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Two years and no diagnosis, part deux.
I am re posting this with the proper spacing in between paragraphs to make it easier to read, sorry about the first post.
Hi, I am new to the forum and have a great deal of information to convey so please bear with me...
In October of 2012 I was hospitalized for 11 days with kidney failure, sepsis, diabetes and pneumonia. Upon discharge I began to experience a variety of symptoms that have become progressively worse and more numerous over the past 2 + years.
My symptoms include stabbing, burning, tearing pains throughout my body, dizziness, fatigue, headaches, numbness, clonus, heat sensitivity, short term memory issues, balance problems, blurred vision in one eye or the other along with stabbing pain, foot drop, muscle twitching and painful spasms and electric shock sensations in my arms and legs.
I have stage 3 CKD and my A1c is 6.9. I have also recently been diagnosed with PAD. The first neurologist I saw was nasty and dismissive and refused to do any tests. In fact he held brain scans up to the window and said, "See, these are people that ACTUALLY have a problem."
The second neurologist wasn't much better and spent much of my appointment on the phone and each time I mentioned a symptom he would loudly say, "Next". At the end of the appointment he wasn't going to order any tests but I told him that I dream that I am being tortured and wake up screaming from the pain and I begged him to order an MRI and he reluctantly agreed.
The MRI did not reveal any lesions but several doctors have told me that there are several areas deep in my brain that they are watching but do not think it is anything serious.
My new and wonderful Primary referred me to a third neurologist and asked her to order an upper and lower EMG so she referred me to a physiatrist.
The EMG report reads as follows, Severe sensorimotor demyelinating neuropathy in the upper and lower extremities. This is predominately axonal in lesion in the lower extremities with evidence of demyelination. In the upper extremities, this is predominately demyelinating with some evidence of axonal loss.
When I returned to the neurologist for a follow up she told me that I have diabetic neuropathy. Each time I asked for an explanation for the other symptoms I have been experiencing (dizziness, pain in other areas of my body, fatigue, heat sensitivity, clonus etc.) she told me that they are being caused by uremia. She then refused to do any other tests and wanted to prescribe lyrica or gabapentin and when I refused the medication she became very annoyed.
At the end of the appointment she said, "Since you don't want to take the medication, then I'm not treating you for anything and there is no point scheduling another appointment”.
My kidney function has been consistently within stage 3 parameters and my Primary told me he didn't think uremia was possible. He called and spoke to my nephrologist and when he mentioned the uremia diagnosis my nephrologist promptly responded, "Nope, not a chance".
My Primary told me he would call the neurologist to discuss all of this but he didn't seem hopeful that she would reconsider her diagnosis. I spoke to my Primary about MS and CIDP and he mentioned having a lumbar puncture done and told me he would try to find another neurologist.
Recent blood tests revealed that my rheumatoid factor and my IGm were somewhat elevated. I have tested negative for HIV, Lyme, RA, Lupus, Sjogrens, Scleroderma and Polymyosistis etc. In addition all of my vitamin and mineral levels are fine.
Before finding my current PCP I saw an internist who spent less than five minutes talking to me, did no examination and then said, "You have been to all of these doctors, there is nothing wrong with you, you are just depressed and these symptoms are psychosomatic".
That was the first and last visit with her and not long after I was diagnosed with PAD and severe neuropathy. It is so frustrating and heartbreaking dealing with doctors who have no compassion and don't want to be bothered or put in any effort in diagnosing me.
I am very thankful that I found my new Primary, he is compassionate, open minded and most importantly he actually listens to me.
I would welcome and appreciate any ideas or comments regarding what I am experiencing, thanks so much for taking the time to read all of this, I really appreciate it!
Hi, I am new to the forum and have a great deal of information to convey so please bear with me...
In October of 2012 I was hospitalized for 11 days with kidney failure, sepsis, diabetes and pneumonia. Upon discharge I began to experience a variety of symptoms that have become progressively worse and more numerous over the past 2 + years.
My symptoms include stabbing, burning, tearing pains throughout my body, dizziness, fatigue, headaches, numbness, clonus, heat sensitivity, short term memory issues, balance problems, blurred vision in one eye or the other along with stabbing pain, foot drop, muscle twitching and painful spasms and electric shock sensations in my arms and legs.
I have stage 3 CKD and my A1c is 6.9. I have also recently been diagnosed with PAD. The first neurologist I saw was nasty and dismissive and refused to do any tests. In fact he held brain scans up to the window and said, "See, these are people that ACTUALLY have a problem."
The second neurologist wasn't much better and spent much of my appointment on the phone and each time I mentioned a symptom he would loudly say, "Next". At the end of the appointment he wasn't going to order any tests but I told him that I dream that I am being tortured and wake up screaming from the pain and I begged him to order an MRI and he reluctantly agreed.
The MRI did not reveal any lesions but several doctors have told me that there are several areas deep in my brain that they are watching but do not think it is anything serious.
My new and wonderful Primary referred me to a third neurologist and asked her to order an upper and lower EMG so she referred me to a physiatrist.
The EMG report reads as follows, Severe sensorimotor demyelinating neuropathy in the upper and lower extremities. This is predominately axonal in lesion in the lower extremities with evidence of demyelination. In the upper extremities, this is predominately demyelinating with some evidence of axonal loss.
When I returned to the neurologist for a follow up she told me that I have diabetic neuropathy. Each time I asked for an explanation for the other symptoms I have been experiencing (dizziness, pain in other areas of my body, fatigue, heat sensitivity, clonus etc.) she told me that they are being caused by uremia. She then refused to do any other tests and wanted to prescribe lyrica or gabapentin and when I refused the medication she became very annoyed.
At the end of the appointment she said, "Since you don't want to take the medication, then I'm not treating you for anything and there is no point scheduling another appointment”.
My kidney function has been consistently within stage 3 parameters and my Primary told me he didn't think uremia was possible. He called and spoke to my nephrologist and when he mentioned the uremia diagnosis my nephrologist promptly responded, "Nope, not a chance".
My Primary told me he would call the neurologist to discuss all of this but he didn't seem hopeful that she would reconsider her diagnosis. I spoke to my Primary about MS and CIDP and he mentioned having a lumbar puncture done and told me he would try to find another neurologist.
Recent blood tests revealed that my rheumatoid factor and my IGm were somewhat elevated. I have tested negative for HIV, Lyme, RA, Lupus, Sjogrens, Scleroderma and Polymyosistis etc. In addition all of my vitamin and mineral levels are fine.
Before finding my current PCP I saw an internist who spent less than five minutes talking to me, did no examination and then said, "You have been to all of these doctors, there is nothing wrong with you, you are just depressed and these symptoms are psychosomatic".
That was the first and last visit with her and not long after I was diagnosed with PAD and severe neuropathy. It is so frustrating and heartbreaking dealing with doctors who have no compassion and don't want to be bothered or put in any effort in diagnosing me.
I am very thankful that I found my new Primary, he is compassionate, open minded and most importantly he actually listens to me.
I would welcome and appreciate any ideas or comments regarding what I am experiencing, thanks so much for taking the time to read all of this, I really appreciate it!
COMMUNITY LEADER
Hi and welcome,
I honestly don't believe MS is something you need to consider, simply because you don't have brain lesions, and none of your diagnosed conditions (kidney failure - stage 3 CKD, Diabetes, PAD, severe neuropathy) are actually associated with MS, but CIDP 'could be' possible because of the association.....
CIDP
"The tests required for the diagnosis usually involve EMG/NCS to study the way in which the nerves are functioning. A spinal tap if often performed and in some cases a muscle and nerve biopsy is required. This disease seems to be more common in patients with diabetes and therefore anyone with diabetes who has symptoms of a neuropathy which are progressing quickly should be evaluated by a neurologist with expertise in neuromuscular " http://www.phoenixneurology.com/specialties/cidp.php
Additionally you already have diagnostic evidence that is suggesting demyelinating neuropathy but MS wouldn't be consistent.....
"The EMG report reads as follows, Severe sensorimotor demyelinating neuropathy in the upper and lower extremities. This is predominately axonal in lesion in the lower extremities with evidence of demyelination. In the upper extremities, this is predominately demyelinating with some evidence of axonal loss. "
I know you mentioned... "My kidney function has been consistently within stage 3 parameters and my Primary told me he didn't think uremia was possible. He called and spoke to my nephrologist and when he mentioned the uremia diagnosis my nephrologist promptly responded, "Nope, not a chance".......but Uremic Neuropathy is one of the differentials for CIDP so your primary wasn't totally off, see below.
http://emedicine.medscape.com/article/1172965-differential
Symptoms are often not specific enough to be highly suggest neurological causation, and when you've got multiple medical issues with symptoms overlapping it gets even harder. Abnormal clinical signs are more suggestive of neurological conditions like MS and you do mention Clonus and Foot drop which are generally abnormal 'clinical sign' associated with MS but both Clonus and Foot drop are connected to the your already dx conditions eg clonus - Renal failure, Foot drop - Diabetes.
I genuinely don't see MS outside of everything you already know, but i do think you should get the health of your eyes assessed by an ophthalmologist, it is possible there will be diagnostic evidence. I also think you should locate a CIPD or sensorimotor demyelinating neuropathy specialist for their expert opinion because i don't believe the neurologists you've seen are reliable at all!
CHeers...........JJ
I honestly don't believe MS is something you need to consider, simply because you don't have brain lesions, and none of your diagnosed conditions (kidney failure - stage 3 CKD, Diabetes, PAD, severe neuropathy) are actually associated with MS, but CIDP 'could be' possible because of the association.....
CIDP
"The tests required for the diagnosis usually involve EMG/NCS to study the way in which the nerves are functioning. A spinal tap if often performed and in some cases a muscle and nerve biopsy is required. This disease seems to be more common in patients with diabetes and therefore anyone with diabetes who has symptoms of a neuropathy which are progressing quickly should be evaluated by a neurologist with expertise in neuromuscular " http://www.phoenixneurology.com/specialties/cidp.php
Additionally you already have diagnostic evidence that is suggesting demyelinating neuropathy but MS wouldn't be consistent.....
"The EMG report reads as follows, Severe sensorimotor demyelinating neuropathy in the upper and lower extremities. This is predominately axonal in lesion in the lower extremities with evidence of demyelination. In the upper extremities, this is predominately demyelinating with some evidence of axonal loss. "
I know you mentioned... "My kidney function has been consistently within stage 3 parameters and my Primary told me he didn't think uremia was possible. He called and spoke to my nephrologist and when he mentioned the uremia diagnosis my nephrologist promptly responded, "Nope, not a chance".......but Uremic Neuropathy is one of the differentials for CIDP so your primary wasn't totally off, see below.
http://emedicine.medscape.com/article/1172965-differential
Symptoms are often not specific enough to be highly suggest neurological causation, and when you've got multiple medical issues with symptoms overlapping it gets even harder. Abnormal clinical signs are more suggestive of neurological conditions like MS and you do mention Clonus and Foot drop which are generally abnormal 'clinical sign' associated with MS but both Clonus and Foot drop are connected to the your already dx conditions eg clonus - Renal failure, Foot drop - Diabetes.
I genuinely don't see MS outside of everything you already know, but i do think you should get the health of your eyes assessed by an ophthalmologist, it is possible there will be diagnostic evidence. I also think you should locate a CIPD or sensorimotor demyelinating neuropathy specialist for their expert opinion because i don't believe the neurologists you've seen are reliable at all!
CHeers...........JJ
Hi Alex,
Thanks for the response to my letter. PAD is Peripheral Artery Disease.
It sounds like you have had a tough time of it too, I am so sorry to hear about the MS and Cancer diagnosis.
Most of my life I have avoided going to the doctor too, in fact I waited nearly 3 days to go to the hospital when my kidneys failed because I was hoping it would go away without treatment, the ER doctor told me if I had waited much longer I wouldn't have survived.
I believe what you are saying is very true, doctor's don't seem to like their patients to be informed, don't appreciate answering questions and are looking for an easy way out. The second Neurologist I saw told me that I have a mix of neurological and non neurological symptoms but nothing that fits in a neat little box, then he dismissed me.
As for the medication I really want an accurate diagnosis before I decide what to do, I am concerned with muddying the diagnostic waters so to speak.
Multiple neurologists seems to be a reoccurring theme in the MS world. Both my friend and my cousin each saw several neurologists before finding one willing to help and both were eventually diagnosed with MS.
I understand what you mean about being stoic, I too feel the same way. I don't complain about my symptoms I just speak rationally and factually about what is happening, the duration, severity etc. and this is often met with disbelief, it's very frustrating.
I have just recently obtained a handicap parking permit (I was embarrassed to ask my PCP) and it is difficult to accept that I am unable to do what I once did so easily. My 80 year mother can walk faster than me.
Once again thanks for taking the time to respond, it's good to know that there are other people in the world that have had similar experiences, makes it a bit easier to put things into perspective.
Best wishes,
Leslie
Thanks for the response to my letter. PAD is Peripheral Artery Disease.
It sounds like you have had a tough time of it too, I am so sorry to hear about the MS and Cancer diagnosis.
Most of my life I have avoided going to the doctor too, in fact I waited nearly 3 days to go to the hospital when my kidneys failed because I was hoping it would go away without treatment, the ER doctor told me if I had waited much longer I wouldn't have survived.
I believe what you are saying is very true, doctor's don't seem to like their patients to be informed, don't appreciate answering questions and are looking for an easy way out. The second Neurologist I saw told me that I have a mix of neurological and non neurological symptoms but nothing that fits in a neat little box, then he dismissed me.
As for the medication I really want an accurate diagnosis before I decide what to do, I am concerned with muddying the diagnostic waters so to speak.
Multiple neurologists seems to be a reoccurring theme in the MS world. Both my friend and my cousin each saw several neurologists before finding one willing to help and both were eventually diagnosed with MS.
I understand what you mean about being stoic, I too feel the same way. I don't complain about my symptoms I just speak rationally and factually about what is happening, the duration, severity etc. and this is often met with disbelief, it's very frustrating.
I have just recently obtained a handicap parking permit (I was embarrassed to ask my PCP) and it is difficult to accept that I am unable to do what I once did so easily. My 80 year mother can walk faster than me.
Once again thanks for taking the time to respond, it's good to know that there are other people in the world that have had similar experiences, makes it a bit easier to put things into perspective.
Best wishes,
Leslie
I am sorry I do not know what PAD is.
Sounds like a new neurologist is needed. The medications the neurologist offered are common to MS patients. They will not mask MS symptoms if that is what concerns you. Some doctors get frustrated if they feel there is nothing they can do.
In doctor speak mental issues means I can't figure out what is wrong. Also doctors like easy cases. The more medical issues the less they like it. My pcp admitted she did not want me as a patient with all my illnesses because she thought I would be needy. She is surprised because I am stoic and only go to the doctor as a last resort.
I was labeled a hypochondriac until I was diagnosed with MS then a late stage cancer. It took longer to be diagnosed with cancer than MS partly because I did not make a fuss. I walked around with a bucket for two years. I waited until I could eat nothing at all to raise a fuss.
Sounds like you have had a lot of tests. Sounds like you have done a lot of research. Some doctors do not like that. I questioned one neurologist as to why she was not testing me for MS she through me out and said I did not need to come back. She wrote my pcp saying that it was not MS. I went to several different neurologists before I was diagnosed.
You know something is wrong so keep going until you get the answer you want. I made the mistake of waiting until I was diagnosed to take medications for symptoms. I thought when I was diagnosed the doctor would be able to give me medication to stop the symptoms of MS. Sdaly I have to live with most of my symptoms. The drugs help. A big part of MS is getting used to somethings not being able to be fixed. Most of my issues are nerve damage so I just live with things like double vision, vertigo, cognitive issues, trouble walking, and fatigue. I used to out walk my husband now I can't catch up to him.
Alex
Sounds like a new neurologist is needed. The medications the neurologist offered are common to MS patients. They will not mask MS symptoms if that is what concerns you. Some doctors get frustrated if they feel there is nothing they can do.
In doctor speak mental issues means I can't figure out what is wrong. Also doctors like easy cases. The more medical issues the less they like it. My pcp admitted she did not want me as a patient with all my illnesses because she thought I would be needy. She is surprised because I am stoic and only go to the doctor as a last resort.
I was labeled a hypochondriac until I was diagnosed with MS then a late stage cancer. It took longer to be diagnosed with cancer than MS partly because I did not make a fuss. I walked around with a bucket for two years. I waited until I could eat nothing at all to raise a fuss.
Sounds like you have had a lot of tests. Sounds like you have done a lot of research. Some doctors do not like that. I questioned one neurologist as to why she was not testing me for MS she through me out and said I did not need to come back. She wrote my pcp saying that it was not MS. I went to several different neurologists before I was diagnosed.
You know something is wrong so keep going until you get the answer you want. I made the mistake of waiting until I was diagnosed to take medications for symptoms. I thought when I was diagnosed the doctor would be able to give me medication to stop the symptoms of MS. Sdaly I have to live with most of my symptoms. The drugs help. A big part of MS is getting used to somethings not being able to be fixed. Most of my issues are nerve damage so I just live with things like double vision, vertigo, cognitive issues, trouble walking, and fatigue. I used to out walk my husband now I can't catch up to him.
Alex
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