NEUROPATHY OR MS

[KTM94]

I was diagnosed with Peripheral Neuropathy (sensory)but I am experiencing numbness in my groin area (female) and also there is a patch on my head/scalp thats gone numb and my mouth area is numb as well.  I have learned to live with my symptons that come along with the neuropathy but I dont know too much about MS.  Has anyone else here experience these symptoms along with other symptoms of your MS?  Any insight would be appreciated.

[Joiedecour]

Another thought is that neuropathy, I think, sometimes can be helped by eating gluten-free. Maybe someone else can confirm this, but I think Polly here has ms symptoms and possibly gluten ataxia??? Hope someone else can confirm for you.

[KTM94]

Thank you all for the feedback.  I am currently on Lyrica 300mg a day and it does help subside the pain and tingling in a minor way leaving me just to deal with the numbess and heaviness in my legs...although again nothing is being explained about the numbess of my scalp or the numbness of my face surrounding my mouth. I have had EMG and nerve conduction testing.
Also I would like to clarify that I do have an underlying condition in which I was told were the cause of my development of peripheral neuropathy being noted that its typical for people living with my illness to develop it, but as I said before it just seems that there is more going on that just that. I have also posted in the brain/pituitary tumor forum as I have undergone 4 brain surgeries of the pituitary gland, but they say it is in no way related. I will speak more in depth with my neurologist about addition testing.  Again thanks to all for responding and if anyone else has anything additional to offer I would appreciate it as well.

[rendean]

Early in the course of my diagnosis, I had a general Neuro tell me I had peripheral neuropathy based on EMG testing but when it spread he re-tested and decided against that diagnosis and started helping me find an MS neuro.

4 years later that diagnosis came but with lots of incorrect diagnoses in the meantime.

Wishing you luck in your hunt for the real cause of your symptoms. Small fiber neuropathy usually does not affect the head as Alex already pointed out.

Ren

[HVAC]

Is the doctor who diagnosed you with ON a Neurologist? If not I would see a Neurologist. Neurologist specialize so I would get one who specializes in MS if that is your worry. They can tell with a Neurological exam if you have PN or your Neuropathy comes from the Central Nervous System. The reason I know is I have MS and I am on chemo which can cause PN. I am diagnosed with MS. My MS Specialist was able to say the Neuropathy in my hands and feet comes from my CNS was not PN. He use a tuning fork on my feet and hands.

There are many illness and medications which cause PN. There are also over 800 Neurological disorders. This is why it is so hard to figure out.

If your symptoms are bothering you do they have you on any medication?

I get numbness in my groin. If you are having symptoms as high as your head it probably is not PN since your head is CNS.

Alex

[essdipity]

Well, I'll chime in here and muddy the waters even further. I have seen PN described as both a diagnosis and a symptom here in the US. Technically I think it should be a symptom, but there are times when either the ultimate cause cannot be determined or the neuropathy is very pervasive and also the only symptom, so the diagnosis is PN. The father of someone I know had gradually grown totally numb, starting with his feet, and last I heard it had reached his upper thighs. Without another medical explanation, this was called PN. (Symptom becomes diagnosis).

I'm not sure that this is considered good medical practice, and I don't know if it sometimes results from confusion by the patient, whose doctor gives him the medical name of the symptom but stops there because the cause isn't clear. There are other similar situations. A patient might say he has TMJ, but in reality everyone has it, since that stands for tempomandibular joint, the joints in our jaws. What he might have is TMJ disorder. Headaches are also a symptom, but if they're migraines that's a diagnosis. Lots of obfuscation :-) in medical situations.

Okay, yak yak, my real point is that it's quite possible to have peripheral neuropathy as well as CNS neuropathy (from MS). I do, to a minor extent. Nerve conduction testing didn't show this, but my neuro insists I have small fiber neuropathy in my feet. SFN is always a peripheral issue.

And just to confuse things even more, neuropathic pain is considered to be the result of peripheral neuropathy, hence not central, hence not MS. But in the MS world we often have neuropathy which we call neuropathic pain. It's one of my biggest issues, personally. For MS purposes, if we get actual pain, as opposed to tingling, etc.,as a paresthesia, this is a form of central neuropathy.,

So KTM could have peripheral neuropathy as generally understood, though she doesn't say what testing was done to show this; OR her doctor could be wrong and it's central, as she has central symptoms in groin, scalp and mouth; OR she could have both. Everything she mentions is often seen in MS, so I'm betting on central as the cause.

Much more testing is needed, though, as symptoms reported by the patient are only one part of the equation. The neurologist must observe signs--objective manifestations-- of MS, possibly gait issues, balance problems, spasticity, abnormal reflexes, and so on. Not every sign, of course. Sometimes symptoms and signs are mixed up by the patient, and even in medical terminology, so the confusion goes on.

ess

[supermum_ms]

Hi there,

Generally, similar sx's are seen in MS but the sx's of MS are the direct result of brain and or spinal cord lesions, also MS is a condition specifically effecting the 'central nervous system', where as peripheral neuropathy is specifically to do with the 'peripheral nervous system' and it is connected to various causes. ie diabetes, alcoholism, hypothyroidism, infections, trauma, vit deficientcy etc etc  

If your peripheral nerve test results, disclosed an abnormality in your peripheral nervous system, then causation would not typically be due to MS, because its 'more typical' for pwMS, to have perfectly normal peripheral nerve test results. Keep in mind that MS has many mimics, so whilst your sx's maybe similar, the causation is different.

If you don't know what has caused your peripheral nerve damage, i'd think it would probably be the time to push for causation, because treating the medical condition that's caused the PN, is what usually positively effects the entire person. (if that makes any sense)

cheers............JJ  

PS i'll have to agree to disagree with Joidecour, because over here in OZ "Peripheral Neuropathy" is a medically diagnosed neurological disorder/condition but because there are many medical causations, it can also be classed as a description of sx's of something else too, so here its both, a dx condition and a description of sx.

[Joiedecour]

That is NOT a diagnosis. Neuropathy is a symptom but doesn't explain WHY. I do not have your symptoms in the same places, but was told by neuro neuropathy BUT that it wasn't dx but description of sx. My issues range from tingling -severe to numbnesd- in left foot to leg.