Blessed4Life
11-07-2006, 05:46 PM
I have been away for a few months. After my last visit to the neuro, I just couldn't take being made to feel like a crazy person any more. I decided to just ignore my aches, pains, and weird feelings and pray that they would go away. On August 22nd I put down my journal and didn't pick it back up until yesterday. For most of the past few months, I have had things pretty easy. An occasional finger twitch, shock in my hand, trembling lip, or a pesky "headache" but nothing unbareagble. Then about two weeks ago, things changed. It started with left hand. It felt like electricty was being run through it. Then my legs joined in with trembling muscles. That was followed by more aggressive twiching in my face (upper lip and nose). That was followed by tightening in my upper right thigh muscle. I was sitting at work and suddenly my thigh felt like I had been working out the gym for a few days. Now today, I have shock waves in my right arm running into my hand. And as I type this, the tip of my ringfinger has feels like someone is sticking me with a stick pin.
I am so tired of these feelings that no one can see and no one takes seriously. I know that I need to start journaling again, but I just dread feeling like a crazy person when I see the neuro in a couple of months.
Michelle
I am so tired of these feelings that no one can see and no one takes seriously. I know that I need to start journaling again, but I just dread feeling like a crazy person when I see the neuro in a couple of months.
Michelle
Sponsor
shellymay
11-07-2006, 06:09 PM
Blessed4Life,
I know exactly what you mean. Why do doctors not want to listen and just assume we are crazy. I was told that maybe I needed to write down all my symptoms for when I go to the neurologist, so in case I forget something, I have it all written down. The neuro told me that from seeing a list of symptoms as I had written down it makes him think of depression. What the &*## is that about? You can't win for losing with these guys. I'm sorry that you are having problems also. I am also the same as you with just forgetting it and dealing with my symptoms. I haven't been to a doctor since July and have just been dealing with the symptoms. But enough is enough and I am going to go to yet another neurologist and see what he says. I am not crazy there is something wrong and someone is going to listen to me.
Michelle
I know exactly what you mean. Why do doctors not want to listen and just assume we are crazy. I was told that maybe I needed to write down all my symptoms for when I go to the neurologist, so in case I forget something, I have it all written down. The neuro told me that from seeing a list of symptoms as I had written down it makes him think of depression. What the &*## is that about? You can't win for losing with these guys. I'm sorry that you are having problems also. I am also the same as you with just forgetting it and dealing with my symptoms. I haven't been to a doctor since July and have just been dealing with the symptoms. But enough is enough and I am going to go to yet another neurologist and see what he says. I am not crazy there is something wrong and someone is going to listen to me.
Michelle
Blessed4Life
11-07-2006, 09:35 PM
Michelle,
If only we could get them to stop thinking "psycho". I actually began to think that about myself as I would journal my symptoms. I wondered if they were become my frequent and more aggressive because I was writing them down. I wondered if there were things I was writing down that shouldn't have been written. But then, what if I left something out that should have been put in. This is so frustrating.
Michelle
If only we could get them to stop thinking "psycho". I actually began to think that about myself as I would journal my symptoms. I wondered if they were become my frequent and more aggressive because I was writing them down. I wondered if there were things I was writing down that shouldn't have been written. But then, what if I left something out that should have been put in. This is so frustrating.
Michelle
shellymay
11-07-2006, 10:51 PM
Michelle,
I totally agree!!! Let me tell you!! I went to the ER one night my symptoms got so bad and I was starting to have panic attacks because I didn't know what was happening to me and they doped me up with serequil and put me in the psych ward. That medication threw me for a loop. The next day I still wasn't right and couldn't get out of bed. They called for lunchtime and I called the nurse and asked her if she could bring it to me because I still couldn't stand up straight from the medication and she told me that they didn't do that here that you had to come get your own food. My husband wasn't allowed to visit me but only from 1:00pm to 3:00pm and when he got there at 1:00pm, I told him to tell them that I was checking myself out. I left. You here this alot with people who are having MS symptoms and the doctors treating you as psych patients. Why can't they just listen to us!!! We know our bodies better than they do.
Michelle
I totally agree!!! Let me tell you!! I went to the ER one night my symptoms got so bad and I was starting to have panic attacks because I didn't know what was happening to me and they doped me up with serequil and put me in the psych ward. That medication threw me for a loop. The next day I still wasn't right and couldn't get out of bed. They called for lunchtime and I called the nurse and asked her if she could bring it to me because I still couldn't stand up straight from the medication and she told me that they didn't do that here that you had to come get your own food. My husband wasn't allowed to visit me but only from 1:00pm to 3:00pm and when he got there at 1:00pm, I told him to tell them that I was checking myself out. I left. You here this alot with people who are having MS symptoms and the doctors treating you as psych patients. Why can't they just listen to us!!! We know our bodies better than they do.
Michelle
MSNik
11-07-2006, 11:22 PM
HI Michelle and Michelle. I just want to say I feel so bad for both of you! And, I do not understand why you are being made to feel like you are....the symptoms you describe are so very common with MS...you both need to find new Neuro's possibly MS SPecialists and start over! I have very many of the exact same symptoms, which come and go...however I am now on Rebif, was diagnosed in less than 3 months time, and am getting the best care possible. Everyone deserves good care..find it!
Nikki
Nikki
duttin
11-07-2006, 11:31 PM
Blessed,
Sorry to hear that the previous symptoms are flairing up.The muscle tightening is enough on its own.Continue to keep your journal.
Don't let the words of your neuro make you think your a crazy person.Neuro's are not the most understanding DR's.You'd think since they work with the brain and central nervous system that they would have some consideration for there patients especially when test come up negative.Not everything is black and white and many neuro's don't like to explore the unknown.
Your symptoms are definatly neurological,not psychological.Yes the stress from the symptoms and idiot DRs can make symptoms worsen.
Blessed I had an updated MRI with and without contrast,which came back occipital atrophy and the same lesion in the occipital region.(no changes from the last one)One week later I had a ENG/VNG a balance test,the results came back CNS abnormalities of the brainstem or left cerebral hemisphere,consistant with MS.If my neuro wouldn't of sent me to the ENT these findings would not of been found.MRI's are great for larger lesions,but micro lesions are not detected.They are detected through evoked testing.
My neuro (I'm blessed to have)was concerned about my hearing loss and tinnitus.An ENT are the only med practice in my area that does the ENG/VNG.Even though both symptoms are compatible with MS,they are not all that common if that makes sense.He wanted to rule out the possibilities of an inner ear disorder.
With these test it explains the off balance and nystagmus.
Please don't think of yourself as being crazy,you are a patient with neurologic symptoms from an unknown origin.Being in limbo is hard,I was there and its frustrating.Not knowing is scary.You have much help and support here.
Toni
Sorry to hear that the previous symptoms are flairing up.The muscle tightening is enough on its own.Continue to keep your journal.
Don't let the words of your neuro make you think your a crazy person.Neuro's are not the most understanding DR's.You'd think since they work with the brain and central nervous system that they would have some consideration for there patients especially when test come up negative.Not everything is black and white and many neuro's don't like to explore the unknown.
Your symptoms are definatly neurological,not psychological.Yes the stress from the symptoms and idiot DRs can make symptoms worsen.
Blessed I had an updated MRI with and without contrast,which came back occipital atrophy and the same lesion in the occipital region.(no changes from the last one)One week later I had a ENG/VNG a balance test,the results came back CNS abnormalities of the brainstem or left cerebral hemisphere,consistant with MS.If my neuro wouldn't of sent me to the ENT these findings would not of been found.MRI's are great for larger lesions,but micro lesions are not detected.They are detected through evoked testing.
My neuro (I'm blessed to have)was concerned about my hearing loss and tinnitus.An ENT are the only med practice in my area that does the ENG/VNG.Even though both symptoms are compatible with MS,they are not all that common if that makes sense.He wanted to rule out the possibilities of an inner ear disorder.
With these test it explains the off balance and nystagmus.
Please don't think of yourself as being crazy,you are a patient with neurologic symptoms from an unknown origin.Being in limbo is hard,I was there and its frustrating.Not knowing is scary.You have much help and support here.
Toni
Blessed4Life
11-08-2006, 09:31 AM
I think the most frustrating part is that I have thyroid disease. Because the thyroid affects your entire body, no matter what symptom comes up the drs (all except my endo dr -- takes care of my thryoid) says oh it must be your thryoid. My Endo says your thyroid levels are perfect so it's not the thyroid. I tell the neuro and they say well somes even when the thyroid levels are "normal" you can still be off balance in some areas. It makes no sense to me and I don't have MD after my name. I admit that when my thyroid was overactive, I was like somone plugged into an electrical outlet! I couldn't focus, my body hurt all over, I went from being like the energizer bunny one minute to a zombie the next. But after going through radiation and having the best Endo Dr (who wasn't bad on the eyes :D ) tell me that my thyroid reacted perfectly to the radiation and was officially "dead" and that I would take Synthroid everyday for life, I do not think it is the old "out of wack thyroid". I get my levels tested regularly. They are always "perfect" and yet my muscles and nerves don't seem to have gotten the memo! :rolleyes:
I go to a clinic so I mostly see residents unless they are completely at a loss and have to call in the big guns---usually happens every time I go to the neuro. I have been poked with needles and asked to push and pull. The last time I could feel myself that my left side was weaker than my right but they blew that off. I had a 15 minute brain MRI about 10 months ago. The last time I went they refused to do it again. It is like if you advocate for yourself because of symptoms, you must have a mental health problem. But if you do not, you suffer in silence until one day you are unable to walk! I just want to run into the clinic and start screaming but I guess that would only get me a straight jacket!:dizzy: LOL (Better to laugh than cry)
Michelle
I go to a clinic so I mostly see residents unless they are completely at a loss and have to call in the big guns---usually happens every time I go to the neuro. I have been poked with needles and asked to push and pull. The last time I could feel myself that my left side was weaker than my right but they blew that off. I had a 15 minute brain MRI about 10 months ago. The last time I went they refused to do it again. It is like if you advocate for yourself because of symptoms, you must have a mental health problem. But if you do not, you suffer in silence until one day you are unable to walk! I just want to run into the clinic and start screaming but I guess that would only get me a straight jacket!:dizzy: LOL (Better to laugh than cry)
Michelle
shellymay
11-08-2006, 09:50 PM
MSNik,
I agree and thank you for your concern. I am in the process of finding anew neurologist and hopefully one that will listen to me. I am so glad that you are on treatment that is working and have a good neurologist. Hopefully we can find the same.
Michelle
I agree and thank you for your concern. I am in the process of finding anew neurologist and hopefully one that will listen to me. I am so glad that you are on treatment that is working and have a good neurologist. Hopefully we can find the same.
Michelle
shellymay
11-08-2006, 09:55 PM
Michelle,
I like that!!!! I just want to run into the clinic and start screaming but I guess that would only get me a straight jacket!!! How true that is!!!!
Michelle
I like that!!!! I just want to run into the clinic and start screaming but I guess that would only get me a straight jacket!!! How true that is!!!!
Michelle