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    Desperate for Relief and Answers

    I found this message board recently when trying to research MS and have found it to be a great source of information. I've been on this painful and frustrating journey of trying to get a diagnosis for several months. When I started to read through the posts here, I decided to share my story in the hopes of getting some answers from people who are suffering from many of the exact same problems I am having.

    In August, I finally decided to see my GP about problems that I've been having with the limbs on the right side of my body. The arm and fingers on my right side often feel like they are asleep with an annoying tinging, prickling and painful sensation. I also have the same feelings in my right leg that run from the top of my leg, through my knee and all the way to the ends of my toes. My knee and calf ache with pain. My GP referred me to a Neuro in August and that's been a very frustrating ordeal. At my first visit with the Neuro, he did a very generic reflex test and ordered an MRI of my lower back. He also ordered a nerve conduction test for my right leg only. The MRI of my lower back came back normal and won't do anything else until the nerve conduction. He did change the nerve conduction to include my right arm but I've yet to have it. There is a six week waiting time for those tests so I'm waiting...

    My symptoms have grown to be worse and at times unbearable. In addition to the tingling and numbness, now I'm waken in the morning with pain in my hands. The joints are stiff and bending my fingers is painful and difficult. A friend recommended a Neuro that is specialized in MS and when I called to make an appointment, they told me I would need a referral or the records from the first Neuro that I saw. I tried to explain to them that the first Neuro has only seen me twice and done nothing but they still required records. I called my friend back and she said that I would have a much easier time getting an appointment with a referral. At that point, I made an appointment with a Chiropractor last week and he immediately worked me in to his schedule. If anything, I figure he can help with the pain.

    Last week was my first appointment and for the first time in awhile, I felt like someone was actually listening to me. After we discussed the problems I'm having with my right arm and leg, he did a reflex and muscle test and said there is a significant weakness on the right side. He also pointed out that the toes on my right foot were purple and there seemed to be some sort of circulation problem. The toes were also cold. He did x-rays to rule out a disc problem and ordered an MRI of my brain and neck. He did say that on the x-rays, there looked to be a fusion between two of the vertebrae at the top of my spine. He did an adjustment and said he would do all he can to help manage things until I have an answer and that once we have the MRI results, he will refer me to the Neuro that my friend recommended if needed.

    We talked briefly about MS and he told me to take some time to think about my health over the last few years and to write down any problems that I've had. When he said that, I told him about the HORRIBLE pain I had in my feet at the beginning of this year. I would wake up in the mornings and when my feet would hit the floor, it was sheer pain. It felt like I was walking on my bones and it would take me awhile to get going. It hurt so bad during the day that wearing shoes was impossible. I saw a Podiatrist at the time and he did an MRI on my feet and said it was normal with no broken bones. The Podiatrist did note that my toes were starting to cross, more so on my right foot, but said it was just an age thing. (I'm only 36.)

    And then I had a light bulb moment. In May of 2010, I developed problems with my bladder. I was having constant bladder spasms and couldn't completely empty. I saw a Urologist and first tried catheter treatment but it was unsuccessful. Test showed that immediately following urination, my bladder was still 80% full. In July the Urologist performed a bladder hydrodistention and cystoscopy. The final diagnosis was Interstatial Cystitis. Things are better with only mild spasms.

    I've not noticed any problems with my vision. I have developed a twitch in my left eye but nothing else that I can think of. I've had some memory issues but attributed those to a big family and hectic life.

    After talking with the Chiro and doing internet research, my gut feeling is that this is MS. I've read story after story of people with the same problems. I'm trying so hard to stand strong in my faith and keep a positive attitude but at times, it's hard. I'm a stay at home mom to three boys and every day it's getting harder and harder to fulfill my responsibilities and be everything they need me to be. I'm having more bad days than good days. For example, today my leg hurts so bad I just want to lay in bed and cry.

    I'm right handed and feel like I'm losing muscle strength everyday. It's hard to do something simple like fold clothes because I'm losing my grip. I even had some difficulty holding a pen today.

    I had the MRI of my neck and brain today and in a strange way, praying that they find something so I get help. I'm struggling with that because no one should ever want something to be wrong with them.

    I would appreciate anyone's tips on making myself heard. I KNOW something is wrong with my body and I KNOW that it's getting worse and worse. How do I help others understand that?

    Sorry for the ramble and thank you for reading if you've made it this far.

    #2
    Hello. Hope you get some answers. It seems like your doctors are doing all the tests that can be done.

    Comment


      #3
      welcome

      Hello bamamom,

      I know what it's like to have lots of symptoms and be waiting for answers. Also I can imagine with three kids at home it took you a while to really sit up, listen to your body and put it all together.

      It seems like you are having some really tough symptoms and one of my biggest mistakes in the diagnosis process (still currently undiagnosed) was not insisting that my symptoms be treated regardless of my unclear diagnosis.
      It's so hard when dr.s dont seem to be listening and they often dont really realize how important it is to give meds and treatment for pain and discomfort (while the root of the problem is still being searched for)

      I have found that suffering through painful symptoms adds to the stress of my situation greatly. (and often it is unnecessary)

      The other thing is: I am not good at medical stuff, (lots of other people here have much more specific ideas etc for you) but I think it is really important for you to have extensive testing for other issues like Lupus, vasculitis and other such kinds of illness in addition to the MRI and MS testing also being done.
      There are genetic tests which can also be performed.

      Frankly I am surprised that neither your PCP or neurologist have suggested these sorts of blood tests. I would get on that ASAP.

      I might also consider seeing a rheumatologist. Although my issues are currently mainly neurological the doctor spending the most time ruling out MS with extensive bloodwork testing and genetic tests has been my rheumatologist. I was seeing her because of joint pain, not all that disimilar to what you have described. Consider it.

      I know everybody says "So many things mimic MS" and then you look and look and you think it has to be MS. It fits so well to what I am experiencing. (and we read everything through that MS filter)

      The simple truth is though: no, it can be something else altogether and that something else might even be more easily treated. (which I am still hoping for.) Every week I read about something else which "kinda2 fits my symptoms but isnt MS. I am starting to really realize just how difficult it is to diagnose such symptoms like I have since seeing how many things are out there as well as overlap diseases.

      I also want to say Bamamom, I think you are being incredibly brave and strong for keeping it together. These are tough symptoms and they require strength and endurance (also psychological endurance) so I am so glad you have come here to MS world. I feel so supported and helped here. I think you will too.
      Hoping you feel better soon!
      Lynne
      *undiagnosed and just hangin' in there somehow*

      Comment


        #4
        Lynne- thank you for the encouraging words. Your comment on getting treatment while trying to diagnose really hit home and is a huge part of my frustration. The first Neuro offered nothing in form of treatment..just testing. The Chiro that I saw for the first time on Friday has done more for me than my PCP and Neuro combined. I had an adjustment, electrical stimulation therapy and spinal decompression on Friday, Monday, and go again today. I'm hoping he gets the MRI results soon and has more to go on.

        The Chiro did tell me on Friday that he was also surprised that no bloodwork had been done and that he would be ordering it after he sees the MRI report. He also mentioned a Rheumatologist. He told me to gather a family medical history. My father couldn't tell me a whole lot other than both of his parents were diabetic and arthritic. My mother and I do not speak to each other so I called my aunt who is also in the medical field. When I asked about auto immune disorders, she told me that my grandmother had Sclaraderma. My aunt also has a daughter close to my age and she has recently developed an eye problem. She's been on steroids for several months and the doctors have begun to check her for Lupus. Could we all be connected?

        I'm praying those MRI results come soon because my body needs some relief. The numbness in my leg and the pain in my hands and feet are starting to suck the joy out of my life.

        Comment


          #5
          Hello Bamamom and welcome to the board. I'm sorry that you are here, but this is a great place for support.

          It sounds like your chiro is doing what really needs to be done. You should definitely have bloodwork to check for issues like Lyme, Lupus, B12 deficiency, thyroid, etc. These are all tests done to exclude those issues so that you can move on in the diagnosis process. You may also want to ask for a Vitamin D test and/or an LP (lumbar puncture). Low Vitamin D affects the immune system but they don't really know how.

          Once you are diagnosed with one autoimmune disorder (the IC) it wouldn't be surprising to be diagnosed with another. I am currently diagnosed with 4: ITP blood disorder, rosacea, MS and IC (diagnosed in that order). I can't tell you anything about the family connection/genetics.

          Good luck and it sounds like you are finally on track to start with a diagnosis. And I agree that in the meantime, you should ask for symptom/pain management.

          Comment


            #6
            hi and welcome.....

            I, like you and so many others suffered with symptoms for years not knowing what the heck it was.

            I think fact your already at a neuro is great! I also agree with whomever else posted about blood work. You should have your b12 and vitamin d levels checked and also blood work to rule out rheumatoid arthritis and lupus.

            I went thru all the blood work for years other xrays, varying dx's till finally i met my neuro told him hey i def. have ms we did the mri and boom.

            meanwhile diosmin it's called and you can find it online or in natural food stores under label "lovely legs" has helped me tremendously with my circulation problems. A pill a day and my hands and feet do not swell anymore. I'd also start taking some vitamin d and b12 while your awaiting the results. It could possibly help a bit.

            Going thru the guessing game can be the most challenging part of it. Just hang in there your doing a great job sounds like. You can also try yoga that should help with the pain your describing, and someone here told me to use playdough for my hand pain and issues. also works.

            welcome again! update us with your mri results. Remember MS is a managable disease if it happens to be that. It affects everyone differently.
            Jen Dx'd 5/11
            "Live each day as if it were your last"

            Comment


              #7
              You have one great Chiropractor, keep that jewel you have found! He has done much of what your PCP or general neuro could have done. At least you will be getting some answers from him on your test results. You do need to get into a MS Neuro asap though. With the many nasty things going on they can help you on the symptoms (regardless of outcome). I have had the foot/ankle/leg thing and it is no dang fun at best.

              Hang in there, we will be thinking kind thoughts and sending prayers your way.

              Debbie

              Comment


                #8
                Wow-can't say I won't be glad to see this day come to an end! I woke up this morning to the usual stiff and achy hands that take about an hour to soften up and feet that feel like they could just break as soon as they hit the floor. I did my best to suck it up like I've been doing and push through so I could get the kids to school. My Chiro appt was at 11 and the pain/tingling/burning/aching in my right leg was so bad and the numbness and weakness in my right hand (specifically my pinky) was so bad that I came undone. I couldn't hold the tears back anymore and explained to him that I wasn't just upset from the pain but from the fear that my hand is going to lose all feeling and function before this gets figured out.

                Ended up that he already had my MRI results from yesterday and there's reason to be concerned. He said the brain scan looked good but the cervical scan did not. He used a lot of words that I've never heard before and it was hard for me to concentrate and remember it all because of the pain level. I know he said that the nerve openings near my C3 and C4 have narrowed and are pressing on the nerves. He mentioned some degeneration..not sure if it was disk related.. It seemed like he went on for a long time with a list of concerns..

                I was surprised when next he said that he had already called the first Neurologist I saw (who I didn't like and blew me off when I mentioned my neck) and my PCP. He asked if I had heard from the Neuro this morning and I told him I had not. This has me a little worried because my MRI wasn't over until almost 1:30 yesterday afternoon and this all happened at 11:15 this morning. What's causing his sense of urgency that I don't know about?

                He did say that the things he's seen on the cervical MRI would not cause the pain and other symptoms in my leg. He's puzzled because the MRI that I had of my lower back a month ago was normal (according to the Neuro.)

                Chiro told me that he was not going to do anymore adjustments on my neck because of this new information. He did the usual electrical stimulation and spinal decompression and I pretty much cried through the entire thing. Tonight's been hard and I just feel broken.

                I am terrified that I am going to lose all ability in my right hand before this is resolved. My pinky finger feels gone. I was helping my son do his homework tonight and I couldn't write the number 8 or barely hold the pen. I've locked myself in the bathroom and cried more than once today. My husband has been out of town with work and when he called from the airport tonight before his flight home I just cried.

                Since the Chiro today, I've had bladder spasms, twitching in the left side of my face, tingling in my scalp and tingling but only mild in my left arm and leg. Advil is doing nothing!

                I see my PCP tomorrow morning. He knows my Chiro well because their office are next door to each other. Chiro called my PCP for pain meds and said he'd call me when the Pharmacy had it. I hadn't heard anything by 4 and when I called my Chiro he told me that PCP wouldn't write it without seeing me and just apologized. He's strict on writing scripts and I have anxiety over whether or not he will give me anything.

                I'm not going to let them blow over the fact that I was diagnosed with IC a year ago and have a grandparent that had an auto-immune disorder. I'm printing stacks of information and taking it with me tomorrow to the PCP. I pray they will do blood work to check for Lupus and other things.

                Again, thanks for listening and encouraging me.

                Comment


                  #9
                  I have a lot of the same symptoms that show up in MS. After years of searching for an answer, a doctor finally suspected MS and ran many tests- blood tests, MRI's, VEP BAER. It didn't look like MS, but they aren't 100% sure because of the symptoms. I was having vision, hearing, processing, and speech problems. I was having memory and cognitive difficulties. There there was all the weird pain: flu like, pins/needles, feelings of bug bites, stabbing, electrical.... Urinary problems, numbness, other weird sensations, dropping things, stumbling, falling....

                  They finally found a B12 deficiency. MS testing is on hold while they treat the B12 for 6 months. I'm feeling a lot better, though the symptoms are not completely gone.

                  B12 deficience, if low enough for long enough, causes demyelination of the the nerves. My MS specialist even had a patient sent to him who had been in a wheel chair for a while thinking it was MS, but it was B12.

                  At least 4 doctors missed doing this blood test.

                  Several MS specialists I contacted needed a referral from a neuro, but I found one who would see me without it though my GP was going to refer me if needed.

                  Comment


                    #10
                    Wow, you sure have been thru alot! I agree with the others that the chiro has been great and proactive. I suggest you get a copy of the MRI report so you can read it thoroughly yourself. Not that I expect a layperson to understand all the language, but you were in no condition to take in all that it said. Plus you may find the report useful as you go thru the diagnostic process.

                    All the stress is probably ramping up your symptoms too. Hoping your symptoms calm down as you get some answers.

                    I don't have an opinion on what is going on, but I also sought help from a chiropractor with my first exaserbation. It took months for things to progress and for doctors to put it all together. Best of luck to you as you go thru this!

                    Comment


                      #11
                      Hi Bamamom,

                      Sorry you're here, but welcome. I'll have to say chiropractors have done more for me than any neuro ever has. Stick with him he sounds like he cares.

                      A couple of things you can do immediately is go gluten free. It was my chiro that introduced me to an "anti-inflammatory diet" Learning about foods that can cause inflammation to your tissues, organs and joints is a way to empower yourself in this journey of figuring it out.

                      If you haven't been yet, I would get tested for Lyme Disease. It also mimics MS symptoms.

                      Good luck, I hope you get some answers soon.
                      Opiegirl, Dx 1991
                      Have never used DMD's.

                      LDN 9/2011-9/2012 & just started again 6/14
                      Estriol 9/12-present
                      Still Hopeful.

                      Comment


                        #12
                        At what point should someone go to the ER? The numbness and pain are intense. I get this feeling like bugs are crawling down the back of my head. The skin on my right side itches. Haven't heard from Neuro.

                        Comment


                          #13
                          My recommendation is to call your neuro and/or your PCP. If they won't do anything for you and you are that uncomfortable, go to the ER. Be sure to tell the neuro/PCP that you are at the point of going to the ER so that they understand how serious it is to you.

                          Comment


                            #14
                            More frustration and symptoms and still no answers. I guess it's easiest to add to my original post in hopes that I can gain additional insight.

                            The results of my brain MRI (no contrast) were normal. The cervical MRI showed a few disc problems but nothing that anyone has said to be significant. After seeing the MRI, the Chiro referred me back to my PCP to order Neuro testing. Last Friday, I finally had my appt with a Neurosurgeon to discuss the MRI and my symptoms. Per NS, it seems unlikely that my arm and leg problems are related to cervical stuff. The NS ordered an EMG and NCV to be done by his Neurologist partner and the tests were yesterday.

                            On Sunday afternoon I started to have tremendous pain in my neck and back (which I've had for a few weeks now also) and within a few minutes the right side of my face went completely numb. I told my husband and he rushed me to the ER because my face was drooping and looked similar to a stroke. Spent 5 hours at the ER where they said it was probably not Bells Palsy because the drooping eased up while there. They did a CT scan (no contrast) and said it was normal and to be sure to follow up with the Neuro for testing on Tuesday.

                            Had the EMG and NCV testing yesterday and it took almost 4 hours! At the end of the appointment, the Neuro told me that I have "no clinical signs on MS" and that I need to relax because I seem really depressed. I came undone and told him it's because I'm scared to death of what's happening to my body and that I've seen 8 doctors since the beginning of August and no one is telling me anything. Then I told him that even with what happened with the facial paralysis, I have no clue. I said that I wouldn't even know what to do if it happened again today...go to ER?? What do I do? He said I don't need to go to the ER..I just need to take a few good deep breathes. I wanted to punch him!

                            Something is really wrong and I know it. My face is numb. My right eye feels like it's open only about half way. My ear is hot and rings all day long. My hands hurt. My feet hurt. My back hurts.

                            I don't see him again until next week to get test results. This is the most irritating experience I've had in my entire life!

                            Comment


                              #15
                              This is the most irritating experience I've had in my entire life!
                              "Irritating" doesnt sound like the right word.
                              Try:
                              scary?
                              frightening?
                              confusing?
                              heartbreaking?

                              I am so sorry things are dramatic and mysterious.
                              And I can imagine what is going through your head, and what you must be feeling. I really can.

                              I dont know what to tell you.
                              So just imagine I am holding your hand instead.

                              hugs,
                              Lynne
                              *undiagnosed and just hangin' in there somehow*

                              Comment

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