Possible MS...need to vent
EMANDMSMOM posted:
Hi all,
I have had "symptoms" for over 10 years and no definite diagnosis. I have tremors...which have slowly progressed, For the past 5 years I have developed extreme heat sensitivity. when i was initially tested 11 years ago, I was experiencing tremors, numbness in my left arm, and left side of my face. I had several MRI's(C spine and brain) C-spine was OK, brain showed 6 lesions. I was tested for Lyme's, vitamin deficiencies, and had evoked potential testing done. I was told at the time that I did not meet the criteria for an MS diagnosis, but it was possible that this was the problem with me. Now, I have increased tremors, heat sensitivity (this has gotten worse), spascisity in my right arm, and the facial numbness is back. I am also experiencing some muscle pains the past few days. I am scheduled for an MRI in the beginning of March, but am scared to death that by waiting, I may being getting worse without any treatment. I have to wait until next month due to insurance deductible being met...its EXPENSIVE to be sick! Researching over the past few days, I am torn at seeing information that sounds so much like me pointing to MS, part of me happy(?) to possibly have a diagnosis, and part of me terrified of what having MS would mean. Anyway, I wanted to post, because maybe people who are reading this know the boat I am in...as its really tough to explain to people who aren't in the "been there done that" category.
I have had "symptoms" for over 10 years and no definite diagnosis. I have tremors...which have slowly progressed, For the past 5 years I have developed extreme heat sensitivity. when i was initially tested 11 years ago, I was experiencing tremors, numbness in my left arm, and left side of my face. I had several MRI's(C spine and brain) C-spine was OK, brain showed 6 lesions. I was tested for Lyme's, vitamin deficiencies, and had evoked potential testing done. I was told at the time that I did not meet the criteria for an MS diagnosis, but it was possible that this was the problem with me. Now, I have increased tremors, heat sensitivity (this has gotten worse), spascisity in my right arm, and the facial numbness is back. I am also experiencing some muscle pains the past few days. I am scheduled for an MRI in the beginning of March, but am scared to death that by waiting, I may being getting worse without any treatment. I have to wait until next month due to insurance deductible being met...its EXPENSIVE to be sick! Researching over the past few days, I am torn at seeing information that sounds so much like me pointing to MS, part of me happy(?) to possibly have a diagnosis, and part of me terrified of what having MS would mean. Anyway, I wanted to post, because maybe people who are reading this know the boat I am in...as its really tough to explain to people who aren't in the "been there done that" category.
1 Replies |Watch This Discussion | Report This| Share this:Possible MS...need to ventHi all,<br /><br />I have had "symptoms" for over 10 years and no definite diagnosis. I have tremors...which have slowly progressed, For the past 5 years I have developed extreme heat sensitivity. when i was initially tested 11 years ago, I was experiencing tremors, numbness in my left arm, and left side of my face. I had several MRI's(C spine and brain) C-spine was OK, brain showed 6 lesions. I was tested for Lyme's, vitamin deficiencies, and had evoked potential testing done. I was told at the time that I did not meet the criteria for an MS diagnosis, but it was possible that this was the problem with me. Now, I have increased tremors, heat sensitivity (this has gotten worse), spascisity in my right arm, and the facial numbness is back. I am also experiencing some muscle pains the past few days. I am scheduled for an MRI in the beginning of March, but am scared to death that by waiting, I may being getting worse without any treatment. I have to wait until next month due to insurance deductible being met...its EXPENSIVE to be sick! Researching over the past few days, I am torn at seeing information that sounds so much like me pointing to MS, part of me happy(?) to possibly have a diagnosis, and part of me terrified of what having MS would mean. Anyway, I wanted to post, because maybe people who are reading this know the boat I am in...as its really tough to explain to people who aren't in the "been there done that" category.
ClaimingMyHealing responded:
Well I just been told that I have CIS or Clinical Isolated Syndrome. This is the diagnosis before MS, although I believe I have actual MS. I understand that are are certain criteria they look for before saying for sure its MS. In retrospect I believe I have been dealing with this for approximately 6 years without a clue as the majority of my symptoms had to deal with my emotions, memory, and thought processes. On recently within the last few months have spasms become more frequent and annoying more than painful.
I would have gone on none with wiser until I was hit in the head a few months back ago and went for a CT. The CT came back abnormal and suggested I get a head MRI. The MRI showed I had over 20 lesions in my brain! Which lead up to my first visit to a neurologist who order the C and T spines. The also showed a few lesions on my spine. Then lumbar puncture or spinal tap was done. This too came back and pointed towards MS. I know it is expensive. (Every time the doctor talks to me its like talking to Charlie Brown's teacher saying, "Ch-ching, ch-ching..."
But I would recommend definitely getting a head MRI and spinal tap. The MRI's and and the tap will tell the story, because MS has some many symptoms that could look like other things. If you really feel like it is MS I think that would be the way to go. In the meantime, look into changing your diet primarily removing gluten first. Then diary and refined sugar. This could help bring you a little relief until you get some meds.
I know its scary right now. I have been getting all these test done since the end of last year. Insurance approval blah, blah and red tape. The suspense was unbearable...the unknown. All I knew and made up my mind was that no matter what I claimed my healing. God is healer and I know it. His healing powers plus the natural fruits, veggies, and vitamins they hold is where our healing lies. Claim your healing!
I would have gone on none with wiser until I was hit in the head a few months back ago and went for a CT. The CT came back abnormal and suggested I get a head MRI. The MRI showed I had over 20 lesions in my brain! Which lead up to my first visit to a neurologist who order the C and T spines. The also showed a few lesions on my spine. Then lumbar puncture or spinal tap was done. This too came back and pointed towards MS. I know it is expensive. (Every time the doctor talks to me its like talking to Charlie Brown's teacher saying, "Ch-ching, ch-ching..."
But I would recommend definitely getting a head MRI and spinal tap. The MRI's and and the tap will tell the story, because MS has some many symptoms that could look like other things. If you really feel like it is MS I think that would be the way to go. In the meantime, look into changing your diet primarily removing gluten first. Then diary and refined sugar. This could help bring you a little relief until you get some meds.
I know its scary right now. I have been getting all these test done since the end of last year. Insurance approval blah, blah and red tape. The suspense was unbearable...the unknown. All I knew and made up my mind was that no matter what I claimed my healing. God is healer and I know it. His healing powers plus the natural fruits, veggies, and vitamins they hold is where our healing lies. Claim your healing!
Report This| Share this:Possible MS...need to ventWell I just been told that I have CIS or Clinical Isolated Syndrome. This is the diagnosis before MS, although I believe I have actual MS. I understand that are are certain criteria they look for before saying for sure its MS. In retrospect I believe I have been dealing with this for approximately 6 years without a clue as the majority of my symptoms had to deal with my emotions, memory, and thought processes. On recently within the last few months have spasms become more frequent and annoying more than painful. <br />I would have gone on none with wiser until I was hit in the head a few months back ago and went for a CT. The CT came back abnormal and suggested I get a head MRI. The MRI showed I had over 20 lesions in my brain! Which lead up to my first visit to a neurologist who order the C and T spines. The also showed a few lesions on my spine. Then lumbar puncture or spinal tap was done. This too came back and pointed towards MS. I know it is expensive. (Every time the doctor talks to me its like talking to Charlie Brown's teacher saying, "Ch-ching, ch-ching..."<br />But I would recommend definitely getting a head MRI and spinal tap. The MRI's and and the tap will tell the story, because MS has some many symptoms that could look like other things. If you really feel like it is MS I think that would be the way to go. In the meantime, look into changing your diet primarily removing gluten first. Then diary and refined sugar. This could help bring you a little relief until you get some meds. <br />I know its scary right now. I have been getting all these test done since the end of last year. Insurance approval blah, blah and red tape. The suspense was unbearable...the unknown. All I knew and made up my mind was that no matter what I claimed my healing. God is healer and I know it. His healing powers plus the natural fruits, veggies, and vitamins they hold is where our healing lies. Claim your healing!
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