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What Causes Numbness In The Body While Having Chronic Inflammatory Demyelinating Polyneuropathy?

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Posted on Tue, 10 Jan 2017
Question: I have pure motor CIDP. My main symptom is numbness. Could this be small fiber neuropathy? I am on ivig for 7 weeks and I sometimes notice a little more sensation in my fingers. How long does it take ivig to treat small fiber neuropathy?
doctor
Answered by Dr. Dariush Saghafi (1 hour later)
Brief Answer:
Cannot make assumption that you have small fiber neuropathy yet

Detailed Answer:
Good afternoon. I understand that your diagnosis is that of PURE MOTOR CIDP but now you are complaining of numbness as well over the body. You did not say anything about how long you've had the condition and when your last EMG was done. The only reason CIDP is diagnosed as PURE MOTOR is that at the time of diagnosis the EMG shows no sensory abnormalities, there are no symptoms of sensory disturbance by the patient, and then, IF there are any biopsies done of the sural or any other sensory nerve for example, no alterations or pathological changes are seen. But by no means is the diagnosis an ironclad guarantee that the disorder will always remain purely motor. It has the right as a disease to progress as it will and often times it does progress to include sensory function. So I do not think it is possible to right away hypothesize that this is a small fiber neuropathy unless there is better evidence to go against the more likely possibility that the CIDP itself is the cause of the sensory symptoms and that it may be a good time (or perhaps a few more weeks from now would be better) to get another electrical study and then, if no nerve biopsy has been obtained to get one down the road. If pathological changes can be shown present in the biopsy and the EMG is showing sensory nerve alterations then, it's almost certainly NOT a small fiber neuropathy.

At the same time it wouldn't be unreasonable to do a metabolic workup which would include serum B12, folate, Vitamin D, electrolytes, liver and renal panels, Free T4, TSH, and Total as well as Free Testosterone levels, and electrolytes just to be sure that nothing metabolic isn't possibly getting in the way and causing untoward or unexpected sensory symptoms.

So COULD this be a small fiber neuropathy? Anything is possible in the universe so I'll YES for that reason......BUT, is most likely a small fiber neuropathy? I would say definitely NO until other things have been considered and ruled out...the biggest one being the simple interval progression of the CIDP which would be neither unexpected or uncommon.

I don't quite understand your 2nd question about the IVIG because you say, "How long does it take to treat small fiber neuropathy." Did you mean to ask, "How long does it take to treat CIDP?"

The way you phrased that question almost makes me think that there is confusion between the basic elements of what is affected in CIDP vs. what exactly is SMALL FIBER NEUROPATHY. So, CIDP is really not related in any straight out or obvious way to small fiber neuropathy which is considered to be part of the autonomic nervous system while CIDP (certainly in the motor form) affects almost exclusively NERVE ROOTS and PERIPHERAL NERVES which control voluntary musculature. That's why people are weak and paralyzed if severe. Small fiber neuropathy really is unrelated to that process.

Therefore, I will choose to answer your question on IVIG with respect to its time to effect in CIDP which is typically said to be on the order of weeks to months. This is because the time delay is really dependent upon not only how well or how fast the IVIG can clear out the "BAD HUMORS" from the body but also how quickly the body can regenerate the lost myelin sheath from the affected nerves. As a rule of thumb the more severe the grading of the weakness and neuropathy at the time of treatment....THE LONGER it will take to get things going back the other way.

Also, keep in mind that there is no PERMANENT treatment known for CIDP since it is an autoimmune disease this means that the immune system will be repeatedly attacking the myelin of the nerves in the body and therefore, there will be cycles of weakness, sensory problems followed by treatments by IVIG, steroids, or plasmapheresis (or some combination)...followed by a period of convalescence when we hope things will get back on track or at least start going the other way, etc. You will then, need to return for intermittent infusions.....everyone's different some people come back every 4 weeks....some every 8 and others 2-3x/year. Just depends on your body's immune system and how active or aggressive it is against the myelin.

The idea is to find something that will blunt the immune system to constant attack and re-attack but the truth is that right now...at the level of our understanding of this disease and with the available technology it's not possible to really turn the immune system off from what it's doing to your myelin without shutting it down to other things that are necessary and beneficial....There's no known diet, exercise, or other intervention to either slow down or trick the immune system into laying low for any length of time....eventually the protein that is present in your myelin sheaths and is necessary for nerve transmission will be recognized by the immune system and it will do what it knows how to do which is attack what it thinks is foreign and unwanted. It's unclear why that signal is received by the immune system.

It's good that you're feeling more sensation in the fingers...just keep after the physical therapy and hopefully as strength starts improving so may sensation...at least that's our hope.

If you're interested here is some information on clinical trials that you can look up and even see if you qualify if you'd be interested in seeing what's new out there. There are certain things in the pipeline but nothing that's approved or even close to looking like it's going to do any better for CIDP patients than the standard therapies we have now.

NIH Patient Recruitment Office
Bethesda, Maryland
Tollfree: (800) 411-1222
TTY: (866) 411-1010
Email: YYYY@YYYY


In fact, here is the name and contact info. for a well known researcher and academician in this field who actually publishes his information for people to search him down on for more questions and to see if they may be good for clinical trials or not.
XXXXXXX A. XXXXXXX MD
Cedars-Sinai Medical Center
Dept. of Neurology
127 South San XXXXXXX Blvd
Los Angeles, CA 90048
(310)-423-1320
YYYY@YYYY


If I've provided useful and helpful information to your questions could you do me a huge favor by CLOSING THE QUERY and be sure to include some fine words of feedback along with a 5 STAR rating? Again, many thanks for posing your question and please let me know how things turn out.

Do not forget to contact me in the future at: www.bit.ly/drdariushsaghafi for additional questions, comments, or concerns having to do with this topic or others.

This query has utilized a total of 50 minutes of professional time in research, review, and synthesis for the purpose of formulating a return statement.

Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
doctor
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Follow up: Dr. Dariush Saghafi (46 minutes later)
How long does it take ivig to treat immune related small fiber neuropathy?
doctor
Answered by Dr. Dariush Saghafi (3 hours later)
Brief Answer:
Not an approved treatment at this point for SFN

Detailed Answer:
Good evening. There is 1 double blind study that is still recruiting patients into its protocol which is slated to be in progress for 6 months in terms of its treatment phase per patient with a 3 month follow up.

There are summaries of IVIG as a potential therapy that people have presented at meetings as to how theoretically it should work for SFN, however, these are not studies or cohorts of patients treated just summaries on theoretics.

Therefore, there is no answer to your question at this point until we have the results of at least the first double blind study. Stay tuned for more information.

This query has utilized a total of 110 minutes of professional time in research, review, and envoy of return response.
Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
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Follow up: Dr. Dariush Saghafi (8 minutes later)
My body feels like i feel diminished sensation throughout my body. I can still feel temperature and i can still feel a pin prick. I call it numbness because i don't know what else to call it. Can this be caused by the motor cidp? Is there another turn for this? My body feels like the feelijg when you sleep on your arm and yor whole arm goes numb and you cant feel anything. Thats what my whole body feels like. What do you think is going on?
doctor
Answered by Dr. Dariush Saghafi (1 hour later)
Brief Answer:
Sensory component present

Detailed Answer:
It sounds as if there's a possible sensory component present. Please go back to my 1st response and review...pretty clear explanation of how the component of numbness can fit into this picture in an explicable fashion.

This is seen frequently with people starting out with one presentation but then, evolving to another over time.

I agree with your description of NUMBNESS as you've delineated it and you can look at my first response to get ideas of how to work this up to see whether it's a new presentation, evolution of an old set of symptoms, or none of the body (i.e. see if the numbness now becomes persistent or if it can be managed).

If I've provided useful and helpful information to your questions could you do me a huge favor by CLOSING THE QUERY and be sure to include some fine words of feedback along with a 5 STAR rating? Again, many thanks for posing your question and please let me know how things turn out.

Do not forget to contact me in the future at: www.bit.ly/drdariushsaghafi for additional questions, comments, or concerns having to do with this topic or others.

The motor component of CIDP wouldn't be expected to cause these symptoms of numbness or lack of feeling....because a motor component affects movement of muscles. That is why I believe your description best fits that of SENSORY PROGRESSION.

It sounds as if there's a possible sensory component present. Please go back to my 1st response and review...pretty clear explanation of how the component of numbness can fit into this picture in an explicable fashion.

This is seen frequently with people starting out with one presentation but then, evolving to another over time.

I agree with your description of NUMBNESS as you've delineated it and you can look at my first response to get ideas of how to work this up to see whether it's a new presentation, evolution of an old set of symptoms, or none of the body (i.e. see if the numbness now becomes persistent or if it can be managed).

If I've provided useful and helpful information to your questions could you do me a huge favor by CLOSING THE QUERY and be sure to include some fine words of feedback along with a 5 STAR rating? Again, many thanks for posing your question and please let me know how things turn out.

Do not forget to contact me in the future at: www.bit.ly/drdariushsaghafi for additional questions, comments, or concerns having to do with this topic or others.

The motor component of CIDP wouldn't be expected to cause these symptoms of numbness or lack of feeling....because a motor component affects movement of muscles. That is why I believe your description best fits that of SENSORY PROGRESSION.

If I've provided useful and helpful information to your questions could you do me a huge favor by CLOSING THE QUERY and be sure to include some fine words of feedback along with a 5 STAR rating? Again, many thanks for posing your question and please let me know how things turn out.

Do not forget to contact me in the future at: www.bit.ly/drdariushsaghafi for additional questions, comments, or concerns having to do with this topic or others.

This query has utilized a total of 162 minutes of professional time in research, review, and synthesis for the purpose of formulating a return statement.

Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
doctor
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Follow up: Dr. Dariush Saghafi (8 minutes later)
The nerve conduction study showed demyelination of the motor nerves and a conduction block. It did not show sensory neuropathy The EMG showed nothing. Based on these results can it still be possible that my numbness is due to CIDP or something else?.
doctor
Answered by Dr. Dariush Saghafi (27 minutes later)
Brief Answer:
Answered in first response

Detailed Answer:
Good morning and thank you for the question.

Please feel free to re-read the first response I provided in addition to this one as I have given the DEFINITION of what is MOTOR CIDP vs. something else. I will try and rephrase things.

The only way we can make a diagnosis of PURE MOTOR CIDP is if:

1. The patient has NO SENSORY COMPLAINTS at the time of presentation
2. The patient has complaints and demonstrates clinical weakness on neurological examination.
3. The EMG shows no sensory nerve or reflex involvement
4. Pathology report of Sural nerve biopsy (if obtained) shows as normal.

However, (and this is important)- Fulfillment of the above criteria DOES NOT GUARANTEE that the diagnosis of MOTOR CIDP will or must stay that way forever. Things are fluid and they usually change with time.

At the moment the patient starts complaining of sensory symptoms they then, cross the threshold of having a form of CIDP which will likely be moved from what was a classification of MOTOR to MIXED.

I also gave recommendations for going through the testing of blood and so forth to check to see if any of your complaints of sensory problems could be tied to reversible or addressable causes. I also said that a sural nerve biopsy could be obtained at this point if symptoms are robust enough and if the new complaints have been persistent enough.

Therefore, the answer to your question is:

1. If you do the testing I've recommended in blood and find nothing and redo your EMG as well as get a sural nerve biopsy there is a very good chance that you will find something in one of those places to explain your symptoms

2. I would recommend holding off on the EMG/NCV for at least 3-4 more weeks and the sural nerve biopsy for at least 4-6 weeks if you just started having symptoms otherwise, you may do these studies too early to pick up things that are just changing now. Also, it gives you time to complete recommendations I made in #1 and to possibly implement treatments to see if symptoms can be reversed.

Closing the query with a 5 star rating and fine words of feedback would be greatly appreciated if you feel I've provided you with important information.

This query has utilized a total of 187 minutes of professional time in research, review, and synthesis for the purpose of formulating a return statement.
Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
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Follow up: Dr. Dariush Saghafi (2 hours later)
I will give you a five star review I just have a few more questions. I've had this numbness for 10 years now. My NCS and EMG were done 2 months ago. Could a biopsy show numbness with CIDP while the NCS and EMG just show motor neuropathy?
doctor
Answered by Dr. Dariush Saghafi (1 hour later)
Brief Answer:
Poor sensitivity of EMG/NCV in sensory neuropathy

Detailed Answer:
The sensitivity of electrical studies to detect electrical evidence of SENSORY NEUROPATHY is AT BEST 50% and often 0-10%. And as a sensory neuropathy continues through time the specific markers we look for electrically can start to disappear so that the longer a person complains of having sensory symptoms the more likely they will be to have NEGATIVE EMG/NCV showing any type of sensory nerve change.

If you were my patient and you presented with full body numbness for 10 years and I would've ruled you out for general blood and urine problems then, I would NOT have diagnosed you as having PURE MOTOR Neuropathy whether or not the EMG/NCV would've shown anything. EMG typically is a terrible test when it comes to the positive identification of sensory nerve dysfunctions and that especially includes SMALL FIBER NEUROPATHIES which are often times normal....or if EMG/NCV does show something of a sensory dysfunction it is likely to miss that diagnosis 50% of the time and possibly as high as 75-80% of the time if the patient has had the symptoms for greater than 6-12 months.

If you have had numbness for 10 years then, I would submit for either a skin PUNCH BIOPSY or sural nerve biopsy which have a better sensitivity for things rather than getting an EMG. The yield on the biopsy specimens in patients who have had widespread problems for a LONG time (such as yourself) stand at least a 50-75% of a TRUE positive result when looking for sensory alterations.

This query has utilized a total of 205 minutes of professional time in research, review, and synthesis for the purpose of formulating a return statement.
Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
doctor
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Follow up: Dr. Dariush Saghafi (15 hours later)
Can i have a sensory neuropathy that wouldnt show up on an emg, ncs, or biopsy? Can this be a pinched nerve or something of that nature? Maybe the word isnt numbness and i'm using the wrong word. Like i said i can feel temperature and a pin prick. Today i was sitting down and putting unusual pressure on my legs and after a few minutes i was able to feel sensation through my leg and into my toes. This went away after a minute. I need to know what is going on with why my body feels like its not present.
doctor
Answered by Dr. Dariush Saghafi (13 hours later)
Brief Answer:
Sensory neuropathy very difficult to show on electrical testing

Detailed Answer:
Hi again

You have essentially answered your own question as to whether or not a person can have a sensory neuropathy but does not show on electrical studies because according to your history you have had strange feelings, whether we truly can be classified as numbness or something else, and yet electrical studies from two months ago do not show any changes in sensory nerve action potential's. Therefore, it is possible and even common to find people with sensory neuropathy but does not show up on electrical studies. it is also possible that biopsies in nerves or even the skin itself may not show substantial pathology and people who complain of abnormal sensations or symptoms without other objective evidence but the idea of the biopsy is to simply provide one more opportunity to find concrete test data in order to support intentions or claimed by patients. One thing I find particularly challenging to do in most cases is to let patients know that the definition of a sensory neuropathy from a clinical perspective is simply based on what the patient says or feels since that in fact is the most sensitive test available since as I mentioned very clearly above there are no electrical study or other ways of "seeing" this type of problem on a machine. therefore, in your case and based on your history of having abnormal sensory feelings throughout the body for the last many years and independent of whether or not you can feel temperature or vibration or movement of your big toe and some direction which is called proprioception I believe you have a case of CI DP that is mixed with both objective motor findings contributing to weakness as well as sensory findings which are by history at this point.

I believe it was a potential error to call you "your motor" without verifying that in fact you have no sensory symptomatology. if you were my patient I would recommend a biopsy but I would also understand and be supportive of your decision not to do a biopsy since once again it doesn't really change treatment. Whether or not the biopsy shows the presence of sensory changes does not mean that the IV IG, plasmapheresis, or steroid regimen is that anybody might wish to prescribe then you are already getting. and so if it were me having the test done I might just as soon save myself from losing a piece of tissue that might serve some useful purpose down the road and avoid a surgical procedure which really does not seem to have much benefit associated with it in terms of how I would be treated and simply go on the basis and diagnosis of CIDP with mixed motor and sensory findings.

I hope that clarifies the questions that can actually be answered at this point. The time required for the square he is 225 minutes.
Above answer was peer-reviewed by : Dr. Vaishalee Punj
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Dr. Dariush Saghafi

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What Causes Numbness In The Body While Having Chronic Inflammatory Demyelinating Polyneuropathy?

Brief Answer: Cannot make assumption that you have small fiber neuropathy yet Detailed Answer: Good afternoon. I understand that your diagnosis is that of PURE MOTOR CIDP but now you are complaining of numbness as well over the body. You did not say anything about how long you've had the condition and when your last EMG was done. The only reason CIDP is diagnosed as PURE MOTOR is that at the time of diagnosis the EMG shows no sensory abnormalities, there are no symptoms of sensory disturbance by the patient, and then, IF there are any biopsies done of the sural or any other sensory nerve for example, no alterations or pathological changes are seen. But by no means is the diagnosis an ironclad guarantee that the disorder will always remain purely motor. It has the right as a disease to progress as it will and often times it does progress to include sensory function. So I do not think it is possible to right away hypothesize that this is a small fiber neuropathy unless there is better evidence to go against the more likely possibility that the CIDP itself is the cause of the sensory symptoms and that it may be a good time (or perhaps a few more weeks from now would be better) to get another electrical study and then, if no nerve biopsy has been obtained to get one down the road. If pathological changes can be shown present in the biopsy and the EMG is showing sensory nerve alterations then, it's almost certainly NOT a small fiber neuropathy. At the same time it wouldn't be unreasonable to do a metabolic workup which would include serum B12, folate, Vitamin D, electrolytes, liver and renal panels, Free T4, TSH, and Total as well as Free Testosterone levels, and electrolytes just to be sure that nothing metabolic isn't possibly getting in the way and causing untoward or unexpected sensory symptoms. So COULD this be a small fiber neuropathy? Anything is possible in the universe so I'll YES for that reason......BUT, is most likely a small fiber neuropathy? I would say definitely NO until other things have been considered and ruled out...the biggest one being the simple interval progression of the CIDP which would be neither unexpected or uncommon. I don't quite understand your 2nd question about the IVIG because you say, "How long does it take to treat small fiber neuropathy." Did you mean to ask, "How long does it take to treat CIDP?" The way you phrased that question almost makes me think that there is confusion between the basic elements of what is affected in CIDP vs. what exactly is SMALL FIBER NEUROPATHY. So, CIDP is really not related in any straight out or obvious way to small fiber neuropathy which is considered to be part of the autonomic nervous system while CIDP (certainly in the motor form) affects almost exclusively NERVE ROOTS and PERIPHERAL NERVES which control voluntary musculature. That's why people are weak and paralyzed if severe. Small fiber neuropathy really is unrelated to that process. Therefore, I will choose to answer your question on IVIG with respect to its time to effect in CIDP which is typically said to be on the order of weeks to months. This is because the time delay is really dependent upon not only how well or how fast the IVIG can clear out the "BAD HUMORS" from the body but also how quickly the body can regenerate the lost myelin sheath from the affected nerves. As a rule of thumb the more severe the grading of the weakness and neuropathy at the time of treatment....THE LONGER it will take to get things going back the other way. Also, keep in mind that there is no PERMANENT treatment known for CIDP since it is an autoimmune disease this means that the immune system will be repeatedly attacking the myelin of the nerves in the body and therefore, there will be cycles of weakness, sensory problems followed by treatments by IVIG, steroids, or plasmapheresis (or some combination)...followed by a period of convalescence when we hope things will get back on track or at least start going the other way, etc. You will then, need to return for intermittent infusions.....everyone's different some people come back every 4 weeks....some every 8 and others 2-3x/year. Just depends on your body's immune system and how active or aggressive it is against the myelin. The idea is to find something that will blunt the immune system to constant attack and re-attack but the truth is that right now...at the level of our understanding of this disease and with the available technology it's not possible to really turn the immune system off from what it's doing to your myelin without shutting it down to other things that are necessary and beneficial....There's no known diet, exercise, or other intervention to either slow down or trick the immune system into laying low for any length of time....eventually the protein that is present in your myelin sheaths and is necessary for nerve transmission will be recognized by the immune system and it will do what it knows how to do which is attack what it thinks is foreign and unwanted. It's unclear why that signal is received by the immune system. It's good that you're feeling more sensation in the fingers...just keep after the physical therapy and hopefully as strength starts improving so may sensation...at least that's our hope. If you're interested here is some information on clinical trials that you can look up and even see if you qualify if you'd be interested in seeing what's new out there. There are certain things in the pipeline but nothing that's approved or even close to looking like it's going to do any better for CIDP patients than the standard therapies we have now. NIH Patient Recruitment Office Bethesda, Maryland Tollfree: (800) 411-1222 TTY: (866) 411-1010 Email: YYYY@YYYY In fact, here is the name and contact info. for a well known researcher and academician in this field who actually publishes his information for people to search him down on for more questions and to see if they may be good for clinical trials or not. XXXXXXX A. XXXXXXX MD Cedars-Sinai Medical Center Dept. of Neurology 127 South San XXXXXXX Blvd Los Angeles, CA 90048 (310)-423-1320 YYYY@YYYY If I've provided useful and helpful information to your questions could you do me a huge favor by CLOSING THE QUERY and be sure to include some fine words of feedback along with a 5 STAR rating? Again, many thanks for posing your question and please let me know how things turn out. Do not forget to contact me in the future at: www.bit.ly/drdariushsaghafi for additional questions, comments, or concerns having to do with this topic or others. This query has utilized a total of 50 minutes of professional time in research, review, and synthesis for the purpose of formulating a return statement.