reigan
08-25-2007, 01:18 AM
Hi All,
I am new to this and I know this post is a long but I'm hoping someone can help me... I started having MS like symptoms about 2 years ago- very mild- I kept thinking it was something I ate making me dizzy or once I thought there was a carbon-monoxide leak- or I was having an allergic reaction to my diet pills etc. but last summer I had a bad flare with almost every symptom in the book, I could barely get around or move my legs, I was afraid to leave the house, I couldn't turn my head with out tipping over because of the vertigo. I had numbness and tingling everywhere, even in my crotch and my face and head. I had patches of skin that felt like I had hot oil burns- I got lost a lot when I went out, I forgot where I was every few minutes, couldn't read -words looked like jumbled letters- I cried all of a sudden really hard- then sort of stopped and felt okay. Sometimes when I looked around it was like things were visually stretched out, or like there were frames missing (like in the horror shows) I couldn't figure stuff out, like how to close a box, and other stuff, I guess you all know I could go on for 3 paragraphs- it lasted for several months. I couldn't remember anything so I started writing down the symptoms as they happened and had 5 note book pages. Also, my right eye was weird- I thought I was going color blind. When I finally went to the eye dr. he had me look at a color card one eye at a time and I was seeing two different colors (but still in the same field) depending on which eye. Sounds unreal- right? Well, the eye dr. told me to see a neuro. but I didn't have insurance so a friend of mine (who is also a dr.) heard my story and said it sounds like MS and that she knew someone who treats MS patients nutritionally, that way I could get treatment while applying for ins. So I did a consult w/ the nutritionist (who is also a pharmacist) and she overhauled my diet and gave me a bunch of pills and in the mean time I got insurance (a year later) and now I'm feeling much better but not 100%. So I just went to see the neuro and he did three things- a brain MRI and an EEG which were both normal and he sent me to a psychiatrist for depression which the psych. said I don't have clinical depression but the neuro thinks I have dysthymia (isn't that a symptom of MS?) but dysthymia doesn't account for all the other symptoms... I have had lyme test which was negative (two different tests) and all blood work for other stuff, anemia, b-12 etc. is fine. I am at a total loss if this could be MS. My neuro poo-pooed me when I asked about the spinal MRI and also told him I don't sleep well and he didn't seem interested in that either. I do have a constant tingling in the center of my spine that is sometimes painful- but I don't see how that is related. I also have a constant pain on my right shoulder blade that started right around the same time as everything else - also doesn't seem related. I have no idea what it could be. I don't want it to be MS but I feel like I'm never going to know. The nutritionist says she has patients come to her with MS in wheelchairs who after about a year of intense treatment go into total remission and show clear MRI's and that I am clear because we caught it early and did the treatment but I never had the original dx and my husband is insisting on a real dx. ug!
I am new to this and I know this post is a long but I'm hoping someone can help me... I started having MS like symptoms about 2 years ago- very mild- I kept thinking it was something I ate making me dizzy or once I thought there was a carbon-monoxide leak- or I was having an allergic reaction to my diet pills etc. but last summer I had a bad flare with almost every symptom in the book, I could barely get around or move my legs, I was afraid to leave the house, I couldn't turn my head with out tipping over because of the vertigo. I had numbness and tingling everywhere, even in my crotch and my face and head. I had patches of skin that felt like I had hot oil burns- I got lost a lot when I went out, I forgot where I was every few minutes, couldn't read -words looked like jumbled letters- I cried all of a sudden really hard- then sort of stopped and felt okay. Sometimes when I looked around it was like things were visually stretched out, or like there were frames missing (like in the horror shows) I couldn't figure stuff out, like how to close a box, and other stuff, I guess you all know I could go on for 3 paragraphs- it lasted for several months. I couldn't remember anything so I started writing down the symptoms as they happened and had 5 note book pages. Also, my right eye was weird- I thought I was going color blind. When I finally went to the eye dr. he had me look at a color card one eye at a time and I was seeing two different colors (but still in the same field) depending on which eye. Sounds unreal- right? Well, the eye dr. told me to see a neuro. but I didn't have insurance so a friend of mine (who is also a dr.) heard my story and said it sounds like MS and that she knew someone who treats MS patients nutritionally, that way I could get treatment while applying for ins. So I did a consult w/ the nutritionist (who is also a pharmacist) and she overhauled my diet and gave me a bunch of pills and in the mean time I got insurance (a year later) and now I'm feeling much better but not 100%. So I just went to see the neuro and he did three things- a brain MRI and an EEG which were both normal and he sent me to a psychiatrist for depression which the psych. said I don't have clinical depression but the neuro thinks I have dysthymia (isn't that a symptom of MS?) but dysthymia doesn't account for all the other symptoms... I have had lyme test which was negative (two different tests) and all blood work for other stuff, anemia, b-12 etc. is fine. I am at a total loss if this could be MS. My neuro poo-pooed me when I asked about the spinal MRI and also told him I don't sleep well and he didn't seem interested in that either. I do have a constant tingling in the center of my spine that is sometimes painful- but I don't see how that is related. I also have a constant pain on my right shoulder blade that started right around the same time as everything else - also doesn't seem related. I have no idea what it could be. I don't want it to be MS but I feel like I'm never going to know. The nutritionist says she has patients come to her with MS in wheelchairs who after about a year of intense treatment go into total remission and show clear MRI's and that I am clear because we caught it early and did the treatment but I never had the original dx and my husband is insisting on a real dx. ug!
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zandvoort
08-25-2007, 09:34 AM
Hi Regan- NEVER an imposition when someine is searching for relief! Welcome to the board. This place has saved my sanity many times over. There are wonderful people here (did I just compliment myself??) LOL.
I am sorry to hear of your troubles. My docs thought I had MS for about 9 months but there were some things that did not add up and my MRIs were clean. finally, thankfully, Someone pointed me to Lyme. I was diagnosed last month. I know you said you had negative Lyme tests but what the normal docs do not seem to understand is that there are NO accurate Lyme tests - Spinal Tap only catches 5%, it is very common to have a negative western blot if you have been infected for a long period of time. Lyme can change forms and can get ris of it's cell walls to hide in your normal cells so your immune system does not know it is there and does not build the anti-bodies- which is what the tests look for.
The only doc I would trust to rule in or out Lyme is a LLMD (Lyme literate MD). I went to 3 neuros (including high ranking Mass General) and a Rhuematologist and they all took one look at the negative Western blot and said- not lyme-. The earlier you can identify and treat it, the better your prognosis.
I am in Mass and have heard of 2 LLMds but they both are a bit questionable on the Lyme circuit. I go to one of them (he diagnosed me) and I am going to check him out with the south boston lyme support group. I would sugest if you think you may have Lyme after looking at the list below ( I stole the list from a lyme knowledgable poster named Ticker), you should call that support group ( in addition to going to the Lyme board here).
I agree with your husband- you should get a real dx. Some of the treatments for these diseases are exactly opposite each other- like Lyme needs to boost immune systems and MS needs to depress them. steroids are a Killer for lyme people.
Best wishes- you will continue in my thoughts- please let us know how you are doing!:)
Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol
I am sorry to hear of your troubles. My docs thought I had MS for about 9 months but there were some things that did not add up and my MRIs were clean. finally, thankfully, Someone pointed me to Lyme. I was diagnosed last month. I know you said you had negative Lyme tests but what the normal docs do not seem to understand is that there are NO accurate Lyme tests - Spinal Tap only catches 5%, it is very common to have a negative western blot if you have been infected for a long period of time. Lyme can change forms and can get ris of it's cell walls to hide in your normal cells so your immune system does not know it is there and does not build the anti-bodies- which is what the tests look for.
The only doc I would trust to rule in or out Lyme is a LLMD (Lyme literate MD). I went to 3 neuros (including high ranking Mass General) and a Rhuematologist and they all took one look at the negative Western blot and said- not lyme-. The earlier you can identify and treat it, the better your prognosis.
I am in Mass and have heard of 2 LLMds but they both are a bit questionable on the Lyme circuit. I go to one of them (he diagnosed me) and I am going to check him out with the south boston lyme support group. I would sugest if you think you may have Lyme after looking at the list below ( I stole the list from a lyme knowledgable poster named Ticker), you should call that support group ( in addition to going to the Lyme board here).
I agree with your husband- you should get a real dx. Some of the treatments for these diseases are exactly opposite each other- like Lyme needs to boost immune systems and MS needs to depress them. steroids are a Killer for lyme people.
Best wishes- you will continue in my thoughts- please let us know how you are doing!:)
Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol