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  • #21470
    everymoment
    Participant

    Hi Everyone,

    I have had four melanomas and all stage 1 minus a vulvar melanoma that created a lot of confusion about staging (last thought the depth was 1.75) I had a stroke at 35 and they can’t figure out why. I’ve been to a neurologist, cardiologist and an infectious disease doctor and no one can figure out why I’ve had a stroke. The stroke was small so they said I should have zero impact. The MRi of my brain showed the stroke. I had a ct of my head and chest and nothing came out of that.

    These are the odd symptoms I’ve been having for the past two months.

    – Numbness, tingling, pins and needles all over body

    – Whole face would feel tingly – both sides

    – Weird sensations/feel disoriented

    – Notice that my memory is not that great – can’t remember what I’m doing the moment before or what I was about ready to do.

    – Shortness of breath – comes and goes

    – twitches in arms and legs

    – left hip pain

    – low grade fever

    – toenails now have horizontal ridges

    I’m starting to wonder if I’ve progressed to a different stage. Does this sound familiar to anyone? Maybe I’m just being peranoid but all this stuff has impacted my life and no one can figure out why!

    Thanks.

    #61916
    Craig_G
    Participant

    My only suggestion is to go to a Mayo Clinic as soon as possible. I’ve had some weird problems and they figured it out.

    Good luck!

    #61917
    everymoment
    Participant

    Thanks. I just found out today that my blood work from Monday shows me being anemic. That is new too. Something is going on.

    #61918
    Catherine Poole
    Keymaster

    Welcome back! I’m sorry to hear all that you have been through. I agree you need to go somewhere of excellence to get to the bottom of these symptoms. If you are worried about brain mets, you should have seen them on the brain scan. So I am wondering if it is melanoma related. Where do you live? MAYO is good, but we can suggest other possibilities too. Take care!

    #61919
    everymoment
    Participant

    Thanks for the reply. We have ruled out brain mets but the thought by the doctors is that there could possibly be melanoma in my body. If there is an active tumor then it could have caused the stroke and I have read that a cause of anemia could be cancer. This may be coming together in the perfect storm.

    I went back and looked at the different interpretations of the melanoma on my labia and the review from Duke said that it favors invasive melanoma. Maybe I have been to way to passive and I should have been getting scanned every year.

    I have Duke near by so that would be my first option.

    Thanks for your thoughts.

    #61920
    spinsanity
    Participant

    Hi, Spin here.

    I wasn’t expecting to post today, but some of your symptoms sounds like a possible panic attack(s). I have had quite a few, both before melanoma and now. Tingling in the face, the racing heart, numbness in my hands, and just a general sense that something is very, very wrong and I may just die here on the spot.

    Panic attacks where my cause of some of the symptoms you related, I hope it is the case with you too, since it seems to be a easy fix.

    Regardless of what is causing your symptoms, I do hope you find a good shrink (not just your primary care or oncologist) that can give you a few meds and talk therapy (even group therapy too) to help cope with what your going through. It really does help to a certain extent.

    Do ask your physicians if some of your symptoms are fear/panic related.

    I’m glad they spotted your anemia, the fewer the symptoms the better.

    As usual, best of luck, and I’m looking forward to you giving updates on your progress toward fewer and fewer tumors!

    Spin :ugeek:

    ps, coming up on two years on Z for me, I’m still tumor free for now and yes, I know I’m getting lucky.

    #61921
    everymoment
    Participant

    Hi Spin,

    Thanks for your reply. Yes, I can see how some of these could overlap with panic issues. However, the only reason I starting getting concerned was because these symptoms started happening out of the blue. I was perfectly relaxed before all of this and then these symptoms started happening. Now my stress is higher then it should be.

    It would have been nice if the doctor had said anything about how to treat my anemia! She just said your anemic and we will discuss it further on your follow-up visit in a month. Seems like a long time not to do anything about it!

    A therapist is always a good idea.

    I’m really glad you are tumor free:)

    Isabell

    #61922
    BNP68
    Participant

    Isabell,

    I’m curious who you are seeing at Duke. I saw a couple oncologist there and had both my surgeries there with Dr. Tyler.

    Isabell, I don’t want to sound too much like an alarmist but I wouldn’t wait a month to address the anemia. I think you mentioned previously that this is something not normal for you so I think you really need to push your care providers to find the root cause. You might want to do a search for “blood in stool” on the MPIP forum to see my road to discovering the cause of my anemia. It was quite a journey with a least a half a dozen scans, colonoscopies, and endoscopies before finding the culprit.

    Stay positive and stay in charge.

    Brian

    #61923
    everymoment
    Participant

    Hi Brian,

    I only see a dermatologist at Duke. Did you feel good about the treatment you received from Dr. Tyler?

    I spoke to my regular doctor this morning who ran the CBC and she said that I was only slightly anemic and that we would recheck everything in a month. She did not seem alarmed. Why am I the only one who seems alarmed!!!!!

    My PET/CT is scheduled for this Wednesday. I don’t want to light up!!!!

    Isabell

    #61924
    Eos99
    Participant

    everymoment wrote:

    These are the odd symptoms I’ve been having for the past two months.

    – Numbness, tingling, pins and needles all over body

    – Whole face would feel tingly – both sides

    – Weird sensations/feel disoriented

    – Notice that my memory is not that great – can’t remember what I’m doing the moment before or what I was about ready to do.

    – Shortness of breath – comes and goes

    – twitches in arms and legs

    – left hip pain

    – low grade fever

    – toenails now have horizontal ridges

    Isabell,

    All of your symptoms except for the last three could absolutely be related to anxiety. That the symptoms come “out of the blue” sometimes makes it all the more difficult to believe they could possibly stem from anxiety.

    I am glad you are only slightly anemic and hope that your upcoming PET/CT scan goes well.

    #61925
    everymoment
    Participant

    Hi,

    Thanks for the reply. I agree that they could all be caused by anxiety. I’m not blind to that possibility. I guess the fact that I’ve had a stroke and all of these things are happening at the same time just leads me to believe that they are some how connected.

    I hope my PET goes well too.

    Isabell

    #61926
    BNP68
    Participant

    Isabell,

    Glad to hear your anemia is not too bad. I still think it’s a little odd if you’ve never had a tendency toward anemia. When I had my symptoms my hemoglobin was in the low 8s so I was definitely feeling the effects.

    I really do like Dr. Tyler. It seems like everyone I meet at Duke or even elsewhere (Moffitt, UVA)has a tremendous amount of respect for him. I would highly recommend him. Having said that, I haven’t been impressed with some of the other oncologist I’ve met with at Duke and in particular their melanoma “specialist”.

    Good luck with the scans tomorrow!

    Brian

    #61927
    everymoment
    Participant

    Thank you all for your support. The PET/CT came back clear:-) I’m relieved. I still don’t feel good and they still can’t figure out why I’ve had a stroke at 35. I am going to try acupunture! Any one done that before?

    Isabell

    #61928
    Catherine Poole
    Keymaster

    That is great news, but not great that you don’t feel well. I think you should still consider another opinion and get to the bottom of this. Perhaps an excellent internal medicine person. You need a wise physician to figure this out. Acupuncture can be helpful but still won’t figure out what happened with the stroke etc.

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