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Have POTS. On Plaquenil. Feeling Tingling And Hurting Pin Prick Feet And Muscle Pain. Diagnosed Fibermyalgia. What Should I Do?

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Posted on Thu, 22 Aug 2013
Question: So I am a little upset. I have POTS. and I am very knowledable in my "disease" or syndrome whatever you may call it. And I have also possible autoimmune in which I am on Plaquenil.

I have had the following symptoms of tingling feet hurting pin prick feet. Muscle pain (right now in my upper thighs that feels like a bruise when pressed on)
I also sometimes get muscle twitching but that has decreased ALOT

anyway I had a skin biopsy which was negative for Small Fiber Neuropathy
they also did a Thermoregulatory Sweat test which was Negative
I had a QSART and was slightly abnormal but not by much which is why I had the other two tests done that we re negative

I am upset because i have these symptoms ; symptoms OF SFN and nobody is helping me due to my negative test results. . . honestly I feel I have this. I have POTS AND possible autoimmune which leads in the direction and more at risk for Small fiber neuropathy and SINCE my doctors wont refer me and dont believe I have this ....what else can I do?

one doctor just tells me I have fibermyalgia .

I put myself on a Vitamin B complex and Alpha Lipoic Acid........
doctor
Answered by Dr. Dr. Shruti Rijhwani (54 minutes later)
Dear Madam,

Thank you for posting your query on XXXXXXX

Well looking into your problem I see that that you are having POTS and numbness and tingling senastion which you think is small fibre neuropathy .

You didint mention the autoimmune disease for which you are taking hydroxychloroquine . One thing I will like to know that whether your XXXXXXX , ENA profile , complement levels , Anti ds DNA antibody have been done. Kindly let me know of your antibody profile.

You tingling can be a manifestation of autoimmune disease from which you are suffering . You can take vitamin b and alpha lipoic acid . There is no harm in this.
One thing more get your vitamin B 12 levels tested.

Wish you good health.

Take care.

Dr. Shruti
Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
doctor
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Follow up: Dr. Dr. Shruti Rijhwani (7 minutes later)
thanks my XXXXXXX was 1:160 speckeled THey have done SO many antibodies these are them below-

SM-ANtibody
RNP
SSA
SSB
Centromere
Scleroderma Ab
Jo1
Ribosomal RNP
Chromatin
ALL WERE NEGATIVE

they also tested me for thyroid autoantibodies which were negative
CRP 0.1
SED rate at one point was 29 but 2nd test down to 20
I was put on plaquenil due to symptoms that are lupus type symptoms and I have had improvement but not ALOT ive been on it for 4.5 months

B12- I had checked it was actually high!? it was 1054 with normal range 221-700 I found that odd.

Vitamin D is low
I never had compliment levels drawn.
I do have polycolonal gammapathy for unknown reason and thats about it
Normal CBC/BMP/MG
doctor
Answered by Dr. Dr. Shruti Rijhwani (10 minutes later)
Dear Madam,

Autoimmune diseases are always evolving . At one time you have no symptoms you can develop it later also. Complement levels and Anti dsDNA are important for diagnosis of lupus . And yes lupus may result in all these symptoms. Even Hydroxy chloroquine may lead to such symptoms rarely .

Can you give me details about your polyclonal gammopathy.

Take care.

Dr. Shruti
Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
doctor
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Follow up: Dr. Dr. Shruti Rijhwani (8 minutes later)
IgG- 1570 Normal - 717-1411
IgA- 216 Normal 78-391
IgM 222 Normal 53-334

then the SPEP Was as follows
Total Protein 7.9- Normal 6.0-8.4
Albumin for SPE 3.93 - Normal 3.37-4.23
Alpha 1 Globulin 0.22 Normal 0.18-0.31
Alpha 2 Globulin 0.84 Normal 0.52- 0.97
Beta Globulin 1.16 Normal 0.84-1.36
Gamma Globulin 1.73 Normal 0.7-1.44 <---- High
Interpretation (Prot Electro)     No definitive M protein is identified on protein electrophoresis.
Polyclonal hypergammaglobulinemia is present.

M-Protein Location     N/A                
M-Protein Concentration     0.00

thats what it all says :)
doctor
Answered by Dr. Dr. Shruti Rijhwani (16 minutes later)
Dear Madam,

I dont think it is responsible for your symptoms. You have already been thoroughly investigated . Just let me know the reports for complements and anti ds DNA .

Dr. Shruti
Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
doctor
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Follow up: Dr. Dr. Shruti Rijhwani (2 minutes later)
is what I posted above POLYcolonal or MONOcolonal I dont understand the difference
and I will ask my doctor regarding Complement and dsDNA she has never tested
doctor
Answered by Dr. Dr. Shruti Rijhwani (12 minutes later)
Dear Madam,

Kindly let me know of the reports as soon as they are available.

Take care.

Dr. Shruti
Note: For more detailed guidance, please consult an Internal Medicine Specialist, with your latest reports. Click here..

Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
doctor
Answered by
Dr.
Dr. Dr. Shruti Rijhwani

Rheumatologist

Practicing since :2008

Answered : 2366 Questions

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Have POTS. On Plaquenil. Feeling Tingling And Hurting Pin Prick Feet And Muscle Pain. Diagnosed Fibermyalgia. What Should I Do?

Dear Madam,

Thank you for posting your query on XXXXXXX

Well looking into your problem I see that that you are having POTS and numbness and tingling senastion which you think is small fibre neuropathy .

You didint mention the autoimmune disease for which you are taking hydroxychloroquine . One thing I will like to know that whether your XXXXXXX , ENA profile , complement levels , Anti ds DNA antibody have been done. Kindly let me know of your antibody profile.

You tingling can be a manifestation of autoimmune disease from which you are suffering . You can take vitamin b and alpha lipoic acid . There is no harm in this.
One thing more get your vitamin B 12 levels tested.

Wish you good health.

Take care.

Dr. Shruti