AnnieHoo
08-07-2006, 05:28 PM
I am new to this forum, but I'm hoping someone will be able to help me. I have had symptoms (sometimes debilitating) since March (almost nonstop). It started with headaches and severe fatigue, then severe veritgo, imbalance when walking, electrical shocks in my head, depression, anger, and tremors.
I had an MRI which I was told was suspicious, but a spinal tap than was negative. At this point I have a primary care physician that states it's MS but won't diagnose saying that the neurologist is the one that has to do that. The neurologist I saw does not seem to be that proficient in MS. When I explained about the pain I am having, he said that I have Fibromyalgia and he was putting MS on the back burner. I hade another test that the Doctor said one of the results points to MS, but another that usual shows up in MS was normal. I had an appointment at an MS specialty clinic that was cancelled and I am being told I won't be able to be seen until after the first of the year. I have been out of work since March and their has been no improvement in my symptoms, some have worsened. I can't return but I don't have a diagnosis yet to file for ssdi.
Long story but my question involves my last visit to the neuroligist. He was suppose to talk with my primary doc about the best course of meds (I am on fentynal patch for pain, cymbalta, clonopin, valium and requip) He called and said to come in because he had talked to the doc. I drove the 66 miles to see him just to be told that the medicine that I am on now is fine. He suggested that I see a psychiatrist to help manage with the stress. I have to admit that I lost it and said that the stress is coming from not being adequately treated. He said that I would not have severe tremors with MS, that it is stress. I can't tell you what I told him then, but it probably would have made a sailor blush. Does anyone have severe tremors (almost full body shakes)? My other fear is thaqt I have read that damage from MS is permanent and the sooner you start getting treatment the better for you. One last statement, I asked my doctor, "At this point, what would be worse treating me for MS if I don't have it, or not treating me if I do?" His response was definitely not getting treatment, but still deferred to the neurologist.
Annie
I had an MRI which I was told was suspicious, but a spinal tap than was negative. At this point I have a primary care physician that states it's MS but won't diagnose saying that the neurologist is the one that has to do that. The neurologist I saw does not seem to be that proficient in MS. When I explained about the pain I am having, he said that I have Fibromyalgia and he was putting MS on the back burner. I hade another test that the Doctor said one of the results points to MS, but another that usual shows up in MS was normal. I had an appointment at an MS specialty clinic that was cancelled and I am being told I won't be able to be seen until after the first of the year. I have been out of work since March and their has been no improvement in my symptoms, some have worsened. I can't return but I don't have a diagnosis yet to file for ssdi.
Long story but my question involves my last visit to the neuroligist. He was suppose to talk with my primary doc about the best course of meds (I am on fentynal patch for pain, cymbalta, clonopin, valium and requip) He called and said to come in because he had talked to the doc. I drove the 66 miles to see him just to be told that the medicine that I am on now is fine. He suggested that I see a psychiatrist to help manage with the stress. I have to admit that I lost it and said that the stress is coming from not being adequately treated. He said that I would not have severe tremors with MS, that it is stress. I can't tell you what I told him then, but it probably would have made a sailor blush. Does anyone have severe tremors (almost full body shakes)? My other fear is thaqt I have read that damage from MS is permanent and the sooner you start getting treatment the better for you. One last statement, I asked my doctor, "At this point, what would be worse treating me for MS if I don't have it, or not treating me if I do?" His response was definitely not getting treatment, but still deferred to the neurologist.
Annie
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steerpike
08-07-2006, 07:45 PM
I'm also having a rotten, crap time with the doctors. They are dragging their feet in diagnosing me (hurray for the Canadian medical system).... and meanwhile I continue to deteriorate. I recently had to start using a cane, whereas 3 weeks ago I was able to use my legs effectively, and only suffered from upper body symptoms. Like you, If I hear another 'anxiety' related diagnosis, I'm going to snap.
3 useful things to say to doctors if anxiety is brought up.
1) When Polio first appeared doctors considered it a psychosomatic condition.
2) Ask them *sarcastically* if they have penis envy. Freud's nanny apparently had MS and he diagnosed her as suffering from a type of 'female hysteria' (meanwhile she continued to become increasingly more paralyzed)
3) You can also bring in legitimate internet medical studies in i.e. PubMed stuff to substantiate any claims you may have. Make them read it! Many doctors are astoundingly ignorant. Especially GP's. They have no grasp of current clinical research.... they are at least 5-10 years behind the rest of the world. Your health should not be left in their, elitist hands alone!
You can always try homeopathic remedies too, if nothing else. Most are probably not as effective as allopathic drugs, but likely better than nothing. In my case I don't know if I should be supporting my immune system (for possible Lyme/cfs) or diminishing it (MS/etc). ??????????
Anyway, I've been taking green tea, Omega 3 fish oils, Sub-lingual vitamin B12, and curcumin lately. There are many studies that substantiate the effectiveness of these treatments in neurological conditions. Granted, the results are probably going to be pretty subtle when compared to prednisone or whatnot. Or interferon.
So yes, very frustrated. Still waiting for my *&@#@)$* MRI results! :mad:
3 useful things to say to doctors if anxiety is brought up.
1) When Polio first appeared doctors considered it a psychosomatic condition.
2) Ask them *sarcastically* if they have penis envy. Freud's nanny apparently had MS and he diagnosed her as suffering from a type of 'female hysteria' (meanwhile she continued to become increasingly more paralyzed)
3) You can also bring in legitimate internet medical studies in i.e. PubMed stuff to substantiate any claims you may have. Make them read it! Many doctors are astoundingly ignorant. Especially GP's. They have no grasp of current clinical research.... they are at least 5-10 years behind the rest of the world. Your health should not be left in their, elitist hands alone!
You can always try homeopathic remedies too, if nothing else. Most are probably not as effective as allopathic drugs, but likely better than nothing. In my case I don't know if I should be supporting my immune system (for possible Lyme/cfs) or diminishing it (MS/etc). ??????????
Anyway, I've been taking green tea, Omega 3 fish oils, Sub-lingual vitamin B12, and curcumin lately. There are many studies that substantiate the effectiveness of these treatments in neurological conditions. Granted, the results are probably going to be pretty subtle when compared to prednisone or whatnot. Or interferon.
So yes, very frustrated. Still waiting for my *&@#@)$* MRI results! :mad:
duttin
08-07-2006, 10:26 PM
Annie,
Sorry to here that you are getting jerked around.
For starters call the diagnostic facility that done your MRI and tell them you want a copy of the MRI's and a report,they can not with hold this info you are entitled to it,same as any other test that has been done.
Since your appointment was rescheduled with a MS neuro,call the MS society in your area and explain to them your situation and ask them if there are neuro's in your area that deal with MS,they should have a list.Call them and explain that you want a second opinion.
Tremors can very well be a symptom of MS,this disease effects us differently.Not knowing can send symptoms over board.
Many of my symptoms have subsided,spacticity is chronic with pain,I do have days that this even settles down.Hang in there,I have had 2 neuro's that were rude and complete Jack ****,one I give heck to.
Theres a wealth of info here and supper support.
Toni
Sorry to here that you are getting jerked around.
For starters call the diagnostic facility that done your MRI and tell them you want a copy of the MRI's and a report,they can not with hold this info you are entitled to it,same as any other test that has been done.
Since your appointment was rescheduled with a MS neuro,call the MS society in your area and explain to them your situation and ask them if there are neuro's in your area that deal with MS,they should have a list.Call them and explain that you want a second opinion.
Tremors can very well be a symptom of MS,this disease effects us differently.Not knowing can send symptoms over board.
Many of my symptoms have subsided,spacticity is chronic with pain,I do have days that this even settles down.Hang in there,I have had 2 neuro's that were rude and complete Jack ****,one I give heck to.
Theres a wealth of info here and supper support.
Toni