I was dx with MS for two years by a general neuro until I went to an MS Specialist who took away the dx because I had "pristine" spinal fluid. This ignores my past history, symptoms, and lesions in the brain and spine (only 3, thank God.) I have many of the symptoms normal MS patients complain of but I have one unusual symptom that doesn't seem to fit in. I burn... I burn like heck; my entire back, my chest, especially my breasts. This is the burn from hell. I can't really explain it but my general neuro has me on Gabapentin (600 mgs 5x's per day) and this barely takes the edge off the burn. Also the muscles in my back and chest seem to turn into rock they are so tense. The Gabapenton seems to do little for this either. Has anyone else here experienced this God-awful burning sensation? Any suggestions? I'm really getting to my wits end with this pain.
yeh that burn sensation is very painful they talk like it is nerve pain- well yeh i have that not at the mom,ent but when i have it -it can put u n tears!!
get a specialist like yesterday- really let us know! tick
I think your also experiencing spasticity (when you say your back and chest seem to turn into a rock). Gabapenton will not help this. You will need to be put on a muscle relaxer, like Baclofen, Zanaflex, etc..I will experience burning also with extreme spasticity. It feels similar to when you flex your muscles (but your not) and the muscles refuse to relax, or can feel similar to when you over work the muscle, and literally feel the burn. The muscle is stiff and on fire. I'm unDX, but I'm currently on Baclofen, which is primarily prescribed for MS spasticity.
I don't agree with the MS specialist, taking away your DX based on your LP results. It is horrible that this happen to you. Nowhere in the McDonald Criteria do you have to have a positive LP, BUT it seems that too many people are having the same thing done to them, as what was done to you. Maybe all these moron neuros went to the same school.
MS is a clinically diagnosed...and It sounds like you have plenty of evidence to diagnose, without the LP. There are several forum members, that had a negative LP, and was still diagnosed as MS..I would maybe put a bug in your general neuros ear about that. I would tell him that you have several friends (we are all friends here) that have negative LP's, and were still diagnosed with MS, and see what he/she says.
I would make an appointment to discuss these symptoms, and maybe you could slip in the statement about the LPs if you feel comfortable.
If your neuro is withholding an MS diagnosis because of a normal LP result, he is just plain wrong. This is NOT a requirement for MS, and many doctors skip this test entirely, since it's invasive and can have painful after-effects.
MS is a clinical diagnosis. There are no tests for it. There are rule-out tests for the many mimics of MS, of course. There are evoked potential tests that give out info about what the central nervous system is doing or not doing. There are tests to see if the pheripheral nervous system is a cause or contributor to the problem. The most important test is the MRI, but even that fails to tell the story a significant number of times. In any case, the neuro shoud be able to read MRIs himself, regardless of the radiology report. Beware of those who don't.
A competent neurologist will first listen carefully to what you report about your health in general and your specific symptoms. That's why we urge our members to be prepared with this imformation if the form of a brief timeline. After that the neuro should perform a very thorough physical exam, at least 30 minutes' worth. It is only at that point, taking into consideration all the information that has previously been gathered, that a good neuro will be ready to offer a diagnosis. That can mean waiting a few more months, looking for changes, which is maddening but often necessary.
This no doubt is more than you wanted to know :-) but I get so angry when patients are left dangling due to some technicality that isn't even important. I urge you, if your neuro is not being proactively knowledgeable in your case, to find another.
PS Burning pain is not at all unusual in MS. It's been my most persistent pain for many years.
While everyone has pretty much nailed itright on the head...I see no need for me to repeat what they have said.
I do however want to say how sorry I am that you are going through this pain and not only the physical pain but the emotional turmoil of being givin a dx, learning to deal w/ it and then swiping it from under your feet! I am sorry for this.
You are in my thoughts and prayers. Are you looking in to yet another Neuro?
If not...I certainly would if I were you my friend.
Keep us updated,
To be blunt, the neurologist who's called himself an MS specialist is dilusional and needs his head pulled out of his rear end!! He should hang his head in shame, how dare he call himself an MS specialist when he cant even recognise one of the most common sx of MS, then to top it off he's thrown out the dx due to the LP, something that is not now or ever has been a diagnostic tool to rule out MS, he's a twit of the highest order!!
If you look at the top right yellow icon you'll see the health pages, look for revised mcdonald criteria, that should explain why your dx is in question or if the so called MS specialist is a dufuss. From my none medical perspective i would think you already did meet the criteria.
Clinical sx consistent with MS
Brain lesion(s) (where are they its important??)
Spinal lesion (s)
No other dx to explain your sx
Having brain lesions and spine lesions means you do have the desimination (sp) of time and space, two seperate areas of the CNS are affected, if you only had 3 brain then i could see why he's thinking it might not be enough for CDMS. I might have remembered this not quite right but isnt it with 1 spine lesion, you only need 1 brain lesion consistent with MS to meet the diagnostic criteria for MS. The LP is additional weight if there are 2+ 0 bands but it doesnt exclude MS if you dont have 0bands, its upto 40 % of MSers dont have 0bands.
I'd check out the health pages and look up parasthesia and the mcdonald criteria, oh and i'd go back to the neuro who diagnosed you and ask that one to help with the burning pain and spasticity (another health page) or muscle spasms in you ribcage.
I wanted to apologize for not getting back here sooner to thank you all for your replies. I have not been well the last few days. You know how it goes. This burning pain with rock back is driving me out of my mind. And SlightlyBroken seems quite right. The Gabapenton hardly seems to do anything at all.
I didn't realize that many of you had MS with clear LP's. Now this is really something I have to wrap my head around. I have had many tests over the last few years. Dozens of vials of blood taken, evoked potentials, EMG. Blood always come back fine. EVP, EMG slightly off. MRI's showing at first 2 lesions and then 6 months later, 3 lesions. Several neuro exams and history all indicate MS which is why Miss.General Neuro finally dx'd it and sent me off to the MS Clinic but according to Mr. MS Specialist, negative spinal fluid and the location of the spinal lesion (L1) does not cinch it. The two in my brain don't seem to matter to him much at all but Miss. General Neuro is concerned about one because it is either on or near the "basal ganglia" (sp?) and could be responsible for some gastrointestinal problems I've been experiencing. She is also worried about problems I've been having with mental fog and dizziness. Hell, at least she is worried.
I don't think Miss General Neuro is up for a fight against Mr. Almighty MS Specialist. The man is an instructor in Neurology and works for the MS Clinic at Brigham and Women's Hospital. I don't think any neuro around Boston would be up for a fight against him. So I'm just left struggling to walk and stand, burning in pain with rock back and hoping no more lesions eventually show up. I have another appointment with Miss. General Neuro in June and I'll ask about some of the medications you all have listed here. Hopefully, my insurance will cover it. Last visit, she tried to prescribe me some simple lidocain (sp?) patches and insurance wouldn't cover it because I was no longer dx'd with MS.
Sorry for the book here. Again, I thank you for all your replies.
I'm w/Supermum (JJ). Def. go back to the dxing neuro. It's not the "quantity" of lesions you have, it's the results of the investigation that led this Dr. to dx you with MS.
Was the specialist only a "second opinion?" If so, no fighting necessary. this Dr. can treat you. Your general neuro sounds like a keeper and spot on w/her concerns. Push her to treat you for what she feels this is.
Belated welcome to you - thanks for joining us!
Yes, the Specialist was a second opinion. Miss. General neuro wanted "to be sure." She was quite surprised when he refused to confirm her dx. This woman has been watching me for three years now. The Specialist saw me for 30 minutes. Problem is, Miss. General neuro is now doubting her dx because she does not "specialize" in MS. This set off a whole new round of blood tests and a visit to a rheumatologist. Sounds crazy, but I actually feel bad for Miss. General neuro. She's going 'round and 'round in circles doubting herself while I fear I may faint from all the blood the vampires are taking.
I really don't know what to do about it all except to talk to her again in June when the new blood tests come back. The rheumatologist saw nothing indicating arthritis and I bet all the blood tests will come back clean again.
i have the burning sensation as well and sounds like maybe the pain in your "rock" muscles is muscle spasms/spasticity. i have it in my back, but lower...thankfully that has been gone for a few months now.
the people on this forum are all very helpful and you will get some great information.
hope you get the answers you need...and get your diagnosis back!!
sounds lke you have a great neuro...can this doctor NOT treat you for your MS??
Yes, Miss. General neuro can treat MS but she wants to be absolutely confident I have MS first because: 1) I have a severe phobia of needles and all the CRABS come with needles attached. I think she said Avonex is only one needle per week but 2) I have had two very depressive episodes in my life and she is concerned about DMD side effects.
Miss General neuro doesn't feel confident prescribing me a DMD without a confirm of her dx. I can't say I blame her either... needles every week, possible suicidal depression... (Watch with laughter as I run screaming from the room!)
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