Roseanne, I can't answer your questions, but I feel you've done a good job of laying out your situation. I am confident that the good people of this forum will share their considerable knowledge and concern with you, and so I am replying principally to bump your post back up to the top of the list.
I'd also like to take a moment to welcome you to our group. I believe if you're patient with us, we'll be able to share oodles of good stuff with you. Check out the Health Pages (click on the icon near the upper right corner of the page) for a lot of information that should be especially helpful.
Meanwhile, I will pray that you find the answers you seek.
Hell Roseanne your symtoms sound very MS the wet feeling is the one I hate because i feel like my bladder is leaking and I look and feel but its dry.
The weakness and pins and needles in the shower I have when in flare.
I havent been dianoised yet but docs think MS just waiting for scan no 2 results to see if there are any changes with three leisions.
The process for diagnosis can be drawn out.
Have you had any abnormal Neuro tests?
The scan is just part of the tests.
Welcome to the forum tarter
My gosh, I'm so sorry for the suffering this car accident has caused you. The problems you describe could be directly related to your accident, which I'm sure you are already aware of. A few, especially the parathesia (water sensation) overlap with what many experience with MS due to damage within the central nervous system. Though there are other possible sources.
I'm very glad to hear you are getting your spine imaged. This should help steer the Dr. in a direction to investigate the cause. With your history, I'd be surprised if MS was on their radar simply due to all the other possibilities needed to be exhausted 1st.
Adding on a big welcome to our forum to you because no matter what the cause, we can relate to some of what you are experiencing and hopefully provide some coping mechanisms while you wait for some answers. Support, education and compassion is a given here.
Thanks for joining us Rosanne, see you around!
Thank you for your kind comments and prayers. I am sure the group here are able to guide me through my health issues. Like everyone else, it is hard to cope with when one was so active and then you find you are no longer to work and placed on a Disability Pension. Then there is plenty of people just like me here, in the Forum as I have read many of their personal stories. I have found you need strength to keep going and I have dug deep many times but I have found it. It sometimes is not clearly shown to you, strength can come in different forms.
Thank for your comments, it has been nice to hear from some people as this can be rather frightening. Yes I have hyperreflexia,which has started this ball rolling. It means that when I had a neuro test my legs went flinging in the air and the Doctor said; I nearly kicked him in the face.
He said; a lot more was happening in my body than my spine injuries, but I did not realize what he meant until I looked up UMN to see what he was doing the full MRI for. I have read that it is hard to diagnose which is concerning as if it is that, one is going without treatment if they are not able to confirm it straight away.
How long will it be for you between your first scan until your second one?
Many times feel I am wet between my legs, but nothing is there also.
HI! SORRY FOR CAPS - MY EYES DONT QUITE WORK ALL THE TIME...
ANYWAYS, I'M SO SORRY YOU ARE HAVING THESE PROBS AND HOPE YOUR 'JOURNEY' TO GETTING SOME ANSWERS IS NOT TO LONG...
I WAS FINALLY DX'D IN SEPT 09, I HAVE A LOT OF THE SAME PROBS THAT YOU EXPLAINED. PLEASE BE MORE PUSHY THAN ME THOUGH, ITS TAKEN ALMOST 10 YEARS FOR THE DRS TO FIGURE ME OUT, BECAUSE LIKE YOU I HAD AN AUTO ACCID IN 2002 THAT FRACTURED MY BACK & MESSED ALL SORTS OF THINGS UP...
I COULDN'T GET THE DRS TO UNDERSTAND SOME OF MY SX HAD STARTED WELL BEFORE MY ACCIDENT! I WAS 19 WHEN 1ST SX STARTED AND 22 WHEN MY WRECK HAPPENED. THEY ALL JUST KEPT BLAMING MY INJURIES FOR ALL MY PROBLEMS!
EVEN THE NEURO I SAW AFTER A BRAIN MRI SHOWED 4 LESIONS AT THAT TIME SAID I WAS TO YOUNG & DIDNT HAVE 'ALL' THE SX OF MS!
KNOW HERE I AM 8 YEARS LATER, DX'D WITH MS, FIBROMYALGIA, AND ANOTHER 'UNKNOWN' AUTO-IMMUNE DISEASE ACCORDING TO MY RHEUMY. NOW I HAVE 11 LESIONS ON BRAIN AND TOO MANY TO COUNT ON MY SPINE.
SORRY FOR THE RAMBLING & GOOD LUCK TO YOU! LIVE, LAUGH, LOVE
Thank you for thoughts on MS, my Doctor is new, I went to see him for pain management at the Royal Melbourne Hospital. Thankfully he realizes that some of my symptoms are not my back injury, hence why he wants to do the brain and full spine and not just my injured area.
He told me that I have a lot more going on in my body than just my back injuries. The reason was when he did neurological tests I nearly kicked him in the face. He said; I had hyperreflexia, which is why along with my symptoms he is wanting to have this full MRI.
I know from reading people's stories that it can take years before you start treatment. It is terrible what people with MS have to bare and my heart goes out to many of you.
I have 7 days to go before my scan, they are doing it on a Saturday. Hopefully this will lead to a diagnosis of what is wrong within my body.
I will let you know what my MRI report says.
Thanks for touching base with me, I appreciate your doing so.
THANK YOU TAKING THE TIME TO ANSWER MY POST. YOU ARE RIGHT, I HAVE SEEN SOME DOCTORS THAT HAVE LOOKED AT ME AND SAID YOU NOT NOT POSSIBLY HAVE THAT HAPPENING TO YOU, AS THEY ARE ONLY GOING ON MY LOWER BACK INJURIES AND NOT SEEING THE OTHER PICTURE.
I AM SO GLAD THIS DOCTOR AT A TEACHING HOSPITAL SPENT 1 3/4 HOURS WITH ME, DOING ALL THESE NEURO TESTS TO TREAT ME FOR CHRONIC PAIN. HE KNEW STRAIGHT AWAY THAT SOMETHING ELSE WAS WRONG WITH ME. THE OTHER DOCTORS DID NOT DO PROPER NEURO TESTS.
SO I AM SO GLAD THIS DOCTOR SEEN OUTSIDE THE SQUARE AND KNEW STRAIGHT AWAY THAT IT WAS NOT MY BACK INJURY CAUSING ME THESE PROBLEMS.
I ALSO FORGOT TO MENTION THAT TWICE NOW I MY EYES WENT COMPLETELY BLACK, I COULD SEE NOTHING, IT LASTED FOR ABOUT 30 SECONDS, SO FRIGHTENING. IT WAS ABOUT 2 MONTHS APART FROM EACH ONE, I FORGOT TO ACTUALLY TELL THIS DOCTOR THAT. IS IT IMPORTANT TO TELL HIM?
I FEEL FOR YOU WITH WHAT YOU HAVE HAD TO ENDURED, WHY SOME OF THESE DOCTORS DON'T LISTEN IS BEYOND MY UNDERSTANDING.
THANK YOU AGAIN, AND I HOPE YOUR SITUATION MAY GET BETTER FOR YOU.
I want to welcome you, too, to the forum.
Many of your symptoms could be due to your injuries, but there's a couple of symptoms that don't seem to line up with the injuries you received to your spine from the accident--like the vision problem and speech problem that you mentioned in your profile. However, I'm not a doctor and I could be wrong, but it seems like that these two symptoms may be due to something going on in the the brain.
Yes, it is very, very important to let your doctor know about the vision problem. There's another test, EVP that can help identify if you've had damage to the optic nerve (another place of attack when it come to MS). When it comes to optic neuritis, this tends to happen in one eye at a time. However, this is still not an impossibility in regards to MS to have optic neuritis in both eyes. Did you lose blood during your accident or have a blow to the head?
Did you experience any symptoms prior to your accident? Sometimes, major trauma (physical and emotional) can trigger an attack in MS (or other autoimmune diseases). So, your doctor is smart to rule out MS. Also, other autoimmune diseases, like lupus, Sjogren's, can be triggered by tramatic events like the one you had. Lupus can cause optic neuritis and lesions in the brain as well.
Thank you for touching base with me. I can't place any symptoms prior to the accident. I was lucky to have seen a Doctor about once-twice a year, I never had any health problems.
I did not have a head injury but I did have severe whiplash pain for about 3 weeks, had physiotherapy and it went away. My car was airborne and crashed back down in the accident. So my head would have been swinging around.
In the past year these things have occurred, others were sometime in the 1 -3 years all at different points of time.
So for the past 12 months or so, my voice wavering and shaky, difficulty in swallowing, I had thyroid tests which was clear. The weakness in my legs started about 18 months ago. Muscle jerking for about 2 months and the facial pins and needles has been happening every day for the past 3 weeks, where before it was just now and then. When I get out of a chair my feet are funny and its like they don't know what to do, so I stumble around for 30- 40 seconds getting balance. My sister has said when she has walked behind me that my legs cross over like scissors do.
It is interesting you mention Lupus as I never thought of that, I shall look into that. My body has gone through so much severe pain and trauma in the past 4 years, I have taken tramadol,endone,fentanyl, lyrica,tegretol,epilim, and I am trying Gabapentin 900mg a day and Norspan Pain Patches 10mg, my GP wants me to go to 15mg patch as he knows I am still in unbearable pain. I am going to see him tomorrow too write up the script for it, as I can't bear the pain anymore.
I too have wondered if all the trauma too my body may have caused these other problems. I feel the Pain Specialist is right in saying that something else is going on in my body. At least he acknowledges this, I pray they find something on my MRI that will give me some answers to help with treatment for my pain.
It would be just good to have some answers about what is wrong so I do get the right diagnosis, so I can get treatment.
Greetings, Roseanne. Let me add a very belated welcome to the forum here. As you have already seen from the response, we have a very compassionate and educated community.
Yes, you definitely need to tell the doctor about the vision episodes. That is often another piece of the dx puzzle, though some of us have never had optic neuritis.
You might be surprised how many of us have our MS *accidentally* discovered while be tested for other problems.
It sounds to me like you have multiple things going on in your body, and that is muddying the diagnostic waters. The symptoms you describe most certainly are neurological in nature, but the answer as to why this is happening may not be so clear.
I really hope that your scans next week will reveal some clear answers to your doctors and you find a good course of treatment to help with the pain and your other symptoms.
In the meantime, we're here if you have more questions.
wishing you well,
HOPE YOUR HAVING A GOOD DAY!!! ITS TRYING TO WARM UP SOME SO I'M HOPING TO HAVE A 'GOOD' DAY LOL! JUST WANTED TO TELL YOU GOOD LUCK AGAIN! MY GP I SAW FRI IS REFERRING ME TO VANDERBILT, A LEARNING HOSPITAL TOO, SO MAYBE 1 DAY I'LL FIND A DR WHO MAYBE KNOWS 'SOMETHING' ABOUT THIS!
I WISH MORE DR'S TOOK MERIT TO THE 'ACCIDENTAL' FINDING OF MS! IF THEY DID, ATLEAST AROUND HERE, I WOULD HAVE KNOWN 8 YEARS AGO WHEN THE 'POSSIBILITY' SHOWED UP IN TESTS FOR ALL THE SYMPTOMS I WAS HAVING/EXPLAINING THAT THEY JUST COULDN'T FIGURE OUT! HMMMM... ANYWAYS, HOPE ALL HAVE A GREAT DAY :)
LIVE, LAUGH, LOVE
From a purely basic science point of view, any injury to your central nervous system that might result in inflammation could potentially lead to autoimmunity against spine/brain tissue. The blood brain barrier usually prevents the immune system from from having access to these tissues because they are not recognized as "self" by the immune system. But any inflammation can cause the barrier to become leaky. When that happens, proteins from the CNS are processed by the immune system, and T and B lymphocytes become programmed to recognize them and try to destroy them. So your spinal injuries may be the initial cause but ultimately a red herring as far as a diagnosis of MS goes
Hi Lulu, You are so right, the members have outreached themselves to offer me help and advice. I needed and need this so much. As many of you would know it can be a very long lonely road when you are constantly un-well. Friends disappear as you can no longer be reliable in going out.
Today has been a horrible day as for the past week I have been in a very high pain wave. I went to my General Practitioner today for extra pain relief as I good not cope with it anymore. I am using 10mg Pain Patch Norspan and he added another 5mg patch. Using endone until this patch starts working which is 3 days. I just hope the scan will help me as it is hard to deal with chronic pain.
Thanks for your contact and support, it is very much appreciated.
Today I left home at 4.30am and traveled to Melbourne for 5 hours to get to the Hospital for my MRI. I did not get home until 11.30 pm so it was a long trip by train and coach for me.
I spent 2 hours have the full spine and brain done all at once. The radiologist asked me after when I was seeing my Doctor, which is March 18th. He said; I would be called back in as sometimes they want to do more tests and asked me when I could come back down next.
Obviously something appeared on the MRI and that needed extra testing. It this normal to happen when they are looking for upper motor neuron problems, to have further tests down?
Would appreciate your advice and help on this please.
They do sometimes call you back in when something is not clear, though that is usually after the radiologist report is prepared. Was this a technician that mentioned this?
It was the Radiologist who spoke to me, he introduced himself.
I had the MRI done at a private Radiology Imagining Center, they do the overflow for the Public Hospital where the Pain Specialist is at.
The Radiologist told me they send the films upstairs to the Public Radiologist to write up the report on the film. Crazy system but I suppose Hospital do it that way to save money.