Discussions By Condition: Nerve conditions

MS or other? Can't get a diagnosis

Posted In: Nerve conditions 5 Replies
  • Posted By: Mama W
  • September 26, 2008
  • 05:38 PM

I am 26 years old with a family history of MS. I have been experiencing some signs and symptoms for a little over 8 months now. Most of the s/s have stayed the same, while othere like the dizziness get worse and better at times.
My s/s include:
Coordination problems (especially when I have to use fine motor skills and strength, ie: opening a jar or bottle)
I drop things
Loss of balance- I stagger like I am intoxicated, but I don't drink
Mood swings
Numbness in feet
Shooting, stabbing headaches
Achy, sharp and stabbing pains in extremities
Twitches- my legs and arms jump like I am having my reflexes checked when I sit or lay down for periods of time

I have had a bunch of lab work done, all which are normal according to the doctor. I had some audiology tests done, all normal. My brain MRI is normal according to the doctor. They want to send me to a neurologist. I am confused and losing hope. Any ideas??? :confused:
Thanks. :)

Reply Flag this Discussion

5 Replies:

  • I am 26 years old with a family history of MS. I have been experiencing some signs and symptoms for a little over 8 months now. Most of the s/s have stayed the same, while othere like the dizziness get worse and better at times. My s/s include:DizzinessCoordination problems (especially when I have to use fine motor skills and strength, ie: opening a jar or bottle)I drop thingsLoss of balance- I stagger like I am intoxicated, but I don't drinkMood swingsFatigueNumbness in feetShooting, stabbing headachesAchy, sharp and stabbing pains in extremitiesTwitches- my legs and arms jump like I am having my reflexes checked when I sit or lay down for periods of time I have had a bunch of lab work done, all which are normal according to the doctor. I had some audiology tests done, all normal. My brain MRI is normal according to the doctor. They want to send me to a neurologist. I am confused and losing hope. Any ideas??? :confused: Thanks. :)I have been haveing alot of the same symptoms and too have had all the test run as you and then sum. My Dr.s including 2 neurologists can't seem to find an answer. I do have FMS and one neurolgist finally suggested that I may have something else besides FMS. He says "It could be CFS or something along those lines" but he is not sure. All the research I have done on FMS, CFS, and MS suggests that I have MS. Getting the Dr.s to believe it is another thing. I have spoken with several people with MS and they all say it can take years for Dr.s to find it on MRI, Spinal Tap, and blood work. Untill then they can not treat you for it. One lady I spoke to has had it for 20+ years and took her Dr.s 10 years to find the scarring tissue on the brain. It takes at least 3 major episodes with remission in beteen episodes for it to show up on MRI and Spinal Tap. Have faith and don't give up. Best of luck
    Anonymous 42789 Replies
    • October 19, 2008
    • 02:10 PM
    • 0
    Flag this Response
  • Thank you so much for the insight. I am glad to know that I am not alone. All the research I have done suggests MS as well. Right now I am going through what I would consider a "remission" or at least a lessening of symptoms. The dizziness has died down some, but my balance, coordination, gait and strength in my hands is still not very good. I especially find that I am still dropping things, and I have a lot of strength issues when I have to do small motor tasks with strenght combined such as opening containers, jars, even buttons seem difficult sometimes. I am not sure what the next step will be, but I am going to ask to be referred to a neurologist. The other thing is I am not really certain if I can distinctly say when I have had 3 episodes as my symptoms are just now dying down some after several months. I really appreciate the advice!!
    Mama W 8 Replies
    • October 20, 2008
    • 10:54 PM
    • 0
    Flag this Response
  • I came to find this site by googling all my symptoms and it came up ms. A lady at work suggested that I get tested for ms. From what I can tell doctors would rather believe you have a psycological problem than test you for all sorts of things. I notice they care more about getting you in and out in 10 minutes or less than truly figuring out what is wrong with you. I have the same symptoms as you plus some and all i get are pills to treat symptoms and no diagnosis. Do not give up!
    Anonymous 42789 Replies
    • October 23, 2008
    • 05:28 AM
    • 0
    Flag this Response
  • I also have the same symptoms: 24/7 drunkenness that never goes away, blurry,cloudy vision(no night driving lights and street signs trail and very blurry),numbness in toes most of the time,had 1 dr. say it was vertigo but vertigo comes and goes mine is alllllll the time??? seeing new neuro now. nausea, sometimes cold/ hot chills,i feel like i'm on the outside looking in on my life, real weird feeling, extreme fatigue, very moody(my poor kids and hubby) trying to get them and the dr.to realize their is something wrong is very exausting in itself. i started researching my symptoms and i believe it could be ms, lyme, some kind of immune issue, :confused:
    drunkbutsober? 3 Replies Flag this Response
  • Hi Everyone, I just wanted to write a note of encouragement and send hugs to everyone who has written in this thread. I do know what you are going through! I know what it's like to feel crazy for hoping your medical tests show something! LOL...You want answers and aren't getting them, that can be so frustrating. I've been through that, I've hoped for something to turn up positive so that they won't dismiss me and my concerns anymore! Someone was right in saying that as women we are often dismissed. I wish the medical community would spend some time on these boards and see how many bright, intelligent, yet symptomatic individuals are being dismissed and not having their concerns and very real symptoms addressed! It can be difficult for doctors to diagnose MS because if the lesions aren't large enough to show up on MRI they only have symptoms to go by and that's why a lot of women, in particular, are dismissed. They are learning more about it, for instance, 10 years ago I was told that MS didn't cause pain, now though the MS society has a whole booklet called "Ms & Pain"! 10 years ago they didn't think children got MS, now there are pediatric MS clinics! So keep holding on, keep persevering, find docs who will listen to you most of all and not dismiss you! Trust your body and your instincts! I knew something was wrong, but enjoyed a healthy amount of denial, too ;). As for the postings about Lyme's disease, most good neuros will take that possibility into consideration and every spinal tap I've had has included the screening for that, so don't stress about it. There are other things that can cause lesions, too, and also the MRI's are subjective. I had one MRI say "normal MRI of the brain"...and the next one said "3 lesions consistent with MS, no change from previous MRI"!!! So a report is only as good as the person is who is reading the films! A good neurologist will look at your FILMS, not JUST the reports! But that doesn't mean that he or she is automatically good at reading them either! It's a special skill. I've had positive lesions in my brain and spinal cord, yet my newest films of the brain say none again, go figure. All I know, is my symptoms have worsened over the years, it has definitely progressed. It's always possible that there are lesions at a microscopic level affecting the nerves--which are very very very tiny--and just because they aren't showing up doesn't mean there might not be some causing the symptoms, it just means it might be harder to diagnose if they aren't big enough to see. No one, no doctor, no friend, no family member, should be allowed to make you feel crazy if you are experiencing symptoms! Be kind to yourself and don't get caught in the "it must be in my head" thing, that just makes you more stressed and stress will make your symptoms worse, it's a vicious circle! To those of you who may be scared of having MS or worried you might have it, etc....while it is scary finding something out like that, it doesn't have to be a devistating diagnosis! I have had MS for 11 years, and while it's not easy, it actually can be a relief to know what to call it. I happpened to work as a nurse with cancer patients and premature infants in my career so it definitely helped me keep MS in perspective. It's important though to not allow it to change your life just because it has a name. I was taking pre-requisite classes in college and I was diagnosed with MS right before getting into the Registered Nursing program. It was the hardest thing I ever did in my life, but I made it. I did have to take the 2nd year off partly due to my son being ill and then my MS symptoms flaring up from the stress, but I managed to get back and finish the next year with great support from the teaching staff. I had an IV in my arm for part of one semester and had to go to the hospital for IV steroid treatments after class, but I kept showing up. It was exhausting, and I still don't know how I did it looking back, but anything is possible if you don't give up or give in. I'm not as strong as I was then, I graduated in 2001 and it's been a struggle since. I had doctors tell me I was choosing the wrong profession, but I believe I was meant to do it even though it was a short one for me, because I met some amazing patients and coworkers and I don't regret it. One of my first patients was an MS patient who had lost all hope and had never met anyone with MS before, and I believe I was meant to meet her! I had to make adjustments in my career along the way, had to accept that my body doesn't recover as fast as others' might, and now I've been off work completely for 18 months. It's hard, I'd rather be the nurse than the patient any day! I was diagnosed based on MRI of my cervical and thoracic spine and positive spinal tap for oligoclonal bands, extremely elevated myelin basic protein (in the CSF), and I also have varicella zoster in the csf. No one in my family has MS, but there are several other autoimmune conditions in my family. I was diagnosed with Hashimoto's Thyroiditis at age 21, which is autoimmune, and as a child I had early degeneration of the joints with knee surgeries at age 12, 18, & 19. It is apparent I have 3rd type of autoimmune process going on, and/or a collagen/connective tissue disorder but I've been to 3 Stanford specialists and no one has named it yet. They said it is possible it's an autoimmune disorder that has yet to be named or it may be solved with genetic testing at perhaps the Mayo Clinic or Johns Hopkins, etc, where they have bigger Rheumatology clinics. I have had most of the typical MS symptoms and also have many that don't fit MS, so it's important to not assume everything you experience is from one thing. I have redness of my knuckles, they itch and have nodules on them (itch inside), I have suffered from plantar fasciitis off and on and now have hard cords and large nodules that flare up in the plantar fascia, I have hard cords in the palms of my hands, massive leg/feet pain, and I started about 2 years ago having spontaneous tendon ruptures in various joints. I have been to my share of quack neurologists, it's sad to me how many in that particular speciality just don't seem cut out to be good at their job. I, too, have been thrown the "Let's put you on antidepressants" and "You have fibromyalgia" and the "oH just lose a few pounds and you'll feel better" speech. When I went to SF for an MS consultation, he held up my films to the light and looked at the huge lesions and said, "I can tell you your main problem is you need to lose a few pounds and go on antidepressants!". My response, "Oh? I thought my main problem were those holes in my spinal cord?". Knowledge is good. Don't let it drive you nuts though. Be firm with doctors who aren't listening to you and if you can't get through to them find a new one. It took me at least 5 tries before I found one worth my time! Even now, I have exhausted the supply of local ones and have to drive 2.5 hours away to one I like, that can be frustrating especially if I have something acute going on, but he is even willing to talk to me on the phone, he's a gem! One local one actually told me at first, "Well, these lesions could be spinal cord tumors but we can't biopsy the spinal cord until autopsy". Nice neuro! I didn't want to sign up for that test yet! lol. Keep moving forward, keep looking for better doctors. Watch "Mystery Diagnosis" and write down those specialists' names if you have to. There are some good ones out there. There are rate MD sites now, too. I am seeing a very good one who doesn't just put me in the MS box like some have, he realizes that I have a complex history, other autoimmune problems going on, and most important he actually listens when I have a list of things to tell him. He even puts up with my sister grilling him, she is a pharmacist and comes up with good questions! He believes in a multidisciplinary approach and seems very smart about MS and he is the first one to pay attention to my other autoimmune complaints and is trying to tie it all together. If you are interested, he is in Davis, California, and his clinic is called "Institute of Restorative Health" and you can find their page on the web. I know health problems can be so grueling, depressing, frustrating, as you are trying to get answers. I know some of you want it named so badly, I understand. It can be so hard trying to deal with others' perceptions of your health, too, like "Oh you look great though!"...that's a fun one because it makes you feel like they think it's all in your head. Been there! I can look decent when I feel like crap, that's the problem with having something that is attacking you from the inside out! It's not like carrying a broken leg. Fatigue, pain, weakness, depression, those are all invisible, but it doesn't make them less real. If you have pain I recommend asking for a referral to a pain clinic or pain management facility/specialist. I have a great one, but it can take time to find a good one in that field, too, and some times it just takes time for them to get to know you , seeing you regularly and really getting to know how your pain is affecting your life. I've been seeing the same one every month for about 5 years, he knows me very well, and he knows that when I say the pain is bad , it's bad, and he was encouraging me to accept needing to quit work way before I was ready to take the plunge. It can be hard feeling like you are losing your independence. So keep looking for people who know what you are going through so you can feel supported! But most of all don't give up on living and don't let a doctor make you feel crazy! If they don't listen, find one who will! You are their employer!!!!! Have a great day :-) Thanks for reading this, I know it's wordy, but I do hope it may have helped someone out there! Sara ;)
    SaharaRN 10 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.