All these symptoms that are so hard to pin point. I feel like I've just accepted the fact that it is what it is which sounds terrible but what else can we do, ya know? I've heard sometimes it can take years.
Did you get your entire spine MRI? Can I ask you where you are based? I lost power in my left leg last week and lost focus in my left eye. Are you going to the mayo clinic privately? My doctor is referring me back to a neurologist who I have v little faith in.
Hi no my vitamin B12 us ok Dr said. In fact funny i just saw this as I'm having a bad night, legs going crazy and I went to the loo to see blood all over my foot, I don't know what I've done mustn't have felt it. It's so annoying it must be my ms but Neurologist said not. Wishing you get your answers šš
Hi hayhue,
Im new to his forum as Im also new ad of ay with a MS diagnoses. Ive had major symptoms for 9 years with them being unbearable since June. My MRI also shows no lesions however after numerous blood test, I recieved the dreaded call today. If you dont mind me asking, what blood test have you had?
Holy crap, sorry about all of the misspellings lol My phone has a mind of its own.
Hello all
I just found this thread and know itās old so I may not get responses but was so happy when I found it to see that Iām not alone and not CRAZY! I too have literally every MS symptoms known and have had clean normal MRIās my dr will not order a spinal tap yet which makes me crazy. Itās been 3.5 years of no answers. And of course all my symptoms just keep getting g worse most noticeably my double blurry vision and vertigo. Itās so bad I walk with a cane because my balance was so bad I was falling and ending up in the er constantly. My anxiety if through the roof because I never know if today will be a good day or a bad one and even on a pretty high dose of pain meds Iām in constant pain. I havenāt been able to hold a full time job in over two years Iām barely getting by and canāt get disability because I donāt have a diagnosis yet. They did say it could also be peripheral neuropathy but I recently had a nerve conduction study which came back normal. Then I think the drās actually donāt believe me! One thing I learned was that my attitude affects everything so I have really worked hard on trying to be happy no matter how I feel and try and always have a smile on my face and be as positive as I can which has helped my team of mind in this horribly difficult and painful time but in doing so I think my drās donāt believe how bad the pain and problems are because Iām saying them with a smile itās like they need me to be screaming or crying to take me seriously. Aaaaaagh
I know you all know my pain. I do hope you all feel better, get answers and have better days but thank you all so much for sharing and helping this girl feel less alone you have no idea what it means to me!
Take care and be well!
Wow it is so good to know Iām not only one. Getting ready to hit one year anniversary of whatās been the worst year of my life. MRIās show only one lesion so doctor says he doesnāt know. I have so many symptoms of MS heās baffled. Just had a lumbar and getting results in a week and a half so we shall see if that shows anything. Meanwhile Iām numb on my left side, my left arm is always freezing cold so this time of year is the worst. I have memory and coordination problems. And just recently I keep getting pretty bad dizzy spells that last for about 30 secs but then I feel sick after. It has changed my whole life. Iām very depressed now and have severe anxiety. My mood is s**t. Iāve lost friends and my boyfriend of eight years. Life has been pretty miserable. Iām trying to be more positive but itās really really hard. I hope the lumbar shows something. The not knowing is very hard.
Im right there with u!
I'm new to this site. Wanted to share my story. For almost 2 years I experienced tingling in my right arm. One morning in February 2017 I woke up dizzy as the day progressed my vision became double. Went to ER that night they gave me a CT scan sent me home with a vertigo diagnoses. I went 4 more days and my vision got worse. Went to eye doc she said this is a brain thing. So back I went to the ER. They did a MRI found 1 leasion. Came into my room at the ER and said you had a stroke. They admitted me. Neurologist came in the next morning looking at my MRI and stood there and argued with the doctor saying this isn't a stroke this is MS. Then all the test started. I had every test done for a stroke. In the mean time the neurologist ordered a lumbar tap and a MRI of my spine. No lesions on my spine only lesion I had was the one on my brain. I was eventually discharged and sent home with a stroke diagnoses and all the stroke medications you can think of. I followed up 4 weeks later with the neurologist I saw in the hospital. I had to wait a whole month to get my lumbar tap results. Longest 4 weeks of my life. my results were that I had MS bands in my spinal fluid. At the appt she started talking MS meds. I said I don't want to take meds. I don't want to even have this horrible disease. I heard the side effects of these kind of meds were horrible. Fast forward to Late september went back to see my neurologist and agreed to start meds. I begged and begged to be on the med with the least side effects. He told me this med is givin to pregnant MS patients. So he agreed to start me on copaxone 40mg injections 3 days a week. It took a couple months but I feel sooooo much better. When I was diagnosed I felt alone. I couldn't understand why me? I am 41 and have 4 kids 19, 15 year old twins and a 7 year old. 2017 was a horrible year for me. Please please reach out to me with questions if I can help anyone that is or has gone thru what I have gone thru.
Take care,
Jaime
I am somewhat the opposite of you. I have 5 abnormal MRI's, all indication I have MS but I don't have the so called symptoms everyone says is MS. They all tell me I have anxiety and put me on paxil. I am ALWAYS dizzy, vertigo, feel somewhat disoriented and paxil did help for awhile. I finally went off it and everything I always feel is back. I think you may want to get a 2nd opinion. Maybe its early...or maybe you have lyme disease...or maybe you truly don't have MS. Lyme is a great imitator. Worth a shot. It is possible too that you are healthy and your symptoms don't progress because of that.
Hi Hayhue,
I hope that you find some relief and answers soon! I know all too well the added frustration and stress of no diagnosis can cause, and even make thins physically worse. I have a similar story, but it stretched back almost 8 years. I've had very similar symptoms and I was recently diagnosed with Lyme. I truly believe that you and your doctors should look into Lyme, which can look and feel a lot like MS.
I also need help, I have had symptoms for a few years now. Have run through all the tests. Four mri and a spinal tap. The protein in my spinal fluid was 59! I was concerned, but was told because i had no leisons, that i didnt have ms. I fall, have pain, numbing and tingling, low wbc , low vitamin d, the list goes on. No diagnosis... Help.. there are times when I call and they make you feel crazy not sure what to do suggestions??
Maybe insist your neurologist prefers a lumbar tap? That should show MS bands maybe hopefully so you can get some answers.
Take care
keep pushing for answers dontbgive up. You know your body the best!
Thanks Jaime. Im going to another neurologist at strong memorial in Rochester. Im feeling overwhelmed. I dont even know what to ask anymore.
I am sorry to hear about your difficulties. I was diagnosed with ms almost 40 years ago. Long before the invention of the mri. (Based on symptoms, findings on exams and positive visual evoked responses, and lumbar puncture (spinal tap)). It is more than possible to live with me. However, as I am finding out now, it is not possible to receive treatment-especially disease modifying treatment without a positive mri. The neurologists Iāve been seeing tell me that I donāt have ms. No care at all for my increasing disability especially my vision. No interest in finding out what I have or of even suggesting thatās itās all in my head........like Iād have 40 years of incontinence and all of that! So yes, you can have ms without mri findings. Apparently 5-8% do. But the insurance companies wonāt pay for treatment without them. So it almost doesnāt matter. Iām looking for a doctor that is willing to help me. If you find one, Iāll go wherever I have to. Good luck! And keep positive thinking! Itās the most important thing you can do. Stay cool, rest, take vitamin D and B12. Stay healthy. Keep active. Get a dog!!
Hey everyone. Sorry for the long absence. I've basically given up on testing for now and am just living with it as best as I can. Thank you so much for all the kind words and relations. It's always so nice to know we're not alone.
thank you for your input. Its so tiring. All these doctors and no two on the same page. My vision is changing and Iam still off balance amoung other symptoms. They tell me the same stuff also. Having spent almost $6000 last year on copays and deutibles has ben crazy. I am so tired of being in debt.
I really sympathize. If you find a doctor who will treat your symptoms without mri findings, please share. In the meantime, just rest, stay cool, take your vitamins-especially D and the Bās,get some excercise. Let your family and friends share in the housework, childcare, whatever you need. Maybe itās not MS, either. Let them work you up.
Maybe if enough of us speak out there can be something offered to us. I read somewhere that 5-8% of patients with symptoms donāt show plaque. Not that that information has swayed anyone Iāve encountered recently. President Trump is working on a way to get patients who have no hope experimental treatment but I think theyāre thinking of cancer... Good luck.
Thank you wanda. I will keep you updated. Thanks you all for the support.