[sws1]

Hi all, I am a 20 year old student on medical leave. I have been seen by a neuro who completely disregarded my GAD65 result of 29.9 nmol/L because of my cocurrent type one diabetes (diagnosed 8 years ago), despite the fact that I have an EMG confirmed complete left leg numbness for now two months (in my report as left lateral femoral cutaneous neuropathy). Should I seek a second opinion for Stiff Person Syndrome, and if so - are there recommendations for neurologists? I am located in Minnesota but have seen a Mayo Clinic neurologist, the one that completely would not listen to me about GAD65 and my symptoms, despite the positive EMG in combination with my positive GAD65, which is much higher than it should be for just T1D.

Any advice would be very helpful. I have not heard of just numbness for SPS, but I am young, and am wondering if we have caught this before other symptoms are on their way.

Thank you for any help you have to offer!

[Neurochic]

Originally Posted by spse

Hi all, I am a 20 year old student on medical leave. I have been seen by a neuro who completely disregarded my GAD65 result of 29.9 nmol/L because of my cocurrent type one diabetes (diagnosed 8 years ago), despite the fact that I have an EMG confirmed complete left leg numbness for now two months (in my report as left lateral femoral cutaneous neuropathy). Should I seek a second opinion for Stiff Person Syndrome, and if so - are there recommendations for neurologists? I am located in Minnesota but have seen a Mayo Clinic neurologist, the one that completely would not listen to me about GAD65 and my symptoms, despite the positive EMG in combination with my positive GAD65, which is much higher than it should be for just T1D.

Any advice would be very helpful. I have not heard of just numbness for SPS, but I am young, and am wondering if we have caught this before other symptoms are on their way.

Thank you for any help you have to offer!

I really don't think that you need to worry about SPS. Firstly, it is extremely rare and, secondly, you don't have any of the clinical signs and symptoms of SPS. A diagnosis isn't made on the GAD 65 levels alone - that's just one clinical sign and you don't have any of the others.

What you are describing happening with your leg isn't a clinical sign or symptom of SPS - its truly nothing like the signs and symptoms of SPS. The diagnosis you have from your EMG results is also known as meralgia paraesthetica. Its classed as a chronic neurological condition but it often has a mechanical cause or it can result from neuropathy - including diabetic neuropathy. A mechanical cause can be something problematic like a tumour, or something simple like a bony growth or a ligament impinging or damaging the femoral nerve after it exits your spine. It can also be caused by trauma such as a seatbelt tightening across the waist in a car crash. Its very frequently caused when people have belts and waistbands or clothing that is too tight. It has even been referred to as 'skinny pants syndrome' because of the fashion for skin tight pants and jeans especially ones with low waists causing the problem in teenagers/young people. Being overweight or underweight can cause the condition to develop too as it can create pressure on the femoral nerve. Long periods of standing or leg exercise that put pressure on certain ligaments can cause it. Its a localised condition not a central condition like SPS. SPS also produces certain particular patterns on an EMG.

The raised levels of GAD 65 can be caused by a number of conditions including Type 1 diabetes but between 20% and 30% of SPS patients show no GAD 65 markers at all so its not as definitive as some of the information out there might suggest to you and the measurement of what constitutes high isn't entirely straightforward.

There are lots of things that can be done to treat femoral cutaneous neuropathy - physio, NSAIDS, exercise, wearing loose clothing, losing weight/gaining weight, stretches, ice/heat and so on. Ultimately for some people surgery is used as a last resort to decompress a nerve that is being mechanically compressed. If the neuropathy has been caused by your diabetes then that may be more difficult to treat and manage because the damage may not all be reversible.

It would make sense to go back and discuss your current doctor's recommended treatment(s) for your femoral cutaneous neuropathy with him/her so that you fully understand whether they believe the cause is mechanical or a result of previous poor blood sugar control. If they think its got a mechanical cause because of your history and presentation, they may decide to do more tests to determine the precise cause. These could be tests such as an x-ray, physical exam or MRI. Be absolutely fastidious about your diabetes management going forward too because I'm sure you know very well how disastrous the consequences of neuropathy from poorly managed blood sugar levels can be.

I hope that allows you to stop worrying about the possibility of SPS.