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Multiple Sclerosis

Discussion in 'General ME/CFS Discussion' started by bronxxed, Nov 1, 2017.

  1. bronxxed

    bronxxed

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    Hi Guys,

    I posted about my story a while back regarding a sexual encounter I had after which I've never been the same. The symptoms that have persisted over the course of two and a half years are: muscle twitching all over, pain that radiates from my legs to my arms to my hands, cognitive issues remembering, pressure headaches and constipation, almost as if it's very hard for me to "push" waste out of my bowels.

    The only thing that's suck out is the neurological symptoms. The other day I sneezed and a shooting pain went through my shoulder and arms, extremely painful and scary. My neck also felt pinched.

    I think I may have multiple sclerosis. Before this I was perfectly healthy. Within days of this encounter I developed the twitching, the week after pain came. Has been with me ever since.

    I plan to get an MRI and brain scan to figure out what's going on once insurance is available to me. I can't keep putting this off.

    Anyone else go through the MS scare? I should also mention I have HSV1 But this has never bothered me. When I first got sick I had my first big outbreaks but had had it for a while, so my immune system was definitely down. Labs two years ago low vitamin D, low ferritin, high monocytes. Saw an infectious disease specialist who tested me for everything under the sun, nothing came back.
     
  2. ljimbo423

    ljimbo423 Senior Member

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    Hi @bronxxed - I can't help but wonder if the sexual encounter was just a coincidence in timing and that something else happened that may have triggered CFS around that same timeframe?

    Jim
     
  3. TenuousGrip

    TenuousGrip Senior Member

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    I'm sorry for your lengthy and ongoing struggles.

    What kind of testing has your neurologist ordered and what kind of results/interpretations has that yielded ?

    I wish you all the best.
     
  4. ljimbo423

    ljimbo423 Senior Member

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    I also have something similar to this that happens to me once or twice a week. I sneeze and get a shooting pain though my upper back, arms,neck, shoulders and head.

    Jim
     
  5. bronxxed

    bronxxed

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    Hi Jim

    I don’t know if what I have is CFS. If I sleep enough I feel rested...not like before but not extremely exhausted. I weightlift 4-5x per week, although recovering has become a bit tougher with my new work schedule. It’s the PAIN and constipation that is debilitating. I ignore it as much as I can but deep down I know something is wrong with me. I kept wondering why nothing showed on blood tests...the woman I had the encounter with was HIV positive (didn’t know) but I wore protection. The only thing unprotected was an act of oral sex on her part for a brief second. (This is a nonrisk according to the experts).

    Anyway I got sick after. I was certain it was HIV. It wasn’t. If this is MS I can say though beyond a shadow of a doubt it is caused by a viral trigger. I was reading that HSV and low vitamin D in of themselves are thought to be triggers. Low and behold I had both at the time I got my blood taken. My original symptoms were WAY more severe, which in a way made me believe I was healing, because I don’t have some anymore:

    Blurred vision for 2 days
    Extreme pain and swelling in my lymph nodes under my arm pits
    Swelling in foot (for a day randomly)
    Chaffing skin on my penis (again random and this stopped)



    Idk what “virus” I encountered that’s caused my immune system to go haywire (didn’t get HIV) but ever since my gut health has been messed up and these neurological issues are just present. It’s depressing because I can feel ok but just know my body is off.
     
  6. Jesse2233

    Jesse2233 Senior Member

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    Hmm you've likely thought of this, but given that she was immuncompromised you might have picked up an exotic opportunistic infection that took root in your central nervous system and/or triggered autoimmunity.

    Have you ever been treated with anti-microbials or immunomodulators?

    Has an MRI been done to assess MS?
     
  7. ljimbo423

    ljimbo423 Senior Member

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    I worked in a warehouse, walking 4-5 or more miles a day and moving around fairly heavy boxes, for a couple of years with mild CFS. I didn't know it at the time, but looking back, it's clear to me now. I didn't even notice fatigue but I had the fibromyalgia-like pain you are talking about.

    Viral triggers for CFS are extremely common.

    Have you looked into dysbiosis and intestinal permeability (leaky gut). I believe the gut is the root cause of both fibromyalgia (aches, pains, gut dysfunction, cognitive impairment, etc.) and CFS. I am making good progress treating my gut and I have both fibromyalgia and CFS.

    Jim
     
  8. bronxxed

    bronxxed

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    Actually Jesse I’ve never thought of that. Wouldn’t my immune system have had to been compromised as well for an infection like that to take place? Now that I think about it she had mentioned having had surgery in her mouth from a tooth she had to get pulled.
     
  9. bronxxed

    bronxxed

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    I’ve never done an MRI as I thought the issue would be found within my blood. It didn’t occur to me I might have MS until I kept hearing it coincide with constipation, which is a symptom nobody else I’ve known with CFS has said they have. Constipation is really common with MS as the muscles that move thing along aren’t working correctly. That was a big red sign for me which made me think I might have MS. At the moment my insurance is out and I have to wait a while to get it renewed to do an MRI.
     
  10. ljimbo423

    ljimbo423 Senior Member

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    Actually there are many, many people with CFS that have constipation. Constipation, diarrhea and irritable bowel syndrome are extremely common in CFS. Here is a link to a search I did here at PR for constipation in the titles only. http://forums.phoenixrising.me/index.php?search/44360893/&q=constipation&o=date&c[title_only]=1
     
  11. frederic83

    frederic83 Senior Member

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    Prevalence of IBS among pwME is around 80-90%
     
    ljimbo423 likes this.
  12. drob31

    drob31 Senior Member

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    Sounds like EBV invading the CNS.
     
  13. bronxxed

    bronxxed

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    Hi Rob,

    When the infectious disease specialist took my blood the only thing that came back was extremely high antibodies to EBV. They were called EBNA I believe.
     
  14. Learner1

    Learner1 Professional Patient

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    EBV can make you very sick in many ways and destroy your health. Did the ID specialist put you in an antiviral, like valacyclovir, valganciclovir, etc.?
     
  15. bronxxed

    bronxxed

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    No he didn’t. He didn’t feel as if there was anything wrong with the results. I was so happy I didn’t have HIV I didn’t inquire about anything else I just ran home and cried.
     
  16. Learner1

    Learner1 Professional Patient

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    EBV has led to ME/CFS for some of us, autoimmunity in others, and has even been linked cancers. It has made me very ill.

    Worth treating.
     
  17. bronxxed

    bronxxed

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    Jim,

    You mentioned treating your gut for symptoms you’re having currently. I believe the same. I think the answer is in the gut and the healthier it is the less your symptoms will crop up. What do you do for your gut health?
     
  18. bronxxed

    bronxxed

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    It’ll be hard convincing my doctor to give me antivirals for long term therapy if he’s convinced EBV isn’t what’s bothering me. In fact he’s convinced this is all in my head (even though I’ve never been an anxious or manic person). I only started feeling this way because my symptoms are real!

    Should I just tell him that I’ve been getting nonstop cold sores ?
     
  19. ljimbo423

    ljimbo423 Senior Member

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    I agree completely!:) Basically a low carb diet, herbs to kill off the bad bacteria, probiotics and supplements to heal the gut like glutamine and colostrum. My health has improved significantly on these supps and continues to.

    Jim
     
  20. Mithriel

    Mithriel Senior Member

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    I know a lot of people with MS and their main symptoms are nerves just not working. They talk about holding a cup then it just dropping or standing up and their legs giving way. They have a cotton wool feeling in their muscles. Gut problems do happen but their first attacks are usually more like pressing the buttons on a remote control and nothing happening. Others are referred by an optician because of eye problems.
     

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