Charcot-Marie-Tooth UK
1,215 members492 posts


I have been wondering if I might have lupas as after reading about the symptoms,I thought they sounded like a lot of mine, but I would like to hear from someone who has definately got it about their symptoms before I go to my doctor. I was diagnosed with CMT about 12 years ago but they couldn't tell me what type it was and I'm wondering now if the doctor got it wrong.

1 Reply

Hello to Strawberry Shortcake >>>> (Sorry, if my 'blog' is so long)

It is my opinion that you appear to be seeking medical advice on Lupus, BEFORE your first consultation with your own NHS local G.P.

HealthUnlocked does not replace the relationship between you, and your doctors, or other any healthcare professionals, nor the advice you may receive from them.

The internet should not be used to diagnose any medical conditions(s):

Remember that, your own personal G.P. is the "key" to gain access to the vast range of the UK's NHS Medical Diagnostic Services:

Action No.1> Ask your G.P. to write to the NHS Neurologist who first diagnosed that you have C.m.t. and ask them, to confirm exactly is the 'Sub-Type', that you actually have ?

Action No. 2> As for your concern's that you may have Lupus:

The most common symptoms of Lupus are,

>Extreme fatigue (possible link to Cmt ?):

>Painful or swollen joints Link (possible link to Cmt ?):

>Is Lupus an 'Inherited' disease (possible link to Cmt ? ):

>Red rash, or color change on the face (No link to Cmt):

>Chest pain, upon deep breathing (No link to Cmt):

>Unusual hair loss (No link to Cmt)

>Unexplained fever (No link to Cmt):

>Pale, or purple fingers or toes from cold or stress (Raynaud's Phenomenon)

>Sensitivity to the sun (No link to Cmt):

>Swelling (edema) in legs, or around eyes, etc. (No link to Cmt):

>Swollen glands (No link to Cmt):

>All these symptoms can come or go, and can range from being mild to severe:

>Most lupus patients have a combination of the above symptoms:

Lupus is a chronic and complex, and is often very difficult for a Consultant Rheumatologist to diagnose this disease:

However, Cmt disease will require the expertise of a NHS Neurologist to correctly diagnose this disease, and its particular 'Sub-Type':

There is not, any one single laboratory test that can determine if a person has Lupus:

To complicate matters further, many symptoms of lupus are similar to those of many other diseases, and they also, can come and go over weeks and months:

It can often take years for the correct diagnosis to be made:

To diagnose lupus, a doctor should be able to find a physical, or laboratory evidence of the condition, such as swelling of joints, protein in the urine, fluid around the lungs or heart, or a skin biopsy (test of a skin sample) that shows evidence of this disease. The doctor also will look at a patients’s previous medical history, and arrange special tests to rule out other diseases:

Keep Health Unlocked's readers informed of your progress:

Ps ! I have today 04/11/2014, just returned from a consultaion with a Consultant Dermatologist, who is also trying to establish if there

is any Hereditary link between Cmt, and my own facial skin problem ?

Wowee ! What will Cmt disease be blamed for next ?

Let's us all see what his investigations reveal, as I am aware that over recent years, many more Cmt sufferers, are suggesting / blameing / asking, does their Cmt disease cause many more unexplicable medical problems ? ? ?

Cmt is a genetic disorder, where the main gene involved is the one that makes our Peripheral Myelin Protein (PMP-22), and which is located on Cmt sufferers chromosome 17.


You may also like...