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Went to neuro today about MS...
My regular doc found leisions on my brain by MRI. She sent me to the neuro because she thought it could be MS. The neuro told me that he feels that I had a stroke, rather than have MS. How would he figure that out? All he asked or did was ask if I have ever gone blind. Anyway, on the 14th, I go for a lumbar puncture, and also an echo on the heart and vascular, a covet(?) ult(?), and some blood tests to make sure it isn't MS. This whole thing has me confused...and scared. I am scared because my g.Mother had a stroke and became as a little child. The neuro did not know there were strokes in my family. How would he guess that??? Anybody...do you understand what happened to me today???
sally |
MS in the prodromol stage (before dx) is notoriously difficult to pin down. People who appear in a neuro's office with a lack of clinical symptoms (Babinski's, L'hermitte's, hyperreflexia, spastic responses in various muscles, visual problems, and so on), but do have suggestive lesions of the brain and/or spinal cord on MRI can be suspected of having one of several problems, including stroke. Doctors also like to to have some sort of clinical history (preferably a pattern of relapsing remitting symptoms) before dxing MS. There is no definitive empirical test for MS. Dx is generally made using MRI, evoked potentials, spinal tap, and clinical history. Even then, the dx can be called into question.
I'd take the blind query with a grain of salt. Vision problems and optic neuritis are common in MS, but actual blindness is comparitively rare, and then usually in the end stages. A fairly uninformed (being kind) and ignorant (being harsh) comment by this neuro, IMO. It's hard to swallow your fear and be patient, I know. But you're going to have to be. And persistent. If lesions have shown up on your MRI, you need to find out what they are. A piece of unsolicited advice? If this neuro patronizes you again, either politely put him in his place or fire his *** and find another. Good luck. Though I'm glad to meet you I sincerely hope you don't have MS. Chris |
Hi Sally, My Daughter also has MS (in total remission right now), but when she went to the hospital with MS symptoms, they thought she had a stroke too, but when she saw the Neuro and He did an MRI, he saw lesions in just the right place for MS.
He DX her on the spot. But then he knew that her Mother had MS, so, I'm sure that made it easy for him.:rolleyes: I hope you do find answers and that it doesn't take forever for a DX. Some neuros take their time, to cover their butts. Lesions on the brain can mean a lot of things, including stroke. See an MS specialist, Neuro. An MRI of the spine would also be a good thing to do. Good luck with the tests and let us know how it goes. Welcome to the MS forum.:) |
:) Hi Sallyb,
I think the others have pegged it pretty close. I would suggest you create a Symptom's Journal of all symptoms that could be neurologically generated from as far back as you remember. This includes acute episodes, visits to the hospital where they couldn't figure out what was wrong, and generalized possible MS symptoms, all in chronological order. You might be surprised that a pattern may emerge and jump right off the page at you. Do the same with your family history including your extended family of grandparents, aunts and uncles and cousins. Again, there may be a pattern there. This will help the neuro scan the list in a bulletted format and be more informed than just guessing at what might be wrong with you and causing your symptoms. I don't know of any neuro that can read minds. ;) |
I am scheduled to have new MRI's Thursday
Hello All,
3 years ago I started the long trip of being diagnosed with idiopathic small fiber neuropathy. It started in my toes, went up my leg to mid-leg. The pain is horrible. I am constantly fatigued which, of course, is exacerbated by the pain meds. Then I started having bladder problems this year so went through a series of tests for that. My urologist was surprised I did not have a dx of MS because my bladder was, in his words, an MS bladder. I cannot void completely. He called my neuro, I went to see her and badda-bing, I'm scheduled for 3 MRI's to catch me from head to toe. Has anyone heard of MS showing up after a dx of neuropathy was made?? My neurologist says it's certainly not common but can happen. Oh, and I'm pretty old as well - 53. Any comments? Thanks, nancy-h |
:) Hi Nancy,
You're NOT old at 53! I turned 52 in Oct. We are just getting into the swing of our second chance at life. What do you want to do for the next 50 years? The same as you've done for the last 53 years? Not me, I want to create a whole new life for myself and my wife. Now is the time to really get serious about life and have as much fun as we can. BTW, your pic in your Avatar makes you look like you're in your late 30's.:D |
Welcome to the MS forum, Nancy. Nice to meet you.:)
It's not unusual, at all, for you to have both Neuropathy and MS. I think they go hand in hand for some people. Please do come back and let us know how your test go. We are here for you. Hugs, |
The ridiculous thing...
The ridisulous thing is that I have had most of the symptoms for years...and I use to fight doctors to check me for some sort of an autoimmune problem...to no avail. It wasn't until this new doc ordered an MRI on my brain that anybody has discovered lesions. I think this neuro has gotten it into his head that I had strokes because of my age. I'm old too (LOL!!!) at
55. I have always had flare-ups which have progressively gotten worse. However, the symptoms of MS are the same symptoms for many disorders and diseases. It would be a blessing to be dx...even with MS. At least this limbo I have been in will be able to be treated. My Mom is freaking out about the possibility of MS. She has watched me go downhill for years. I told her that if I am dx with MS, at least I will receive treatment. Could you please correct me if I am wrong? Isn't it true that with the proper meds, a person with MS could live a relatively okay life? |
Hi:
Put me in the middle at 54. It is possible to have neuropathy and MS. I agree with you sally, any dx would be a blessing. When I was 52 I was sent to a MS neuro at an MS clinic. Changed my life. While I don't have a dx of MS, just possible MS (because they can't find any other reason for my symptoms), the MS neuro treats my symptoms: Baclofen for spasticity, Amantadine for fatigue, now Lyrica (hoping to switch to Neurontin) for neuropathic pain. I use a cane when necessary, not often enough. :p Welcome Nancy. :) I fought with the urologist to get urodynamic studies for the same reason you brought up. My bladder doesn't empty completely and sometimes it's hard to 'jump-start'. I wasn't two minutes into the testing before the nurse asked if I had MS. I have a classic "MS bladder". Undx'dCraig spent a number of years with an MS dx only to have it recinded. I think that is horrible. It must be very difficult to deal with. It's interesting that more of us are experiencing a cluster of symptoms in our late 40's, early 50's and don't have a dx. Good luck with your tests. |
stroke???
I have been wracking my brain about stroke possibilities. I now remember a time when I was in church, and one side of my face, chin, and throat tightened up. I'm not sure I remember it well because I blew it off. I do remember thinking that I could have been having one...but it disappeared quickly. Vaguely, I remember a sound inside of my mind. Who knows??? Also, it was about that same year (20030 that I was having severe problems with swallowing. It was as if there was a flapp in my throat that would not close.
At that time, they ran a barium swallow, and told me that I had a hyetal hernia (spelling?). Meanwhile, while I am remembering all of that, I also know that I have been wondering for a long time if I had MS, or some other autoimmune problem since I have most of the symptoms. Wondering for at least as long as 2003. Infact, that is when I joined that MS Yahoo Group. And...to make matters worse and more questionable is the fact that whatever is wrong with me is DEFINATELY progressive. I am so much worse than I was back then. Infact, I even have difficulty in my left leg walking now, and chronic fatigue and pain has multiplied by at least 2. Life for me is spent pretty much at home except to go get food. Guess I will find out soon enough. As far as insurance goes, all I have is Medicare. Would Medicare call the shots on testing like other insurance companies would? Do they put MS patient quotas on the docs??? |
Hi Sally:
You are on a mission - you need answers. MS is a dx of exclusion. A hiatus hernia (very common) is not a symptom of MS. Is your physician supportive - does he/she take you seriously? Have you had a battery of blood tests to rule out other possibilities such as glucose intolerance or B12 etc? With progressive symptoms for years, I finally found a neuro who, while looking for answers (still don't have a dx other than possible MS) was committed to giving me a quality of life. My quality of life went from about 10% to 90% with the right meds. My clinical signs are blurred/double vision, neurogenic bladder, spasticity, neuropathic pain, fatigue and weakness. The neuro exam shows corpus collosum atrophy, cerebral atrophy, nystagmus, hyperreflexia, diminished sensation, gait problems (I use a cane when necessary). What a difference the right meds make. While it isn't perfect, I have my life back most of the time. If I do have a 'set-back' it usually lasts 24 or more hours. This last one knocked me back for four weeks and recovery has been slow. That's the worst about the progressive part, one just doesn't bounce back like we did in our 20's and 30's when the symptoms were milder and we were too busy with kids and jobs to really notice. Because I am glucose intolerant I eat 5 small meals a day. Can't say it helps subjectively, but objectively it is the appropriate thing to do. Good luck - keep us posted. |
Sally B
SallyB - I understand all of your frustrations. I, too, question the neuro you went to but at least he has ordered all of the testing. Don't you just get tired of all the tests????? I guess we are in about the same stage of being diagnosed. I had my brain and spinal MRI's yesterday.
TO ALL OF THE REST OF YOU - Thank you for sharing your knowledge and you are all sooooo friendly. When I made the comment about my age (53) being old, I meant that in reference to being old for just being diagnosed with MS. I was reading up and read that "typically" MS is diagnosed when a person is in their late 20's and 30's. It is very nice to find a group of "perfectly aged" people. (Jeez, now we sound like beef.) I will let you know how the MRI's turn out. I expect to hear Monday/Tuesday. Thanks again for your kindness. It is appreciated more than you know... nancy-h |
rheum added...
The idiot neuro set me up for several tests. But, my rheum intelligently added the B-12 blood test, and one other that I can't read. She also added full MRI on my spine since it has been years shince I had one. I am so thankful for my new rheum. If anybody will get to the bottom of my problems, it will be her...or my new regular doc. The regular doc is the one who found the lesions on my brain. I had gone to the neuro before I met her, and he just sent me on to other docs. Sounds as if he has his quota on patients. To say I am disgusted is a small thing. I am beginning to get downright mad!!!
Hey, Nancy. My symptoms became pronounced when I was about 37 or 38. Does that count? Here it is 12-13 years later, and I am still on the Merry-Go-Round. As far a bood tests go, the creases in my arms are beginning to look like a heroin addicts!!! Good luck to you. |
I had never
heard of this before, "As far as insurance goes, all I have is Medicare. Would Medicare call the shots on testing like other insurance companies would? Do they put MS patient quotas on the docs???
Is there materials on this somewhere? On both insurance and Medicare that is? |
Had Lumbar Puncture...
Had the lumbar puncture a couple of days ago. Kinda hard to hurt somebody that deals with chronic pain daily anyway. Wasn't so bad. Have a few other tests within the next few days. I will let y'all know when the doc tells me anything...MS or stroke or what?
sally |
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