Newly diagnosed... but does it sound right?

Posted , 6 users are following.

Went to doc today with what I thought may be a blood clot.  Pain in leg (entire leg) for two days and today a hot red spot on my leg. 

Doc says it's Shingles.

She (and the web sites I've referred to since coming home) kept talking about the localized pain and burning of the rash itself.

BUT I have no pain on the rash.  I would not have even known it was there if I did not see it.  It is a little bumpy but no blisters as of yet.

The pain radiates through my entire leg... no one central point.  From knee down to ankle.  A dull ache sometimes, entense throbbing others.

Does that sound like Shingles?  My skin doesn't hurt - - it feels like my bones hurt (if that's possible... lol).

Thanks in advance for your thoughts. 

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  • Posted

    If the doctor feels it’s shingles, he or she I believe would’ve prescribed an Rx such as valacyclovir for a number of days to hopefully prevent post herpectic nueralgia or PHN. Blisters usually follow diagnosis of shingles. If taken within a certain timeframe after diagnosis of shingles, an Rx like valacyclovir will help in preventing PHN. You also want to discuss the new shingles vaccine Shingrix, which supposedly is 90+% effective in preventing shingles or preventing the return of shingles. Whatever steps you take, be sure you thoroughly discuss your shingles case with proper medical providers, especially one that has extensive experience in treating patient with shingles. Do not wait. Take action quickly. Best of success and look into the new shingles vaccine Shingrix.
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  • Posted

    Hi Jill. I'm not a doctor or nurse but that doesn't sound right to me. Blood clot or possible Cellulitis maybe, i dont know but sounds like you need a second opinion and don't delay. You surely know the dangers of a blood clot. Cellulitis can be treated with antibiotics but dangerous if left untreated. Shingles is treated with anti-viral meds and not fatal but you don't want to delay treatment or it can worsen very quickly. BOTH conditions can worsen quickly, if left untreated. An active shingles rash is usually undeniable when you touch it. Imagine the pain of a cattle prod when touching a spot no larger than a quarter. However, you can get the bumps first and later the blisters. And for most, the pain IS their first clue. That being said, shingles DOES come in different forms, for different people.

    Like I said, i'm not a doctor or nurse but if you are not comfortable with that diagnosis, i would be getting another opinion because if their wrong, it is you that suffers. Hope you feel better soon, friend

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    • Posted

      Thank you r.f.

      This is the same medical association that gave me a c-diff diagnosis based on a CT-Scan only.... put me on 14 days of antibiotics.  Later it was determined (through stool sample) that I never had c-diff.  The antibiotics did help with the inflammation of my colon (cause unknown) - but still - they had me in a panic.

      The rash doesn't feel any different to the touch than the rest of the skin on my leg.  The pain is internal not external.  I tried to explain that to the doc who diagnosed me almost immediately.

      I'll try to get a second opinion tomorrow if the pain I am experience  (vs the pain I should have with shingles) doesn't change.

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    • Posted

      Bless your heart. I'm sorry to hear that, Jill. Sounds like you've had your share of scares. It may turn out that you have true shingles, as it can be different for all of us but in the end, you are a person, who deserves to have confidence in the diagnosis given to you. I've been there myself, friend. One week before i was hospitalized for shingles in my right eye, i had an infectious disease doctor tell me it was most likely PTSD...from what, he had no clue. This was the 4th specialist i had seen in over a year. Their misdiagnosis and the delay nearly cost me my eyesight and left damage to my 5th cranial nerve. Thankfully, i did find a very good doctor who actually shut up and listened to his patients ...amazing concept that MANY should try using with their patients, as we are not cars and they should not be trying to act like shade tree mechanics. It is YOUR body and you deserve to feel comfortable with your treatment AND your diagnosis. You do what makes YOU feel comfortable. Also, if it is shingles, then the best news yet is this new shingles vaccine "Shingrix". It has a whopping 97% success rate and that's huge for a vaccine. I've had both doses of the vaccine myself and it gave me my life back.

      I do hope you get to feeling better soon and also get your prompt diagnosis with firm data to back up their professional opinions. You take care, friend

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  • Posted

     yes that is shingles. That is the identical case that I have and have had for the last eight years. I also never had pain in the actual rash and fortunately for me my rash never blistered, however the pain was up and down the entire leg and  it was a little bit of pain in that rash area but it didn’t last long. The pain now years later is in my hip and my lower back so be prepared for that pain to move up and down one side of your body. Antivirals and rest. Stress reducers are also big.  Also just to let you know, I now so many years later don’t get the rash on my leg anymore now it’s all just internal pain in the leg itself.   That’s precisely why it takes so long for doctors to diagnose us,  there are no rule books on shingles.  Good luck.
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    • Posted

      WOW Deborah - - 8 years? ?

      I was looking at other forum topics here and was so surprised to hear of long duration issues like that as well as recurrence.  My doctor never said anything about that today.  sad

      I appreciate everyone's help.  I will probably be in here a lot the next few weeks.  I've actually got a week vacation at the beach planned starting this Sunday so I hope salt water and sunshine doesn't make things worse!  smile

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    • Posted

      Jill I forgot to tell you to take pics of the hot spots and keep them handy. It’s helpful in the future should you have this again and again. I also forgot to ask you if the spot was itchy?  First time I had shingles was 20 yrs ago and it was a small red spot on my right side of my spine. It hurt like hell but never blistered. It came and went for 12 yrs and then the red spot showed up on my calf and that is when I was so sick for so long and sometimes bedridden. I know have epidurals in my L5 to help numb the pain in my hip, leg and lower back. It’s temporary relief but I’ll take it. I had the shingrix shot, both of them, it’s def seemed to help but my hip pain is back this week. I don’t want to believe it’s shingles but it’s certainly pointing in that direction.  This is when it’s hard to tell because I don’t get the rash very often anymore. The way I know is the hip pain lasts for weeks and nothing helps lesson the pain. Usually exhaustion follows but I haven’t had that part yet. Again I wish you luck and hope you enjoy your vacation. 
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    • Posted

      Jill,

      Some people can confuse sciatica with shingles pain, as they are both neuralgia. I would definitely get a second opinion.

      If vesicle-blisters have not appeared, and your skin does not feel like it is burning and painful to touch, or at least itching, it is not shingles.

      Merry Juliana

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  • Posted

    Jill,

    A few questions regarding risk for blood clots. Have you traveled recently on long plane trips or car rides? Are you on birth control pills or hormone therapy? Have you had any recent surgery or given birth recently?

    Where exactly is the hot red spot on your leg?

    How old are you?

    Do you have a headache, photophobia, fever, chills sweating, fatigue, malaise, exhaustion, and or generalized aches and pains?

    Usually, with Herpes Zoster-Shingles, the pain and rash is preceded by some of the above symptoms!

    You usually feel a burning, lancinating, pain, constant, only in the area where the rash will appear, or slightly larger. It is a Neurogenic pain. The rash will appear in crops of vesicle-blisters on a red base over a period of 5- 7 days on a dermatome.

    To distinguish Herpes Zoster-Shingles from a deep vein thrombosis or blood clot, the patient's history should be asked of the initial questions.

    Since your leg is hot, look at it and compare it to the other and see if it is more swollen than the other. Usually, with shingles pain, we don't feel a throbbing pain.

    I am concerned with your pain description and hot red spot that you have either a DVT- blood clot or cellulitis.

    I would go now to an A&E. The Physician could have done a D-Dimer and CBC and imaging to evaluate for a DVT or cellulitis. The problem with a DVT is that the clot can travel to your lungs. The problem with cellulitis is you can become septic, fast. Either can kill quickly. As you feel something is wrong, obey your instincts and get it checked out now.

    I am a Nurse Practitioner in the States.

    Please let me know what happens. Vi shall be thinking of you.

    All my best wishes.

    Merry Juliana

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  • Posted

    THANK you everyone! ! 

    In the last 24 hours  - -  based on my level of pain and discomfort (which as accelerated GREATLY in that time) and reading all these posts I do finally agree that I have shingles. 

    The rash still doesn't hurt to the touch but it is getting bubbly.... and the deep pain in the leg is like nothing I've felt before.  I'm no longer afraid of it being a blood clot.   My ex-husband was hospitalized (Intensive Care) for a week with a DVT and pulmonary embolism..... so when this first started out a few days ago it reminded me of what he went through but since then the symptoms don't appear to be the same.

    I am very glad that if I had to have it at least it's on my leg during summer (short and skirt) season.

    I've got a week vacation at the beach coming up - driving out on Sunday.  I guess it's better than having to work while dealing with this.

    Thanks again everyone! ! 

     

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