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    Heartrate and breathing?

    I had my first MS episode 5+ years ago. Several months later I developed intense tingling and pain in both hands. They did 1,000mg of corticosteroids for 5 days.

    It took me 3 years to get a definitive diagnoses from a doctor at a MS clinic, MS. It's been a continual downhill since then. Extreme fatigue. Skin changes, rashes, and at once matching the lupus across the face but it left. Extreme dryness of skin all over, rashes at times, redness, and the only thing multiple dermatologist said was use more morturizer.

    Resting heart rate without medication 150. Shortness of breath at random times and at times pretty severe.

    I've got to multiple and multiple doctors about such and they say "common with MS". My MS doctor said "something got screwed up with your immune system from the corticosteroids". Also she said you have a very very minor case of MS. Cardiologist said nothing wrong with heart after many many test.

    I've not been on any MS medication. I have not developed any new lesions in 5+ years.

    Anyone else have these symptoms. I can't work. I can't walk more than a few minutes for running out of breath. Extreme stiffness. I do some light exercise that I can. But for me to get on my knees on the floor and back can take a few hours to recover from that.

    I'm not saying I don't have MS. I'm just stuck in limbo of can't do anything for years now.

    #2
    Hi Nathan,

    I'm sorry you are having a hard time lately.
    Based on your symptoms, I'm wondering if you were misdiagnosed or have MS and something else going on? I am not qualified to determine what ails you, but I looked up some of your symptoms and came across Lupus as the culprit. You already mentioned lupus here, so it perked up my curiosity.

    Some of the symptoms (but not always) include:

    Fatigue
    Fever
    Joint pain, stiffness and swelling
    Butterfly-shaped rash on the face that covers the cheeks and bridge of the nose or rashes elsewhere on the body
    Skin lesions that appear or worsen with sun exposure (photosensitivity)
    Fingers and toes that turn white or blue when exposed to cold or during stressful periods
    Shortness of breath
    Chest pain
    Dry eyes
    Headaches, confusion and memory loss

    https://www.mayoclinic.org/diseases-...s/syc-20365789

    I hope you can find some qualified Doctor for further testing to determine what's going on. A Rheumatologist is best for this. I feel for you and hope you find better days.
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator

    Comment


      #3
      Not so sure all those are common with MS. I would be concerned with the 150bpm heart rate. Are you sure that's resting heart rate, as when you are on the couch watching TV, sleeping or otherwise sedentary?

      Do you ever practice any breathing exercises when you notice you are short of breath?
      The future depends on what you do today.- Gandhi

      Comment


        #4
        Originally posted by Seasha View Post
        Hi Nathan,

        I'm sorry you are having a hard time lately.
        Based on your symptoms, I'm wondering if you were misdiagnosed or have MS and something else going on? I am not qualified to determine what ails you, but I looked up some of your symptoms and came across Lupus as the culprit. You already mentioned lupus here, so it perked up my curiosity.

        Some of the symptoms (but not always) include:

        Fatigue
        Fever
        Joint pain, stiffness and swelling
        Butterfly-shaped rash on the face that covers the cheeks and bridge of the nose or rashes elsewhere on the body
        Skin lesions that appear or worsen with sun exposure (photosensitivity)
        Fingers and toes that turn white or blue when exposed to cold or during stressful periods
        Shortness of breath
        Chest pain
        Dry eyes
        Headaches, confusion and memory loss

        https://www.mayoclinic.org/diseases-...s/syc-20365789

        I hope you can find some qualified Doctor for further testing to determine what's going on. A Rheumatologist is best for this. I feel for you and hope you find better days.
        I went to a specialist, a theumatologist. He did the typical test and nothing showed up. Negative ANA. He said until that changes, nothing. The rash on my face comes and goes and I didn't have a picture so nothing.

        Yes it's resting heart rate. I take medication now to get it down to 85-90 at rest. I've had test after test cardiograms, echo, wore halter monitor for a week, nothing. The cardiologist basically said at the end, it's probably MS related.

        I lost count how many doctors. At one point a year ago I stopped at 75+. Same thing. It's either "it's MS related" or the MS/neurologist say it's something else.

        In the mean time my "very very mild" MS gone to nearly dibilitating. I can't work. I can't file for anything because it's very mild MS. In the mean time my skin continues to try and kill me. Tingling in the hands which I have learned is normal for MS. I can't wear pants because they rub across my knees and it's incredible pain. At times I go down in pain if I walk in the house and the air blowing from the A/C catches me wrong, the pain on my skin from my hair.

        I just don't know what else to do.

        I'm starting copaxone soon. I really can't imagine having MS and not having had a relapse with the stress I'm under. Lost my job. Told it wouldn't come back with the right drugs. Moved to another state. Got job. Lost job because of the breathing. Moved in with parents at age 48.

        I'm dead broke now after 5 years of this. Sold all stuff, my house, my vehicles. Lost job at 2 of 3 of the only companies in the western hemisphere that do what I do and spent 25 years in.

        Even the neurologist that finally referred me to the MS specialist can't come to an agreement on what I have. The specialist is done, nothing is wrong with you. The neurologist was of the opinion it was never MS.

        Comment


          #5
          Hi Nathan,

          Sorry to hear. I am a little confused. Was it a general neurologist who diagnosed MS and the MS specialist said not MS? Or are you saying MS specialist still thinks MS, but the symptoms are not MS?

          It is rare to hear a neurologist say "mild" MS anymore, as MS may can be mild until it is not. Nothing against copaxone, but it is a very old drug and there are newer meds with a much higher efficacy rate. Was this your choice or neuro's? The MS specialists I have seen try to steer new patients away from the older less effective drugs to newer ones. These two things make me wonder about your MS specialist.

          Aside from MS, have you looked into getting disability based on your heart rate issues and breathing? Will your PCP support you? It may be worth a consult with an SSDI attorney. They don't get paid unless they take your case and are successful. Even then, their fee is capped. Seems the worse they could say is that they won't take your case.
          Kathy
          DX 01/06, currently on Tysabri

          Comment


            #6
            Hi NathanL.

            The specialist is done, nothing is wrong with you. The neurologist was of the opinion it was never MS.
            This statement appears to indicate that you do not have MS. If you had testing that indicated you have MS you should take all of your test results to another Neurologist for another opinion.

            There is a criteria by which MS is diagnosed, The Revised McDonald Criteria.
            https://www.nationalmssociety.org/Sy.../Diagnosing-MS

            It is not uncommon for MS to be misdiagnosed. If you search the internet you will find multiple articles about the Misdiagnosis of MS. MS does not cause skin problems. Breathing problems should be evaluated by a Pulmonologist who can test your lung function. I have breathing problems but it has nothing to do with MS, mine is due to Asthma that was diagnosed a few years ago.
            Diagnosed 1984
            “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

            Comment


              #7
              Sorry to hear about your symptoms.

              A continual decline, with no new lesions seems an unusual combination for MS.

              I'm also curious about your dx.
              ~ Faith
              MSWorld Volunteer -- Moderator since JUN2012
              (now a Mimibug)

              Symptoms began in JAN02
              - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
              - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
              .

              - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
              - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

              Comment


                #8
                Originally posted by SNOOPY View Post
                Hi NathanL.



                This statement appears to indicate that you do not have MS. If you had testing that indicated you have MS you should take all of your test results to another Neurologist for another opinion.

                There is a criteria by which MS is diagnosed, The Revised McDonald Criteria.
                https://www.nationalmssociety.org/Sy.../Diagnosing-MS

                It is not uncommon for MS to be misdiagnosed. If you search the internet you will find multiple articles about the Misdiagnosis of MS. MS does not cause skin problems. Breathing problems should be evaluated by a Pulmonologist who can test your lung function. I have breathing problems but it has nothing to do with MS, mine is due to Asthma that was diagnosed a few years ago.
                I had 4 bands on the lumbar puncture. Then the doctors assistant said it's not enough to tell if it's MS because if you have had diabetes for X number of years it goes up. I've had it for 43 years.

                The MS specialist/neurologist said she diagnosed MS based 100% on the MRI. 6 lesions to start, now all but 2 have resolved. Said she sees it every day at the clinic.

                It's the only MS clinic in the state I'm in. I'm not axactly in a posistion to go out of state and pay.

                Comment


                  #9
                  Sorry I posted too soon.

                  It took almost 2 months from when I first started having issues that it was full blown appears to be MS.

                  I first was diagnosed by a neurologist as having ADEM because at the time the thought was I had shingles on my arm. I first went to a clinic about the slight difficulty walking and the pain in the arm. I was never asked to take off my jacket in the winter "It's cold out use lotion on your arm", take antibiotics for an inner ear infection.

                  Things got worse. ER did cat scan. Said doesn't show anything. If it gets worse go to a neurologist. It got much worse. The neurologist could look at my cat scan. You could clearly see something there. The report said they could see it as well. Said we'll do MRI. The first MRI I could get scheduled was 7 weeks out. I went to another doctor, an internist. he got me a MRI scheduled in 2 days.

                  MRI. I took the CD from the tech and he asked "how long have you had MS?" Gee thanks.
                  An hour later I saw a neurologist the internist had made an appointment with.

                  2 minutes of looking me over. Walked out to look at CD for a few minutes.
                  30 second conversation. "You have massive brain damage", "You will never walk again", "In 2 years you'll need to be strapped into the wheelchair to keep yourself in". I'll make an appointment for a lumbar puncture. Have a nice day.

                  In 3 days things got much better. I went back to work. I was driving 100 miles to work each way.
                  I went to another nuerologist having skipped the lumbar puncture. He first looked at MRI and looked at my "shingles" on my arm and said ADEM. You're done. That's it.

                  He schedule another follow up MRI. I went to get MRI and the hospital had no place to sit down. I asked for a wheelchair "nope, locals walk down the street and steal them".

                  I moved on. Continued to work for a few months. All that happened in January. Late may my hands felt like my skin was being stretched too tight. Slight tingle but literally too tight.

                  Another neurologist cause the one that said ADEM had moved on to another location. He said 5 days of 1,000mg of corticosteroids. Said push it even if your blood sugar hits 600. Just keep it under 600 and get as much as you can.

                  I did all 5 days and never broke 275 in blood sugar.

                  At that point I pretty much wasn't working. I did odds and ends around the house to keep hysically busy. I put in a radio antenna for my ham radio by digging 32 small ditches by hand. I was busy.

                  Shortly after the corticosteroids my stomach on the right side started to hurt. No constipation.

                  By the fall I started looking for a new job.
                  I found one out of state in a location I wanted to live.
                  Job of a lifetime for my line of work.
                  Head of engineering depart, full relocation.etc...not bad for someone with a GED. I was pumped.

                  I moved. Started work.

                  3 months in I was trying to walk from the car to walmart to go to the pharmacy. I couldn't move 5 feet without getting out of breath. Went to ER. They did another MRI and couldn't read my last one. 500mg of corticosteroids.

                  I moved back to where I started. Long line of various doctors. Finally I saw a neurologist that is in the same hospital system the MS clinic is. I tried the MS clinic and the assistant said they only take people who have had a MS diagnosis first.

                  That neurologist scheduled a lumbar puncture that I had never done. He did all kinds of physical testing. Blood work looking for lyme, chest xray and such.

                  Nothing, he said the MRI doesn't look like the typical white out ADEM MRI but yu can have ADEM with less, which is what I had. He said "I don't think it's MS, nothing I couldn't do. Tandem walking, no problem, for a while when I first went back to work I had to go to the field and walked on elevated steel 300 feet off the ground with no problem. Hop on one foot, no issue, no lack of strength. The hands still bothered me but it was an inconvenience.

                  Things slowly slid down to worse. He finally got me in to see the MS specialist.
                  3 hours of interviews with the assistant, she was pretty vocal about it not being MS but she's not the specialist. The specialilst comes in and says "I've gone over everything in your case and I know everything that is going on". I asked my mom to leave and I asked "So if it's MS is this something I can live alone with?" Ummm she turned to the assistant and asked "I dunno, can he walk". I was super freaking ticked and held it in. 2 minutes after telling me you knew everything about me case you didn't know if I could walk. Then not ask me 3 feet away, turn and ask the assistant across the room.

                  I had another MRI. She did some more blood work, most of it I had done earlier.

                  Go back, tell Dr. I wasn't real happy with my first visit. "Oh I get like that at times so in to actually doing my job".

                  "It's MS, I see the same MRI in here day in and day out".
                  Take copaxone, no issue since you already take a shot for insulin. We'll call you. That was it.

                  Things hae steadily gotten much worse. I'm not on copaxone. I have yet to get a 2nd opinion from 75+ doctors that match. The doctor that recommended the specialist wouldn't call it ADEM, it just "could have been".

                  Now my skin is soo tight. I have the same high heart rate. Same difficulty breahing. Muscles soo tight it's almost impossible to get into a car. Twice I've had the rash across my face and nose. My lips are chapped all the time. My fingers look like I just got thru taking a bath, wrinkled. I'm soo fatigued at times I wonder if the difficulty breathing is from being too tired to breath. The breathing hurts. I take medication to get the heart rate down to normal. I got that from the ER and a cardiologist renewed.

                  Several months ago my ear itched. I went to the sink. I could hear a screetching from the sink. Within 2 hours I couldn't sit in a chair without falling over. Sit on the bid fall over. By the end of the day, deafness in that ear.

                  The total lack of ability to stay upgright even when seated when away in a few days. Since then my ear pops and "drains" I've used a course of antiobiotics, and sinus wash. Same thing. It sounds man times like fluid going thru my ear.

                  That's where I am now. I called the neurologist I was working with that recommended me to the specialist. He got medicare to OK copaxone and I start soon as it comes in.

                  Still no lesion changes other than more than half of them have resolved, or gone away.

                  I'm now going on 5+ years of totally lost life where I can't do anything. I can't work. I can't drive. I can't go to the store most days if someone else drives. But I haven't been diagnosed with anything other than the MS. I called that office with the ear thing and I got "Sometimes, chance it goes away, chance it doesn't"

                  I know that's an incredibly long post and I skipped a few doctors as well. Just saw a rheumotologist. I didn't have a pic of the face rash. He showed me pics of hands deformed by arthritis and he said until your ANA comes back positive or you start looking like that, nothing I can do.

                  Comment


                    #10
                    I forgot to add. When I was dianosed with MS I asked about the heart rate, the breathing, and the rash and she said "Something must have got screwed up in your immune system when you had the corticosteroids".

                    And if that wasn't enough. Now when I give me insulin shot it's like trying to put a needle thru cardboard. I've bent insulin needles going into my skin. I had very soft skin. Never experienced anything like it in 40+ years of giving shots.

                    One denrologist said "use more moisterizer or put olive oil in your ears" since my ears feel like they're sandpaper on the inside.

                    The second did an ANA test and nothing. That was it.

                    Comment


                      #11
                      Originally posted by SNOOPY View Post
                      Hi NathanL.



                      This statement appears to indicate that you do not have MS. If you had testing that indicated you have MS you should take all of your test results to another Neurologist for another opinion.

                      There is a criteria by which MS is diagnosed, The Revised McDonald Criteria.
                      https://www.nationalmssociety.org/Sy.../Diagnosing-MS

                      It is not uncommon for MS to be misdiagnosed. If you search the internet you will find multiple articles about the Misdiagnosis of MS. MS does not cause skin problems. Breathing problems should be evaluated by a Pulmonologist who can test your lung function. I have breathing problems but it has nothing to do with MS, mine is due to Asthma that was diagnosed a few years ago.
                      I had lesions in the brain from the first MRI. I never took a full body MRI till I saw the MS specialist. At that time some of the brain lesions had resolved themselves. None increased and no new ones. I had lesions in the spine but I had nothing to compare when they started.

                      I had damage to the right optic nerve at the first MRI. Later MRI's had damage or were within normal limits. My eyesight changed and a new prescription fixed most of it back to 20/20. During the first attack I literally drove 100 miles to work. I held my hand up on my right eye and drove with the left eye.

                      When it first started I looked like what I imagine a typical relapse looks like. I went to bed, got up at 2am with a feeling of something stabbing me with fine needle in my back. When I would walk to turn a corner I had to stop, turn, then start walking again. I never felt dizzy even tho it winds up on every record. They put that down from my description of walking. Then I had the worst itch in the world. Right where my jacket hit my wrist on one side. I scratched at it long enough and hard enough I got thru the skin and into muscle and blood.

                      A week or more later I was walking down the hall and I was aggravated after I had to miss work. The wheels came off. I couldn't walk without the left leg buckling. I could still get from point A to point B but it wasn't pretty. My left arm had zero strength. I could move it, but I couldn't pick up an ampty coke can.

                      Oddly enough I mostly had zero pain. Not like now. When I had my first MRI and the neurologist gave me the talk about massive brain damage and you will never walk again that was the absolute worst day. It was a 45 minute ride home in total silence. The doctor also had a thing against women. He refused to acknowledge my mom when she asked questions. Until I re asked the question he wouldn't answer.

                      So left side no strength and buckling. The right arm is where I had the thing on my wrist and the arm where I may or may not have had shingles. I still feel it 5 years later there. Right eye small amount of change that was corrected with prescription change.

                      I'm at the point I wish they would at least TRY some other treatments for stuff it "might" be like lupus. But my ANA shows negative so they skip that. I had an enternist tell me you can't have an autoimmune disease if you don't have a high SED rate. I said what about diabetes, it's an autoimmune disease. He said "not really".

                      It's been 5 years of constant merry go round. Go to a neurologist who says "those aren't MS symptoms". Go to another doctor type and "That's common with MS'.

                      I'm out of options. I've managed to bankrupt myself and nearly broke my parents who are near 80 and should be enjoying retirement.

                      Comment


                        #12
                        NathanL,

                        Since starting Copaxone, then basically, you were diagnosed with MS, but are being told your symptoms are not MS or neurological, and other docs have no answers or are telling you MS? Did you tell the other docs that your MS doc said it is not MS?

                        It sounds like you have encountered docs with some of the worst bedside manners I have heard, as well as an MRI technician diagnosing. That is not usual practice.

                        I don't have much to offer. Still not sure why Copaxone was chosen from all the options out there. Did they review all the meds and efficacy with you? Was your diabetes considered in choosing a drug? I hope you have worked with the drug company for payment assistance given all you have been thru financially.

                        You also didn't discuss diet. It may be worth a shot with a nutritionist. You may find that removing certain foods help symptoms. It is trial and error. Not sure if you ever saw an allergist in your 75+ docs. But even without allergies, you can have food sensitivities.

                        I would guess all your meds/supplements have been reviewed for side effects and interactions at this point. If not, it should be.

                        The only other thing I can recommend is working on techniques to help with anxiety. There are lots of free online videos. Sometimes we may not get answers and have to learn to live with symptoms.
                        Kathy
                        DX 01/06, currently on Tysabri

                        Comment


                          #13
                          Originally posted by pennstater View Post
                          NathanL,

                          Since starting Copaxone, then basically, you were diagnosed with MS, but are being told your symptoms are not MS or neurological, and other docs have no answers or are telling you MS? Did you tell the other docs that your MS doc said it is not MS?

                          It sounds like you have encountered docs with some of the worst bedside manners I have heard, as well as an MRI technician diagnosing. That is not usual practice.

                          I don't have much to offer. Still not sure why Copaxone was chosen from all the options out there. Did they review all the meds and efficacy with you? Was your diabetes considered in choosing a drug? I hope you have worked with the drug company for payment assistance given all you have been thru financially.

                          You also didn't discuss diet. It may be worth a shot with a nutritionist. You may find that removing certain foods help symptoms. It is trial and error. Not sure if you ever saw an allergist in your 75+ docs. But even without allergies, you can have food sensitivities.

                          I would guess all your meds/supplements have been reviewed for side effects and interactions at this point. If not, it should be.

                          The only other thing I can recommend is working on techniques to help with anxiety. There are lots of free online videos. Sometimes we may not get answers and have to learn to live with symptoms.
                          The MS specialsit I've seen twice. The first her assistant went over history and did all the physical test. The second the actual Dr. said "It's MS looking at the MRI, I see the same here everyday".

                          At that point I asked about the heart rate, the breathing, and my eyes almost bleed liquid. Several times A day I have to clean my glasses from the inside due to the stuff coming out of my eyes. She said "Something obviously happened to your immune system when you had the corticosteroid infusion 5 months after your first MS attack". That was it. No referral. Nothing. It was 100% shared solutions problem now. At the time the only medication I was taking was insulin. The assistant took all my history and what I was taking. Two visits and I saw the actual doctor maybe 5 minutes total.

                          She said there are X drugs but you should take copaxone and it will help you avoid a relapse. Shared solutions will be in touch and if you have any questions they will answer them. That was it. End of story. "You have a very mild case of MS". That was it. She gave a prescription for 3 days a week copaxone. My insurance would not cover it so it was changed to 7 day a week shot.

                          I haven't changed my diet. Between the time of my first attack and when I had my corticosteroid infusion I lost 35 pounds. I was 6', 185 pouds down to 150 punds. Since then I've regained some of it and am to 165 3 years later.

                          The other neurologist that referred her to me is in the same hospital group. He was of the opinion pretty heavily it was not MS. I think he referred me because He didn't know what else to do.

                          I went back to him because he's 2 hours closer. He gave me a presription for 1 tramadol a day as needed for pain. 800mg Iburpofen. That's all I take other than the pill to reduce my heart rate. I only got the tramadol and ibuprofen because I complained about the non stop pain and eventually I said my sister or mother had given me a tramadol and it helped at least take the edge off. That's been it.

                          I contacted the MS specialist 6 months ago to ask some questions and such. I asked about the loss of hearing. I talked to the nurse. "It may or may not come back".

                          I contact him about a week about starting copaxene because getting it the first time two years ago was a dead end and the stress is really starting to stack up again. Eventuall medicaid approved the daily shot. I'm still waiting to here back on shipping and such. The first time shared solutions nurse came to house was a total dead end. The nurse never after 45 minutes wanted to move onto giving the copaxone shot. She was stuck on how I give my shot for my insulin incorrectly after doing it for 40 years. She went on and on and on. I said "MOVE ON and get to what you are here to do". I said that twice. She didn't. The 3rd time she said "Look, if you need "help" I can lay off hands and fix this for a fee". She was basically thrown out of the house. End of story.

                          Between the diagnoses of it's MS and take copaxone I've been to a multitude of doctors. At the time I had fantastic insurance that would pay for anything a doctor prescribed. Nothing. It was all the MS issues.

                          Now I have medicaid and have zero options. The only reason I get to see the original neurologist that referred me to the specialist is because I had seen them before going on medicaid.

                          I went to an endorcrinologist at the same hospital group. They could see me because I had been to a doctor there before going on medicaid, otherwise no. I wanted to get a prescription for my insulin. I've never had one. Never needed one. Insulin for 40 years I just paid for and it was less hassle than working it through insurance and I could afford it and ability to buy it anywhere.

                          She said nope. Only if you come back and go through a multi week class on how to give insulin and such. So a year later I'm still paying cash for my insulin. I can't go to an office 2 hours away that requires you to get transportation from 80 year old parents.

                          Every time I've been in 5 years I have never got a doctor to understand this. Let's try to take care of something now and plan a little ahead. I go, see doctor, take blood work. Blood work negative. Come back and take some more blood work. So that's 2 hours there and 2 hours back for my 80 year old parents. Rinse and repeat over and over and over.

                          I'm about done.

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