• 2 months ago

    Can anyone relate?

    I am 33 yrs old. My body is getting worse every year (usually around this season). My mom was diagnosed with MS in the 90's but hers is not progressive. I have seen multiple doctors for multiple things and no one knows what's wrong with me. I'm not a hypochondriac and believe that all of these things are related, not separate problems.

    Everything escalated in 2011 when I was diagnosed with optic neuritis. I had just had my son (4th child) in Sept of 2010 before experiencing a 6 month localized headache. After 6 months of suffering from the intense pain in my left eyebrow, I realized I could touch it and trigger the pain in a specific area. My doc gave me a low dose steroid and it went away eventually. Around this time, I began experiencing sensations of water dripping on me...like water dripping on my arm or the top of my foot. I'd go to wipe it and there was nothing there.

    2012 began the "pulling" searing pain in my neck (down into my back), the tops of my hands and the tops of my feet. At random moments without warning, it feels like an electric shock sensation "pops" and is followed by a hot sensation. Sometimes it feels like a tendon gets "hung up" and snaps. It's frustrating esp when I'm driving and just "looking both ways" or turning to talk to someone. I go through several months with no episodes but typically when they come back, they are frequent, unpredictable and last a few months. That same year, I lost all feeling in my right hand - my pinky, ring finger and half of my palm up through my thumb - which felt like pins and needles half of the time and a dead hand the other. I also started to experience my left hand falling asleep. I could not grip a pencil to even write like normal. I also had a very hard time going down steps because of my knees. My doctor ordered a CAT scan of my head to see if there were legions. It came back mostly clean with the exception of one spot which was inconclusive. I was referred to a neurologist who did nothing for me (he barely spoke to me, just pulled on my arms, banged on my knees and I left). He ruled out MS because I could touch my chin to my chest without triggering any pain. By this point, they decided my hand issues were probably carpal tunnel. The feeling in my hand began to return after a year. For the most part, most of my symptoms were gone.

    Come Fall the next year, they returned along with very irregular and heavy menstrual cycles which made me anemic. in 2014 my bladder problems began, along with mild digestive issues. I began getting UTIs quite regularly despite my efforts to avoid them. These moved quite quickly into my kidneys, hospitalizing me with a double kidney infection and potassium deficiency. My doctor ordered a cystoscopy to make sure I was able to completely empty my bladder. Everything came back normal.

    At this point, everything began to occur at the same time. The pins and needles in my limbs, twitches and spasms in random places including my face, back, legs, and hands; numbness, bladder infections, stomach problems, shocking sensations, joint pain. Then, they'd subside for months.

    Last year, I developed a very stiff neck and sciatica in both my neck and lower back...sometimes at the same time. I thought I had just slept wrong but a year and several chiropractic adjustments later, it's still stiff and painful and I don't have to be doing anything for my sciatica to flare up. My husband and I were in the store one day and my sciatic nerve in my lower back sent a searing sensation that caught me off guard (I wasn't moving, just standing there talking) and my husband caught me as I began to fall. 2016 I began struggling gripping with my hands again. My doc ordered a test for arthritis which was negative. Only days later, I was sitting on the couch when my right thigh and calf muscle cramped immensely causing me to jump up and I couldn't walk...the calf felt like it could have been a blood clot, which scared me and concerned my doc so she ordered an ultrasound of my leg. It came back fine. That September, I was exercising like I always do and 2 days later, both of my wrists felt fractured. My left wrist healing within a few months while my right wrist got worse, sending me yet again to the hospital. Xray showed no break but they couldn't rule out a hairline fracture. My right wrist is still sensitive and requires a brace from time to time, especially while I sleep.

    I began getting very sick every time I would eat and became severely constipated regardless of how clean my diet was. I have never struggled with irregularities at all. My doc referred me to a gastro doc who diagnosed me with IBS and introduced me to the FODmap Diet. This diet cuts out fermenting foods to avoid bad gasses in the stomach. This helped but did not correct the constipation or fullness. To this day, everything I eat won't digest properly or break down. I eat no dairy, no gluten, very little sugar or starchy foods and only drink water. I even tried a 15-day colon cleanse vitamin and couldn't use the bathroom at all by day 4 and the cramps were unbearable.

    This year has been the worst. I now suffer with all of these things plus bladder and bowel issues and can't eat anything without getting sick. Within the past few weeks, my face "contracts" (tightens starting in my nose then intensifies over my whole face from my nose upward and subsides) and I can't put my head down too far without experiencing an electric shock sensation shooting down my neck to about the bottom of my shoulder blades. At random moments lately, my whole back tightens and I can't move until it subsides. It feels like an intense "contraction". I recently developed neuritis again. My continued menstrual problems led me to an appointment with my gynecologist. She did an ultrasound to find that my uterus is flipped and I have a fibroid tumor which is causing the anemia and heavy bleeding. She said the constipation is a result of my uterus putting pressure on my rectum so she scheduled me a hysterectomy but I am going to cancel it on the advice of my family doctor. He says a uterus cannot cause that kind of restriction.

    I'm the lead singer of a rock band. On the last 2 shows of tour in September, I forgot my lyrics in the middle of the songs. During both trips, there were bouts where I was trying to talk to friends or fans and knew what I was trying to say but I couldn't get my sentences right or think of some of the words. It became so frustrating that I stopped talking altogether.

    I had a really rough trip to a particular festival in September. I pretty much stayed in the van all day until we performed that evening. I had a burning sensation in my stomach, couldn't walk a straight line (dizzy, fatigue, loss of balance....but I didn't eat much that day due to stomach upset). I took 6 tums, 2 gas-x pills and an over the counter nausea medicine that day..nothing brought relief. It resolved on it's own after 3 days.

    Yesterday morning, I woke up feeling like my gut was on fire. I couldn't wait for my husband to come home so I drove myself to the ER. The pain intensified and subsided every 5-10 minutes and made me very nauseous as well as sending a searing pain through my lower right back. This went on for 6 hours and I literally wanted to die...or cut my stomach out! They checked my blood and urine, did an ultrasound of my gallbladder, pancreas, liver and kidneys. Everything came back fine so they concluded that it's probably just the IBS.

    My doc is ordering a scope to see my stomach and check for celiac, ulcers, crohn's etc. It very well could be one of these things. I came home from the hospital yesterday and experienced loss of bowel control. I soiled my pants and didn't realize until it was too late. I did the same thing this morning which is why I decided to post here. I'm so embarrassed but desperate for answers. I have been constipated for a year and now I have diarrhea (which could be a side effect of the IBS meds they gave me. But, my doc said it would take 2 weeks to take effect...it had only been 2 days).

    Obviously I don't WANT a disease of any kind! But I'm tired of going between different specialists to be told there's nothing wrong with me. I want answers so I can start an effective treatment plan. I'm 33 yrs young and this has only been effecting me for 6 years...I want to get ahead of whatever it is. I have 4 kids who depend on me and I've always been very active and lead a healthy lifestyle. Thank you for taking the time to read my story and give any helpful advice.

Responses

  • 1 month ago

    RE: Can anyone relate?

    I can relate to a lot of your issues but not all. I am too trying to find out what is wrong...all my symptoms are similar to one who has MS or the like but they cannot find a thing wrong. Its been since 2011 for me & I just live day by day. I have some tummy issues but nothing severe. I think you should look into the GYN & talk to that doctor again. You can feel very sick if you have issues with any of your female organs. It can cause A LOT of pain & A LOT of side effects like constipation. I would trust your GYN or get another opinion. I feel your pain & would love to just know I am not crazy & that there is something wrong but so far no doctor can help me.
      • 1 month ago
        Please go to knowthecause.com

        Also there is a TV program called Know the Cause. Look it up on your cable network or satellite. It saved my life!

        I had so many of your problems.....so many like yours and this saved my life by the grace of God! I will keep you in my prayers that God will show you the answer as He did for me.
        jancie@sbcglobal.net
        If I can answer any questions please feel free to e-mail me.
      • 1 month ago
        I agree with you!!!!
  • 1 month ago

    RE: Can anyone relate?

    Please go to knowthecause.com

    This saved my life by the grace of God.
    I had so many of your problems and I had a miracle through this.
  • 1 month ago

    RE: Can anyone relate?

    Dear Lead Singer, I've read your letter twice and I will try not to bore you. I'm going to share something's I feel I have experience in. I agree with your gynecologist. Unless you want more children there is no reason not to get a hysterectomy.(my option). I'm assuming there is more to why your family doctor's advise. Now this I know about. If any part of your blood work is not with in limits you can have all kinds of problems. Now I really hope you take my advise on this matter. I can have one bout of diarrhea and my potassium becomes low, and it will cause all kinds of havoc. I have learned to watch mine. I think your age is a deciding factor in some of these specialist diagnoses. You didn't mention whether you take any kind of medication. Some meds will cause a lot of trouble. If you are some one who will not take even take an aspirin you might need to rethink that. I assume that you play a string instrument. If so you very well my have carpal tunnel. If so, get it fixed. And if you been playing for long it's worth going thru the surgery. (But don't do the Brown procedure unless your doc has one foot in the grave.) I hope I don't get in trouble for using a brand name so to speak of. I have bowel problems but mine is caused by bariatric surgery. Last thing I want to say. My sister went through some of the same symptoms of electrical shots all over her body. She too was sent for a scan of her brain. Same dx, but one or two more legions. The rest of her workup came back low potassium. I also have read different articles trying to figure out what my symptoms could be. Fibromyalgia fits sometimes. So far the med they have given me is Lyrica. Works but causes other problems. I really hope you find the help you need. Take care.
  • 1 month ago

    RE: Can anyone relate?

    I'm sorry for what you're going through. I had/have some of your symptoms. Here are my 2 cents:
    * MS affects everyone differently. You may/not have it.
    * UTIs/bladder infections: I have had success with cranberry tablets (I like TruNature brand at Costco)
    * Some meds can destroy part of your intestines (diarrhea, leaky gut). A gluten-free diet has helped me. Hopefully, it's temporary.
    * Sugar: causes inflammation that seems to turn a regular irritation into a fireball of pain for me.
    * Nightshades: a type of plant/flower that can cause an allergic (?) reaction (bowels) to seemingly harmless foods that I had eaten my whole life (tomatoes, potatoes, peppers, etc.)...& yes, that includes fries & ketchup.
    * I try to stay as cool as possible...keeps the inflammation at bay...& eyes performing properly.

    I wish you the best in all of this. I depend on prayers, good thoughts, and positive energy!
  • 1 month ago

    RE: Can anyone relate?

    You may want to consider an evaluation at the Mayo Clinic. They will look at the total picture of your symptoms. My prayers are for you and accurate answers.
  • 1 month ago

    RE: Can anyone relate?

    Yes - I can relate. I too have had the pain behind the eyebrow that becomes too intense for words. I also have the "water torture" feeling of someone dripping something on the tops of my feet. Neither of these items has been resolved by my MDs. I also have bouts of losing feeling in my hands or having them "fall asleep" - or perhaps going into a coma is more apt. The MDs just shrug their shoulders after checking my heart and vascular system and finding no problems that they expect to find. I am also a musician who plays stringed instruments. When one MD tried to claim my problem was carpal tunnel, I nearly used my guitar as a club to convince him he was mistaken. Unfortunately, I find that MDs will always jump to the easiest response when they're stumped rather than looking deeper.

    That being said - YOU are in charge of your own diagnosis and treatment. The MDs work for you - not the other way around. Don't accept the easy response and if you have to talk to 10 different MDs, just do it until you get the help you need. I also had a neurologist that said I couldn't have MS, but I insisted on trying an MS med. When three weeks later my symptoms subsided I once again picked up the guitar and dared him to tell me it was just a placebo effect.

    I have found that controlled breathing exercises help to manage vascular inflammation and decrease the "water dripping" feeling. Gentle massage, stretching and VERY light weight lifting exercises help to ward off the "falling asleep" of the hands and forearms. I find that the problems with lyrics and speaking is a slippery slope. Once the problems start, I too stop talking until I can calm down and compose myself. Again - breathing exercises help quite a bit.

    On the IBS side, I'm afraid I can't assist aside from saying that diet is key to both these symptoms and IBS. Ironically, I had IBS until my MS issues started and they have abated for the most part. I'm happy not to deal with that, but the price is a bit steep.

    Keep looking for alternatives - keep asking questions - and don't accept easy answers - I know it's hard, but try to stay positive. Others CAN relate. We just don't have the answers yet.
  • 1 month ago

    RE: Can anyone relate?

    I knew someone who clearly had signs of MS, like you. But she had no lesions on her brain or spine. Her docter fully believed she had MS so he started her on MS medication an interferon I believe. Later they did another MRI & the lesions were there, small but there. So, she credits her doctor for them being so small, because she believes they would have been larger if had not started her on a medication when he did. You need to shop around for a doctor that has special training in MS. The fact that you had any suspicious spot on your brain "is suspicious". Hope things get better for you
  • 1 month ago

    RE: Can anyone relate?

    I too have read and reread your post a few different times. I am 36 yrs and have been experiencing the majority of my symptoms for 4 years, and looking back, even have some symptoms that I started experiencing in my early 20s. We have a history of Ms in our family on my dad's side. His mom had it very severely, my aunt and uncle (his brother and sister) also both have me. I know there are different kinds of Ms, as I often compare notes with my aunt over her symptoms and those that my grandmother went through. Some are the same, some different. All the same, I have some of the more severe symptoms in our family and yet I have yet to find a doctor to take me seriously. I too have been diagnosed with anything but Ms, starting with carpal tunnel, fibromyalgia, neuropathy, and diabetes..even with the added bonus of my doctor accusing this all of being in my head, until she saw my hands lock up. Yet I still am not entirely taken seriously by doctors.
    I don't know about the water dripping sensation, but I often deal with long lasting headaches/migraines. I have a horrible sensitivity to hot and cold... hot is an absolute no go...and cold is ok, as long as it's not freezing, yet being outside during the winter for 20 minutes or longer causes swelling. Cool showers are my only option. I have times when my hands completely lock up... sometimes it's painful, sometimes it's just there (figured out on my own that there were spasms contracting in my hands for this). I almost always have a tingling sensation...and then I have times of numbness or what I refer to as electric shock running through my feet, arms and legs, often cramping up the muscles, causing no use or limited use of that limb. I have experienced sensations of pressure in my head that makes me feel like a newborn baby (like my head is too heavy to hold up) but if I lean back on pillows or in a chair, the pressure triples in the area touching said pillow or chair. On and off lack of bladder and bowel control, eye twitches (which we've started to recognize as starts to flare-ups), neck pain, back spasms, I could go on and on... And yet not getting anywhere with doctors. I have even experienced a seizure this year and stroke like symptoms (droopy face and everything), yet these don't get called what they are...they are just un-named episodes.
    I hope you find the answers you are searching for... And although I'm sure my story doesn't help you find a diagnosis, as I really don't have one myself when doctors keep retracting them, I just want you to know you aren't alone in your struggle.
    My doctor told me once that I couldn't have Ms because I have so many symptoms that don't follow the normal protocol... It's not going by the textbook rules... I told her that in every case of Ms there is always something different than someone else and it's time to think outside the textbook.
    I encourage you to research and do some reading on your own as well.
      • 1 month ago
        I also wanted to add that my biggest problem with doctors taking me seriously is that every MRI, cat scan, x-ray, lab test they have done in the 4 years of me going through all of this have all come back fine except for a low vitamin d level and the discovery that my retinas are thinning ...which has caused for many changes in my vision in 4 years. And I too experience the memory loss/freeze thing... Even forgetting names to friends. It's very frustrating!
  • 1 month ago

    RE: Can anyone relate?

    I am a 56 year old male and got my diagnosis of having PPMS in September of 2015. Since being told of what I've got, I no longer worry about my symptoms!
    Every one of your pains in every part of your body, I have in mine. ( Even though our body parts are different. )
    Someone else on here told you that every body's MS is different, even if it is the same type! This is true.
    One Doctor told you about putting your chin on your chest and not feeling pain means you haven't got MS!...........,everyone is different. I can do that and not feel pain.
    For years, ever since I had an accident in my early twenties, I have suffered with back pain. Pretty much since that onset of accident, pain and medication, my life has been the same! One long roller coaster ride of pain from silly twists and awkward turns, which each time has got slowly worse. Each time the recuperation time has got longer.
    The last major awkward silly fall laid me up for over a year!
    Needless to say my employer then did everything in the book to try and get rid of me! I even took them through industrial tribution to win my job back on the grounds of unfair dismissal under the employment disability rules of 1985 (I think that's right) because they didn't even try to find me a role with in the company that could fit my needs . After all, the accident was at work and it was proved it was their fault!
    Anyway, they "made up" a job for me but a year later cutbacks meant that I was one of the jobs that was unnecessary!!!!!!
    Then when I was on JSA looking for work while not being able to walk very well, someone approached me and explained why my inability to walk properly would hinder my chances of employment and that I should probably go on sick!
    It was then because of that person going out of her way to talk to me and explain various things(which other people either did not know, care about and couldn't be bothered to do the paperwork for!)that I was led down the path of doctors, specialists and finally the MS specialists.
    During the upheaval years I tried to commit suicide on 3 occasions. This was because no one seemed to want to do anything for me! I was pushed from pillar to post. Accused of being lazy and not wanting to work! Even falsification of symptoms!
    Now that the diagnosis is here, people look quite silly!
    Since 2010 with my bad back( 2slipped discs) and a hiatus hernia and now this life sentence which is PPMS being on tablets for the rest of my life while my body functions get ever so slowly.......and then quickly worse, well I have come to terms with it!
    I'm sorry about burbling on and boring you but I just wanted to say that every single symptom that you have displayed, I have also. Since diagnosis my medication keeps me on a sort of level playing field.
    I have good days and bad days.
    Knowing what was causing me all this agro seems to have put my mind at ease.
    I hope you find the person who will make the difference to your life.
    I will never forget the woman who changed mine!
  • 1 month ago

    RE: Can anyone relate?

    Have you investigated a diagnosis of Lyme disease? It is very pervasive and creates multiple problems, especially if not treated....
  • 1 month ago

    RE: Can anyone relate?

    Dear searching for answers: I've had all that you've spoken about and I can understand just how frustrating it is to go from one specialist to another. I've also had MRI's to rule out MS. Although it would bring comfort to think you have MS so you can get answers, by now they would have found evidence to support that dx. I would first start with the stress you're dealing with; you're on the road and have 4 kids, enough said. Next I would start with your diet. Get off of all the processed crap and start back at the beginning introducing rice only. The third step would be a pain management doctor in conjunction with physical therapy. Keep up with your OBGYN, get a colonoscopy and go from there; you'd be surprised what you body is trying to tell you.