Burning across chest and down arms

[jblueeyes7]

Hello. I moved from Transverse Myelitis into MS last May, and also picked up Lupus since then. I wonder if anyone else has the burning sensation that goes from sternum and radiates across chest and shoots down the arms? My pain is not being helped at all because the Dr says it is not MS and can not explain why it wakes me every morning, and intermittently throughout the day--every day. Anyone have this, too? I don't know what to do but it zaps my energy.

[jimeka]

Hi jblueeyes7, I also experience a burning sensation. Mine is down my good arm and it makes me feel nauseated. I go see my neurologist February 1st so it is on my list to ask, I will let you know what he says but if you find out before please share, Blessings Jimeka

[jblueeyes7 in reply to jimeka]

Thanks, Jimeka, I will share anything that helps. I'm going to see a new neurologist on Fri. up in Denver who specializes in MS. I am desperate to find relief. Return blessings.

[jimeka in reply to jblueeyes7]

Thank you praying all goes well for you on Friday. Don't forget to write everything down that you want to ask him, even give him a copy so that you don't miss anything out. Someone on here had written it in their phone and just gave the phone to their doctor. Anyway I hope you find out what is causing the burning sensation, blessings Jimeka

[Jesmcd2 CommunityAmbassador in reply to jimeka]

Hi jblueeyes7 welcome to our wonderful site! As you can see we are full of helpful information! But always remember that THE

VERY BEST INFORMATION IS YOUR DR😊

I answered here because jimeka talked about my phone 😅😅 l keep an updated list of my medications and have started a tally of most reoccurring 😊 Then l just hand it to my Drs and they are all on they same page. 😁. It takes some time to do it, but it's so worth it in the end!

Now mymsaa.org has one also

mymsaa.org/msaa-community/m...

You can check that out also, l personally don't care for it, it doesn't have even half my meds listed. So mine are in a file on my phone. But check it out! It might be great for you!☺

I really hope your new Dr will figure out what is going on with you. Is there anyway you could call to see him sooner, explain what's going on?

*Helpful Hint* If you put an @ in front of the name of the person you're talking to they will get a notice. IE @ jesmcd2 ~with no spaces~

Jes🌠

[WAshingtongirl]

Welcome, jblueeyes7. Are you new? If so, I'm sorry you have MS AND Lupus too. Really sorry. But I'm glad you found us.

I am not personally aware of the pain you describe, although I do know that MS affects us all differently, and many of my strange symptoms have just been attributed to MS.

If your neurologist (I hope he is a MS neuro) doesn't think it is due to MS, what about the Lupus? I understand pain is a symptom of Lupus. Whatever the cause, your neuro should refer you to someone else (your rheumatologist or PCP) for further investigation if he truly believes it isn't MS-related.

I hope you get an answer and relief.

[jblueeyes7]

Thanks, tutu. I forgot about a rheumatologist ! I'll give it a whirl.

[jblueeyes7]

You are so kind. Thank you.

[Fancy1959]

Hello and welcome Jblueeyes7 from Fancy1959. You have just become part of our extended family in this amazing chat room. You have found a safe place to come to with concerns, to ask questions, or to just have someone to lean upon in times of need. We have broad shoulders and are used to letting anyone and everyone to vent and cry if necessary on them. I am so sorry that God has dumped so many autoimmune problems on you all at once. Jeez I can't imagine going from transverse myelitis and picking up lupus, and now MS. You have a full plate to be sure.

The person who should be your primary support mechanism for diagnosing this is seriously letting you down. If your doctor can't figure this out or run test for or refer you to see other Specialists for advice and diagnosis then I say it's time to find a new doctor. I and truly lacking any advice that would help you. I do have to deal with MS and I have a rare genetic liver disease but nothing to deal with lupus or what you were originally diagnosed with your transverse myelitis.

The best advice I can offer is that I'm only a post away as are many very compassionate caring and kind individuals in this chat room. We will be here to listen to your concerns about your conditions but I know I cannot be a further assistance with helping you to figure out what's causing the pain across your chest and down your arms. All I can ask you is that you do not let this run off. We never want to let new symptoms that are serious to disrupt our sleep or to disrupt our patterns throughout the day carry on for very long without being diagnosed. For the very real possibility that they might be trying to give us warning of things to come.

Perhaps the only thing I could help with this to give you the National Ms Association phone number. They have Regional Offices and they might be able to direct you toward or recommend other neurologists or specialist in your area to help with your diagnosis. The phone number for the National MS Society is 1 800 fight MS. Good luck in your search and please keep us in the loop as to what's going on with your diagnosis. You are important to us and are now part of our family. The only thing I would like you to remember is that together we are stronger. And we will be here for you if you need us. Just reach out and grab us by the hands and we'll pull you into our Circle and support you in whatever way we can. Take it very easy until you figure out what's going on. God bless. Fancy1959

[jblueeyes7]

Hi Fancy. Your message is so thoughtful and much needed. Thank you. I live in NM but I am going to a clinic in Colorado--it specializes in MS. I feel that I am in much better hands as I have had Lupus symptoms for over 2 years but none of the NM doctors said anything about it. Butterfly rash appeared as I had my 1st app at the clinic in Colorado, and he recognized it and gave me hope that I finally found the right place for me. I hope your liver disease doesn't interfere with your life too much.

Thank our again for your kindness-blessings back

[erash]

jblueeyes7 welcome! So sorry @ your symptoms. Could it be a variant of the MS hug?

[Morllyn]

Sorry about your pain.

When a patient tells a doctor that they are in discomfort or pain he should try to identify the cause or send you to another doctor. Just saying that it is not MS is not acceptable. OK, it is not MS in your opinion, then find out what it is!

Oops, sorry.

[Eleyne92]

Good morning, jblueeyes7

Welcome.

I'm not familiar with the sort of pain you're describing, but MS affects us all differently, and I assume the same can probably be said about Lupus. 😠😢

I have had, for years now, intermittent pains in my fingers and toes, which feel like either a broken bone or severe sprain. They'll wake me in the middle of the night. My physical therapist reminded me that MS affects the nervous system, and those pain signals could be from damaged nerves. There's no way of knowing, if another reason can't be determined. Hopefully, your neuro and or rheumatologist can help you figure out the cause of the pain and get you the relief you need.

[greaterexp]

If I could add a suggestion, I kept a running list of symptoms on my desktop and took a printed copy to my neurologist, especially since symptoms changed so quickly, and I would forget. She asked if she could make it part of the chart, and she said it would save her a lot of time and give her the chance to review it more later. Your doctor's may find it helpful, and it helped me keep things straight, too!

[DebbyLou]

I have a lot of burning right now. Was thinking it must be neurological, but since Tylenol helps maybe not. As painful as it is, I probably should as Dr, about it.

[TonyiaR7]

Hi jblueeyes7

Welcome to this caring, compassionate, knowledgeable group! Sorry you are experiencing this burning pain. I also experience this type of pain. I tend to get this pain when I am dehydrated and/or overuse my muscles. My neurologist and pain management specialist told me that it is nerve pain. They gave me gave me a prescription for neurontin for the pain. For the most of the time it works. So I have to remember to hydrate. Ice also can help relieve some of the pain. They also suggested that I get a nerve block because since I had total knee replacement and I have been experiencing the burning, electrical pain in my knee which is causing me severe muscle spasms along with this pain. It is terrible. I get in the chest and arm area when I have a severe MS hug. I even try eating ice pop or sorbet to get relief. The sensation of eating something cold relieves the pain mentally. I maybe should see a rheumatologist as some one suggested. It is a terrible pain. Please share when you find something that works. I am open to suggestions.

Prayer also works. I will pray for us, that we or no one else gets this type of pain, and if so, they find some relief too. (PS I didn’t find any relief from any type of pain medications).