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So tired of being 'possible'

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  • #16
    Is pain your main issue, Oli? Do you know specifically what doctors in the past have considered in terms of diagnosis? Maybe I have missed some of your posts, and if so I apologize and don't mean to ask you to repeat yourself. Is fibromyalgia being considered? I am a little perplexed that a 30-year history of difficulty was met with a blood test and the suggestion to exercise.
    MS with cervical and thoracic cord lesions

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    • #17
      Originally posted by Oli View Post
      Well I went and it was not so good. The dr didn't really 'get' what I was saying and suggested exercises. Exercises? Exercises? Give me a break. I used to work out with mr America back in the day. I have trained show horses for 30 years. I have worked very hard physical labor most of my life. I have done ALL kinds of physical therapy... Exercises ain't gonna do it. I have been in serious pain for my entire life during all kinds of exercise. Doesn't matter what I do. I want to know WHY I am in pain.

      The good news is that even though I have avoided it for 10 years and was terrified, I got a blood test. My Service Dog laid on my chest and smooshed his face on my face and distracted me so I didn't pass out.

      So maybe I will at least learn something from the blood test and be a 'possible something'...

      I kept on my mom about my history and she isn't talking much. I know there is a reason why I am missing 20 years and it is basically because of her. I understand why she doesn't want to bring it up.

      Thanks for supporting me today. I really appreciate it. I had to make some phone calls in my stressed out state to people who could calm me and talk some sense into my fear. It worked.

      Oli,

      Did you go to a neurologist? This seems like it would be a good starting point. Also the blood tests are a good place to start as well. Sometimes it is quite a long haul from the time diagnostics start until a diagnosis is found. Hopefully it wont be too long, but at least you have started the process! Are you returning for follow up?

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      • #18
        any other family members besides your mom that you can ask oli? aunts, or uncles? cousins who grew up with you who may now some of your lost years? its ok to grasp at straws if that is all there is. dont give up on answers. doctors dont know everything, they are only human.
        and I was going to ask bluering if there was any family history of Ms, transverse myelitis, epstein Barr?

        has either of you been tested for Lyme disease? Any joint swelling to go with the fatigue? how about mercury poisoning? have you had tests for that?
        dont give up on finding answeres.

        my friend with Ms was so relieved to know she had ms. sounds nuts, but it took twenty years to dx, but her son was dianosed right away. she knew he had it before the tests came back. and sadly enough when her grandson began to show symptomes (her other sons child) his parents refused to test. eventually they had to. Family history is of importance.

        we have lupus in my family. do you get any rashes on your face and neck? along with your symptomes? that is diagnosed by a rhumatologist. also get your vitamin D levels checked. there is something called low D syndrome that can have a number of effects on the body. a rhumatologist will check for low D as well.

        good luck and dont give up on getting an answer.

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        • #19
          At this point pain is my main issue with fatigue right up there.

          I 'feel' like I have a spinal issue in my lower back that affects the feeling in my legs. I also pinch nerves in my upper back and neck easily. And have near constant migraines.

          Last night I ended up with a pinched nerve in my leg and now tonight at 4am I have a pinched nerve in my upper back.

          I don't seem to have swelling in my joints visibly. I just know that every muscle hurts all the time and my lower back must be really messed up, not even laying down releases the pain.

          The guy was not a neurologist but more of a pain specialist.

          I don't have anyone to ask about my history. I didnt want to bring it up with my mom in the first place but people were pestering me to do it so I just blurted it out. I know she doesn't want to do it because she cause my memory loss from trauma.

          I havent been tested for Lyme or anything but hopefully there will be a lot covered in this blood test. I am not sure if I could go back for another one as it took me over 7 years to go get this one done.

          I think I am going to take the test results to a different dr because I really got freaked out by this guy.

          I will remember that it might take a while to figure out what is wrong...

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          • #20
            Originally posted by jody View Post
            and I was going to ask bluering if there was any family history of Ms, transverse myelitis, epstein Barr?

            has either of you been tested for Lyme disease? Any joint swelling to go with the fatigue? how about mercury poisoning? have you had tests for that?
            dont give up on finding answeres.

            my friend with Ms was so relieved to know she had ms. sounds nuts, but it took twenty years to dx, but her son was dianosed right away. she knew he had it before the tests came back. and sadly enough when her grandson began to show symptomes (her other sons child) his parents refused to test. eventually they had to. Family history is of importance.

            we have lupus in my family. do you get any rashes on your face and neck? along with your symptomes? that is diagnosed by a rhumatologist. also get your vitamin D levels checked. there is something called low D syndrome that can have a number of effects on the body. a rhumatologist will check for low D as well.

            good luck and dont give up on getting an answer.
            Hi, Jody. I'll take a turn at bat and answer those

            I've been tested for MD- negative tests. Lupus- negative (tested when I was 12 and again at 20). Lyme-negative (test at 22). Mercury-unknown (test inconclusive but symptoms not consistent). Vitamin D, C and B- good and normal over three month testing period. TransMy- symptoms not consistent. MS- there's the kicker. The only time I've gotten a doctor to test me for it they gave me a regular MRI and called it a day. They said there were no lesions seen so no doc since has agreed to test me. That was ten years ago. However, that was before I started to gather more symptoms, so I understand their reticence.

            I've been told it's all because I'm fat. *le sigh* I've been bigger than I am right now and I've always been able to walk in a straight line, not fall if I hit a wall, not have burning pain from the tailbone down and lift and lower my feet. I used to workout heavily too- I LOVE weightlifting and miss it terribly.

            I just found a new doc and am hopeful that she's starting to listen and really *see* me- and not just the fat. I'm hopeful and determined. Part of that is thanks to this community- so thank you.

            The doctor told me to work out more- so I did. Gradually increased working out, ate less and I know how to do it properly. Even worked with a trainer to make sure I wasn't doing anything too soon or too hard. Went fine for a month- then I was in so much pain I couldn't get out of bed; just laid there crying in pain. I called the doctor and she said to take an ibuprofen. Told her I had and it didn't do anything because I wasn't swollen- it was the same nerve pain I'd been telling her about. She said she wanted me to come in in a few weeks if it didn't get better.

            So two weeks later I came in- cane in hand. She asked what was wrong. I almost lost a screw right then and there; ended up just laughing instead. (There comes a point where it just gets humorous). She asked me why if I was in so much pain I didn't go to the ER. I just looked at her and calmly explained that I live on the 3rd floor, couldn't walk down the stairs. Also- having gone to the ER for nerve pain before- they wouldn't do anything to help; just push a drug at me or conversely not let me have ANY pain medication. So, what was the point?? She nodded and agreed.

            Told her that it all started to get more painful when I was working out. She looked confused and said, "That's not like Fibromyalgia. Something's wrong". I cried- I was so happy someone finally heard ME and not this fat body. So, I know she's open. Now it's just about getting insurance again so I can start the ride. Cant get something written on the chart that might lead the ins. co. to deny me because of previous condition.

            So she wants to test me again. This is good. She also thinks I'm diabetic- which is bad. I got dx'd diabetic from one test. This makes me doubtful, yet I'm open to the idea.

            So, I'm thinking Cushings, MS, Jus Barre are all options. Really- I've been living with the symptoms for so long- I'll be happy as peas just to have a name to it and not be told that the reason I can't walk without flailing my arms is because I'm a chubbster. Plus, with a dx comes possible treatments and physical therapies.

            I don't usually like typing all this stuff out- it reads like a sob story and I'm a fighter by nature so sobbing is best done quietly and alone. Perhaps it's good to have this here so others might not have to feel alone too.

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            • #21
              BlueRing, it doesn't sound like a sob story at all - indeed, many of us have experienced variations on that theme. I'm really glad to hear that you're finally being recognized and acknowledged by someone who is in a position to help you. You're so right - after living with these symptoms for as long as you have, diagnosis would come as a great relief. It certainly did for me.
              MS with cervical and thoracic cord lesions

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              • #22
                It reminds me of watching 'Mystery Diagnosis'. it can be so frustrating watching the Drs fleeb around being clueless. I certainly know that is the process I am embarking on...

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                • #23
                  Originally posted by Oli View Post
                  It reminds me of watching 'Mystery Diagnosis'. it can be so frustrating watching the Drs fleeb around being clueless. I certainly know that is the process I am embarking on...
                  Oli,

                  Since you are embarking on this diagnostic venture, so to speak, it would be a good idea if you establish with your physician (either this one, or any other you go to) that you intend on being a partner in your healthcare. You should really be aware of what you are being tested for now and in the future. This will give you some sense of empowerment and some feeling of control over what is happening to you in the diagnostic process.

                  Also since you have stated through your posts that you are "freaked out" and seem to have anxiety regarding this process, have you ever addressed this with a therapist? Perhaps this is something that you can ask your physician about as well. The diagnostic process can sometimes be very long, tedious, frustrating and involve a lot of testing. If you have anxiety over your blood being drawn, it might be beneficial for you to try and address this while you are undergoing testing. It might make the process more endurable for you.

                  You might also then able to address your memory problems as well and perhaps a therapist can help you sort some of it out. Not having memories since before the age of 20 years old under normal circumstances, is unusual.

                  If you dont go back to the physician who drew your blood, you might think of starting with a primary care physician. Start from the very beginning. You had mentioned something about this doctor being a pain specialist or something of that sort? I'm not personally aware of any pain management md who is going to perform diagnostics on someone who doesn't have a diagnosis yet. That's not generally how it works. A PCP to start and then he/she may refer you to a neurologist.

                  Just some thoughts, i thought might help you.

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                  • #24
                    Well, if I could 'come out' as a person with serious issues, here would be a good place because you guys are all SO nice.

                    I have been seeing a therapist for about 4 years now. I have PTSD and a few other mental health diagnosis. That accounts for the loss of memory and the severe anxiety.

                    My therapist and psychiatrist have been trying to work with me to get me some help for my pain issues and I just made a bit of a mistake trying to do it all to fast before I could say no like I have been all these years. I kind of 'jumped' before I could back out.

                    My therapist had a plan to speak to the Dr. beforehand and stuff but I messed it up. I will try again with a different Dr. and do it right. And at least I got the blood work done!

                    I looked up all the different tests that he is running on me and it is mostly autoimmune type stuff.

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                    • #25
                      Hi Oli. I think you are very wise to return to the original plan, being guided by your therapist and psychiatrist. It's easy to get ahead of yourself when you're anxious. Consider your experiences of the past few days as a "trial run" which adds to your knowledge base, and go from there with the expert help of your therapist and psychiatrist.
                      MS with cervical and thoracic cord lesions

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                      • #26
                        Now you know you can do it. Snuggled your service dog and you did it. Facing that kind of fear is a big deal. Now, time to see how adding your tdoc into the mix helps

                        Glad you are starting to get seen again!

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                        • #27
                          Originally posted by Oli View Post
                          Well, if I could 'come out' as a person with serious issues, here would be a good place because you guys are all SO nice.

                          I have been seeing a therapist for about 4 years now. I have PTSD and a few other mental health diagnosis. That accounts for the loss of memory and the severe anxiety.

                          My therapist and psychiatrist have been trying to work with me to get me some help for my pain issues and I just made a bit of a mistake trying to do it all to fast before I could say no like I have been all these years. I kind of 'jumped' before I could back out.

                          My therapist had a plan to speak to the Dr. beforehand and stuff but I messed it up. I will try again with a different Dr. and do it right. And at least I got the blood work done!

                          I looked up all the different tests that he is running on me and it is mostly autoimmune type stuff.
                          Oli,
                          A lot of people here and elsewhere have more than just physical diagnoses and issues. I'm glad you feel comfortable enough to say so Hopefully with the help of your psychiatrist and therapist you will be able to wade through the process of differentials and diagnosis and be on your way to a more healthful life and good quality of life.

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                          • #28
                            Thanks for letting me share. Not everyone is so understanding. You guys are great and very supportive!

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                            • #29
                              I am so sorry I have missed this thread for the last few days. I am the wife/caregiver of my husband who has a severe case of MS. I am so sorry you two are going thru all of this, the flip side to the story is. My husband was perfectly healthy one day and the next all you know what broke loose. He virtually walked into the hospital a day and 7 days later was on life support. They too tested him for every thing possible to rule out MS since there is no real test for MS. I don't mean to scare you from my post because that was all almost 6 years ago and things have gotten alot better. He is still unable to walk but with the right treatment many things are possible. I hope both of you find the answers you are looking for and get started in the right direction.

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                              • #30
                                Originally posted by MSWIFE1 View Post
                                I am so sorry I have missed this thread for the last few days. I am the wife/caregiver of my husband who has a severe case of MS. I am so sorry you two are going thru all of this, the flip side to the story is. My husband was perfectly healthy one day and the next all you know what broke loose. He virtually walked into the hospital a day and 7 days later was on life support. They too tested him for every thing possible to rule out MS since there is no real test for MS. I don't mean to scare you from my post because that was all almost 6 years ago and things have gotten alot better. He is still unable to walk but with the right treatment many things are possible. I hope both of you find the answers you are looking for and get started in the right direction.
                                Thank you so much for your kind words. I can't imagine how difficult that must have been for both of you. Were they doubtful of the MS dx because of his sudden onset with symptoms? Truly, your story gives me hope. Thank you for sharing it.

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