I understand the difference between the peripheral and central nervous systems. I also understand that MS only affects the Central Nervous system.
That understanding stops when I have an issue with my legs…having trouble with a limp or a numb feeling. Also what about the fasciculations / flutter i have in my muscles or the rhythmic twitching I have deep within the muscles? What about when the tip of my nose it totally numb, or when my eye won’t close and I have to wear an eyepatch to sleep? What about when I have trouble talking, or slurring, or am drooling because something is going wrong with my mouth? What about when my trigeminal nerve is hurting so bad a toothbrush feels like an ice pick? What about the brachial plexus neuritis or when I had a spasm that wouldn’t let go somewhere in my intercostal muscles? That one was so bad I couldn’t walk and had to go to the emergency room.
I don’t have Diabetes, Lupus, Cancer, physical injury, vascular / oxygen supply problems, Sjogren’s syndrome, or rheumatoid arthritis. I am a Healthy sick person. My only issue is MS. I’ll get a pulled muscle when I run sometimes but that is it.
So how can it be said that some of these symptoms I mentioned above aren’t related to MS?
I don’t have all the symptoms you list, and don’t know if this will help, but it is certainly possible to have MS and PN together.
I was diagnosed with both conditions simultaneously. The PN was picked up after nerve conduction tests. The MS was diagnosed on repeat MRI and EVP results after a relapse. Like you, I don’t have diabetes, which I understand is the underlying cause of 95% of PN cases; I was told the cause of the other 5% is ‘unknown’. I was also told that MS does NOT affect the peripheral nervous system, so the two conditions are unconnected.
The good news is that, for me, a hefty dose of Gabapentin very much reduces the frequency and eases the severity of all my shooting pains and the ‘hug’, whatever the cause.
Of course, I’m not a medic, this is just my personal experience.
Have you seen your GP about all these issues you suffer from. Keeping a record in diary and showing it to them would certainly push them to take it seriously. ‘Coz the sooner you get diagnosed with any reason whatsoever to explain all these symptoms, the quicker you can be started on appropriate treatments.
Plus ideally, the GP can refer you to a neurologist and get MRI and other investigations being put in place for you.
Thanks Mottisonj, you made me learn about CNS & PNS. I guess that the CNS is the motorway and trunk road network and the PNS are all the small roads and tracks. I think that some signals sent between the brain and muscles use both networks and that MS damage can have an impact on signals originating or terminating in the Peripheral Nervous System. I might be totally incorrect but this is how I understand it.
As I said in my above post; I was told by my consultant, an MS specialist who diagnosed me with both conditions, that they are not connected. Yet, certainly in my case, both conditions produce similar symptoms which are treated with the same drugs.
MS must affect the Peripheral Nervous System: if the MS ‘Hug’ is a known symptom of MS (which it is), and the intercostal muscles are only affected by the PNS. So just using that one symptom, I made the (wildly amateur) connection between MS and the PNS.
Maybe the difference lies between the Somatic and the Autonomic Nervous Systems, both being part of the Peripheral nervous System, but having big differences between them.
OMG, I cannot believe that having failed science O levels, I’m now looking at human biology and kind of understanding what it’s about, even in a small way.
Sue (aged 51 in body and 14 in understanding science)
Hi I have ppms I am numb pretty much all over feet legs arms face back neuro who diagnosed ms says symtoms off ms
I am also diagnosed with sle reumatoligist sent me to differant neuro who diagnosed peripheral neuropathy and says it a
Symtoms off sle and maby sogrens.
And I think I only got diagnosed with sle cause gp sent me to reumatoligist, nine years later during a time when I was having
Serious double vision and blurring and hellish headaches I got sent to neuro after mri showed lesions on brain stem after s more mri,s and ct scans and looking at medical records from lifetime he diagnosed ms when the numb ness showed up
Thank you aqm805. I have actually been diagnosed for 15 years. Was told I’ve probably had it for almost 20. It just gets frustrating when the PN symptoms usually show up around an MS flair. The rest of the Non Flair times I don’t experience any PN symptoms.
I did get frustrated one office visit when I was having both a flair and pn symptoms. My neuro gave me the PN does not = the CSN talk.
So I blurted out " So what, are you telling me I have two nerve diseases?"
His answer was very frank. He just said “Yes!”.
I still don’t know what this second PN illness is. I guess I will continue my research and see if I ever find an answer.
Ben, they are getting ready to do yet another EMG test on me. I will be interested in the results.
Once I started treatment I ended up with severe bone pain in my arms. It felt like severe growing pains. My doc said it might have been a side effect of the treatment. Who knows?
But he put me on high dose prescription folic acid and within a week the pain was gone. If I slack off filling my prescription and go more than a week without taking it the bone pain comes back. The best description is like growing pains…or the aching your bones get when you have been out in the super cold weather too long.
I’ve been given gabapentin before and a few other anti seizure meds like it, and muscle relaxers, etc.
I take enough medicine everyday to choke a horse…lol…so I avoid new prescriptions like the plague. I never take opioids, or painkillers in general other than advil. I just hate the side effects some of those meds can cause. I’ll stick to my 1 seizure med, two awake meds, 1 depression med, folic acid, D3 (because I am usually deficient), B12 for the same reason, high doses of biotin, alpha lipolic acid, acetyl l carnatine…and other supplements I’ve been told to take, oh and the Betaseron. I can’t forget that one, I have taken approximately 2,670 shots of Betaseron in 15 years. I look like target practice.
Thanks for your take on the PN situation. It is comforting to know someone else is dealing with the same stuff.
That is exactly how I always thought of it. All PN pathways start at the spinal column or at least the diagrams I have looked at seem to present it that way.
If it all comes from the same place…shouldn’t it be part of the same illness.
In the truest sense of MS’s description one major component are Plaques. If we are defining MS as plaques in the CNS, and can state definitively that plaques don’t occur in the PN, I can accept the doc saying it isn’t MS.
I still believe they are related…or maybe one makes the other more likely. Maybe one day we will find out.
One thing my original Neuro said was that disease modifying drugs could possibly cause some other nerve issues. He said even with how well they work, some of the side effects…are still not known.
You can pinpoint rash, or headache, or upset stomach to medicine side effects (as you see listed in almost all medicine side effects list), but because so many things can cause PN issues it is hard to pinpoint whether it is the medicine or something else.
I for one…lol…won’t stop taking my Betaseron to test the hypothesis…I like walking too much. I was told I’d be in a wheelchair at 40 if I didn’t start taking the disease modifying meds, I’m a runner so not a happy thought. I’d rather deal with a needle for the rest of my life, and possible PN issues than not be able to walk. I’m now 42 and often run/walk 1/2 marathons. I’m glad my Neuro gave me the warning.
A few times I have written Bite me MS on the back of my shirt. It gives me extra motivation if I remember that I am trying to prove to myself that I am not giving up.
Thanks everyone for your thoughts on the PN vs CNS issues.
