple times over the past 20 years.
• Trouble swallowing occasionally (I will have periods where I seem to almost choke on anything, even my own saliva sometimes. I have only had bouts of this around 5 or 6 times over the past years that seem to last less then a month and then stops again).
• Multiple episodes of severe lower back pain, to the point of excruciating pain regardless of what I have tried to relieve it (sitting, standing, laying, etc…) (the last bad one was about 2-3 years ago) (several times over 10 years ago, it was so severe I was unable to even move around in bed and could not get up AT ALL for several days)
• Back pain in upper, ache down middle spine, shoulder blades, neck, shoulders; various places and times. Pains are never going in the same place at the same time, but different places at different times. I figured this was arthritis from being overweight or pinched nerves. (twice the pain became so intense that I finally purchased one of those padded neck braces to try to immobilize it to decrease the pain).
• Pelvic area pain the ranges from minor aches to severe and stabbing pains (in the past these have sometimes been so severe I have borrowed pain pills tolerate the pain but just had to lay in bed for several days. This was NOT connected with menstrual cycle pains. These happened probably a dozen times over about 20 years, but have not returned for at least 8 years or so).
• Hip joint pain (from minimal aching to severe stabbing feeling that felt like it was deep inside a bone or something). There was never anything I could do to relieve the pain (standing, laying, changing sides, etc…). I just had to wait it out and after hours, days or weeks, it would stop doing it. This didn’t happen very often and hasn’t return for several years.
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Re: First time and hoping for advice on information for a do

Postby iamhiding » Mon Nov 13, 2017 11:41 am

jimmylegs wrote:hi feel free to paste for review/comment. there's been some related chat here on the forum in the past so one of us may be able to provide relevant links also.

not that what i want matters, but aside from symptoms experienced, i'm interested in what's been offered for day to day treatment to date, specifically the natural help you mention, and also re the ptsd.



Thanks jimmylegs,

I did put it in the link above and I still feel like a hypochandriac. If I had gone to doctors or told people about this stuff everytime it happened over the years, I might believe that diagnosis because that list is craziness.

As far as day to day, because of the medical phobia, I have very rarely tried to get any treatment. Having said that, the first thing that happened in cycles like this was numbness and tingling in my hand and then all the way up into the arm. At that time I was about 20years old and new a chiropractor. I guess since I knew him already, I was able to go see him about it. He thought it was carpel tunnel and worked on it. It didn't seem to help and he said some people took time and treatment with that. Then, all of a sudden it stopped. Figured he was right and it just got better. Of course, it came back months later and he tried again and the cycle has gone on all these years. I left the State he worked in after a few years and so I mostly ignored all the stuff that started up after that and when that kept happening again and again. I have always assumed (and of course it still sure could be) that it was either the carpel tunnel or pinched nerves. I moved closer to where he worked again about 8 years ago and went back to him with some of the things and tried to explain some of the craziness that had gone on for so long, and he said that the body can put pains in strange places and we might just need to find out where it is localized at. We tried, but the craziness continued and then he stopped practicing. He is also a nutritionist and so we tried to look into allergies and food sensitivities, when things happened I tried to use homeopathic and other natural things to help the symptoms until it passed.

The thing I figured out many years ago was that as long as I could withstand it long enough, stuff always got better on its own. Until I realized that, some of the stuff scared the crud out of me but the doctor anxiety was worse then the pains.

I don't know if any of that answered your question, but if not just let me know and I will be glad to try better ;)
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Re: First time and hoping for advice on information for a do

Postby iamhiding » Mon Nov 13, 2017 11:49 am

Snoopy wrote:Hi iamhiding,

Multiple Sclerosis has a diagnostic criteria (The Revised McDonald Criteria). Part of the diagnostic criteria requires all other possible causes for a person's symptoms need to be ruled out. There is no symptom exclusive to MS, many other conditions, some medications, vitamin/mineral deficiencies and mental health disorders can cause symptoms similar to MS.

Unfortunately, there will be multiple tests which includes multiple Dr. visits. I know this isn't what you wanted to hear but it's best if you understand what is required. Most Therapists will go to Dr. appointments with their clients but it is charged like your appointment.

Information on diagnosing MS:
https://www.nationalmssociety.org/Sympt ... gnosing-MS

Some of the other conditions that can cause symptoms of MS:
https://www.nationalmssociety.org/Sympt ... o-Rule-Out
https://www.everydayhealth.com/multiple ... sclerosis/





Thank you Snoopy,

Yes, I am way to aware of the long problematic process and that is why I have been just living with it for over 20 years. I have done some research and have a little understanding and I haven't even made it to the first step of a general practitioner doctor, and was hoping that information provided in the best way possible without trying to guide or direct him/her might at least help bypass some of the very basic obvious things that I know many people spend years looking into. Since this is not something where I am seeing the first symptom, I was hoping that by doing this in a smart manner, I could decrease some of the medical need to the specific stuff.

And yes, in regards to your mention of therapists assisting in medical visits.... I have fabulous one and we have been working for a year to get to the point of my writing this letter in an attempt to get into a doctor (we did make it to get blood work, but of course it was just your basic stuff and that was part of the reason I thought that writing this might help because if I had done that before, maybe the doctor that ordered the blood work would have done more specific stuff).

I don't know what is going to happen or how far I can get, but at least I am hoping to try to start here.

Thanks
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Re: First time and hoping for advice on information for a do

Postby jimmylegs » Tue Nov 14, 2017 1:00 pm

hi ok first re the text.
1. journal and list is an excellent idea.
2. first time you expose your doc to this, make it an 'elevator pitch' that gets your xp across at a glance of a few seconds.
3. you can do this by: organizing your content thematically and reducing the level of detail.
for example your third section could be reasonably expressed as

3. INTERMITTENT LONG TERM SYMPTOMS (20 YRS)

A. pain (in descending order of frequency): chest (breathing), neck, shoulders, upper back, mid back, lower back (severe), hip, pelvis, feet (severe)

B. trouble swallowing, choking

within 3 A above, i don't know the order of frequency but perhaps you can arrange them as such. i did it in more of a head to toe fashion, with the exception of putting chest pain and airway stuff top of the list. also, if you can clarify subcategories of pain (eg bone, joint, muscle) i think that could be more informative for the doc.

can you finish up section 3, do the same with sections 1 and 2, and repost?

perhaps together, these could form a sort of single page 'table of contents'.
then you can add say one page for the long form of each.
you can probably leave some elements for verbal discussion, as long as the main ideas are flagged.
and of course you can have a print out of your own long form stuff on file (and on hand) for reference if needed.

thoughts?
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: First time and hoping for advice on information for a do

Postby iamhiding » Wed Nov 15, 2017 10:04 am

ok jimmylegs, thanks. I will look at it and see what I can do to format it more in that manner.

Thanks again
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Re: First time and hoping for advice on information for a do

Postby jimmylegs » Wed Nov 15, 2017 11:24 am

no problem i look forward to your next draft :)
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
User avatar
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Joined: Sat Mar 11, 2006 3:00 pm

Re: First time and hoping for advice on information for a do

Postby jimmylegs » Fri Nov 17, 2017 9:06 am

any update re section 3?
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
User avatar
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Posts: 10668
Joined: Sat Mar 11, 2006 3:00 pm

Re: First time and hoping for advice on information for a do

Postby MnRdunck » Sat Nov 18, 2017 6:37 am

Okay I also have PTSD as well as other things. It is crowds that get me as it is related to my PTSD. I am also in poor health. Any good health care professional is not going to look at the PTSD as psychological and physical usually are two different things. As long as that is not really in the conversation it won't be looked at. As far as being scared what I would do is close my eyes when talking to them IF that is what it takes to get you there. It is always best to look them in the eye but if your PTSD is keeping you from going when they come into the room close your eyes and retreat to your safe spot as long as you can still tell them what is going on. Rehearse it in the bathroom several times until you know that you can pull it off. I hope that helps.
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