and I don’t like my Doctor. He kept cutting me off and kept saying everything is due to Migraines or COVID or premenopausal. Kinda being condescending. Like half the symptoms I said he would say oh we all have that! even me! For example: muscle twitching, stabbing pains everywhere,, shaking, Major fatigue, Lhermitte's sign, etc. He did spend over 2 hours with me. He was surprised by the weakness in my legs and by me walking slow holding onto things. Oh and also he gave me a prescription for Topamax which is used for migraines & seizures. Um I haven’t even been tested for seizures yet. Don’t feel comfortable about that.
Anyways, I need to get a brain MRI, Cervical Spine MRI, Lumbar Spine MRI, Angio Neck Carotid MRI, Angio Head MRI all with contrast & without contrast. I also need to have a EEG, EMG & NCS tests. Plus I need to get bloodwork done for Lupus, Rheumatoid arthritis, Creatine kinase, Sed rate, & C-reactive protein. So lots of testing that won’t start until March.
I wish it didn’t take so long! I hate all these symptoms I am having!
Numbness & tingling ALL over
Shaking
MS Hug & throat
Major Heat intolerance
Bad brain Fog
Shooting pains everywhere
Vertigo
Muscles twitching
Muscle cramps
Fingers twitch
Fatigue
Weakness
Legs feel like jelly
RLS
itchy all over
Incontinence issues
Bowel issues
Eye blurry & pain
Headaches
Lhermitte's sign
Etc……
I really hope something shows up on the tests so I can get answers.
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Mishella69
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The first neurologist I saw was... something else. Much the same as you've described, he was very condescending. I only saw him twice and quickly asked to see a different one. I stayed with him until he retired. I now see a female MS specialist and she's fantastic!
I have tried to see female doctors as much as possible. They just seem to listen better. I was tired of the medical gaslighting - male doctors always deciding that I don't know what my body is doing even though I live in it everyday.
Hopefully you'll eventually find the right doctor or specialist for you as well.
The tests are where you need to start, but don't feel compelled to stick with the same doctor. Get the tests, see how he reacts, then find someone else. I went through several neuros before I found one to take me seriously.
Mishella, I'm sorry your neurologist was so dismissive...and/or insensitive. It's trying enough to experience that daunting list of symptoms you've listed. Maybe he was trying to ease your (very understandable) concerns by saying this is what happens to all of us with the passage of time, but if he's been having "muscle twitching, stabbing pains everywhere,, shaking, Major fatigue, Lhermitte's sign, etc.," he should probably high-tail it to a doc himself!
I've had MS since around 1990, and I'm 71 now. I've taken two of the MS meds, Avonex and then Copaxone, over the years, and they've almost completely stopped the progression of my symptoms. Looking back over the decades (!), I can relate not only to the blood and other tests you're facing (seemed like they were never going to end!), but to so many of your symptoms. At this point, the only truly aggravating one that remains is the abnormal sensations, or dysesthesias, in my lower legs. That's under control with gabapentin, which, like the Topamax you mentioned, has also been used for seizures (which I've never had, either).
Right now, before more is known, the one bit of advice I'd offer is to rest whenever the opportunity presents itself. Rest - and a good night's sleep, too - is useful "medicine". Try not to over-exert yourself as much as possible, and most of all, have compassion for yourself and what your body's experiencing. Looking back, this is the advice I'd have given myself before I got a "definite" diagnosis of relapsing/remitting MS. Keep in touch with us; don't hesitate to ask us any questions that might come up. A big - and gentle! - hug to you!
Good morning , I get 12 of the symptoms you mention, I have had RLS since I was 25, I am now nearly 67. Go ahead and have all the tests but make sure you get copies of ALL of your results, that way if you decide to go see another MS neurologist you have definite proof of all of your tests which will save a lot of time for your new guy. There are many diseases or afflictions that mimic ms, so it’s worth going through all of the tests to get a true diagnosis. Keep in touch and let us know how you get on, blessings Jimeka 🤗
While you might have not liked the neuro he has certainly organised a very comprehensive battery of tests (far more than is usual for suspected MS), and spending two hours with you is quite unusual (even for an initial assessment appointment) so maybe your anxieties have made you a bit oversensitive as you are desperate for answers. It's also important for you to understand that your extensive list of symptoms may have more than one cause - even though MS symptoms are wide and varied, it can often be that not every symptom someone is experiencing is caused by MS and there may be other conditions causing problems as well. At this stage all you can do is go through with getting the tests and see what comes from them. For some people, getting an MS diagnosis can be a long drawn out process as it is often not an easy diagnosis to make, and because the drugs used for MS are powerful and can have some significant side effects it is not a diagnosis that is made lightly. At least now you are on the pathway to getting some answers, so stick with it. Good luck.
Do the blood tests being done include Vit B12 and folate? Testing for low levels of these (especially Vit B12) is supposed to be part of the standard workup tests for MS.
Vit B12 and folate next time? No, not next time - they need to be done this time - but you can't exactly "tell" the neuro that. You might have to see if you can get your PCP to order them - I'm actually surprised that your PCP didn't get them tested before referring you to a neurologist. B12 deficiency is one of the MS mimics which has to be ruled out before an MS diagnosis can be made.
B12 and folate sort of go hand in hand and deficiencies can cause a lot of symptoms such as those you have listed. Generally the two are both tested at the same time because a folate deficiency must never be treated without knowing the person's B12 levels as treating a folate deficiency if there is an undiagnosed B12 deficiency can mask some of the problems caused by low B12 and permanent and irreversible neurological damage can be the outcome.
Here's some info on conditions which can mimic MS and must be ruled out before MS can be diagnosed - that's because MS is what's called a "diagnosis of elimination" - the doctors have to eliminate all other possible causes and if what's left is MS then it's probably MS. Some of the info on these webpages will help you understand why he has ordered some of the tests he has.
However, please don't go Googling all of them and then panicking because some of them will match some of your symptoms - leave it up to the neuro - he's ordered appropriate tests and while patience is a really hard thing to find when in this situation, you just have to do what everyone has had to do at some time and that is just wait for results and answers.
Sounds like your Dr is doing all the right tests. My GP sent me for an MRI due to numbness on my face & tongue. He wasn't even thinking MS but the symptoms presented seemed to be cranial nerve damage/blockage. So the MRI came back with 9 active lesions consistent with MS. Then off I went down the road to further testing. The Dr immediately put me in the hospital for a 24 hr steroid IV to stop the active lesions. That was before they had all the meds for MS that they have now. Hope you get answers soon.🙏🙏🙏
All the chat room members above have made valid points. Your neurologist did order Is a barrage of test but I wonder if all are necessary. I don't get migrainese but I have never had most of the tests that your neurologist ordered for you. Yearly MRIS are essential but too much contrast year after year can be bad for you as it builds up in your brain is slow to leave. After I left my initial neurologist I've been blessed to deal with two of the finest neurologist out there. I currently have a neurologist that I never plan to leave as he is an Albright scholar. He is an MS neurologist that has Albright credentials in 2 different MS fields. He is extremely busy yet he has given me his personal cell phone and has called me twice on Saturdays from home checking on me. His brilliance oozes out of him but he is courteous and kind and one of the nicest doctors I've ever been to. Get the results so you can take them with you if you decide to switch. My first neurologist was condescensing and rude and it took me a bit but I finally left . There is no reason you have to put up with that kind of care. There are good neurologists out there that will treat you with respect and listen to you and then go over all the possible diagnosis with you and get you on a good course of treatment.
Please keep in touch and let us know how everything turns out. Until then we'll be thinking of you and sending positive thoughts your way. Take care and remember together we are stronger. Fancy 59.
so sorry, is this a specialist in MS ????? for that is the problem for they know more about it ...good luck finding a good one ...i know what you had to go thru for that also was my problem with the first one ...have a great day and to know you aren't imagining this systems....love and happiness...
Congrats on getting a nice work up! I'm not seeing B12/folate or vision testing from an ophthalmologist on your list. Your opinion of your MD may change during your follow up visit. There are many posts here you can search for ways to deal with specific symptoms.
Any chance you have been exposed to ticks and Lyme disease. That's how mine started with Lyme that triggered MS and a bunch of other Autoimmune crap....
Hi. Was your doctor a neurologist or your pcp? Primary doctor. I would love two hours. My new doctor just says we are spending a lot of time. I’ve never had one do this.
I'm sorry your neuro was a jerk. It he one that specializes in MS? If not, find one. Mine is very smart but has the personality of a potato. I see his NP who is super, and just know that if something comes up, he's there. So far (knock wood) I'm pretty stable.
Get all the tests done, get copies of the written results, get links to actual films on line or get copies of the actual films, i think it's your right, then go shopping for a doctor you do like.
find one that doesn't cut you off, that doesn't condescend to you, sod that. find someone you're comfortable with. bring all the papersork with you. maŷbe bring a friend too if you can.
I think it’s important to wait for the test results especially MRI before you make a decision on what you might have or don’t have. The only test I had was a spinal Mri which confirmed that I had transverse myelitis and a brain MRI Showing a lot of inactive MS lesions. That was all that needed to come up with diagnosis. My first neurologist after diagnosis was OK but I wasn’t enthralled but I stuck with him until nine years later and then I went with an MS specialist and I am much more content with her. If you’re not happy in the long run with your doctor it might be a good idea to switch. Not always easy to do but sometimes with a better result. At least it sounds like he spent time with you which is not a bad thing.
I have the same symptoms. Where are your muscle cramps? How often? Are they painful? I’m trying to figure out why I have been having them for a month now. Started in legs now in arms.
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I cannot Believe i was undiagnosed for almost 11 yrs!
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