Announcement

Collapse
No announcement yet.

Sort of new here

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • KoKo
    replied
    Originally posted by Crazyguy View Post
    Just an update. The MRI of my back was normal. My neurologist has referred me to an ENT for my dizziness and he sent me to do a VNG and hearing test. Hearing is normal and Iím waiting on the results for the VNG. My neurologist found I have peripheral neuropathy of my motor nerves in my arms and legs. He definitely thinks I have an autoimmune disease and referred me to a rheumatologist. He also suggested I might have lupus. I guess only time will tell but I feel weíre at least on the right track. Will post more when I know more.
    Hi Crazyguy ~

    Thank you for the update.

    Looks like you and the doctors are keeping busy with tests!

    Good to know that you're on track to finding out what is causing your symptoms.

    Wishing you some measure (a good amount) of peace and patience while you go through this process.

    Take Care

    Leave a comment:


  • Mamabug
    replied
    I'm sorry that it is taking so long to get back a dx. Limbo is an uncomfortable place to be.

    Doctors use the McDonald's criteria to diagnose MS. However, MS is an illness that is often diagnosed by exclusion. In other words, before diagnosing MS, doctors often need to rule out other illnesses.

    I was referral to a rheumatologist by Mayo clinic after a "possible Central Nervous System Lupus" dx. I saw him for over a year before my neurologist changed my dx to MS.

    Hopefully, a rheumatologist will be able to either diagnose you with something, or rule out some additional illnesses so that you'll be closer to an accurate dx. Or, like me, your MRI's may change in appearance, over time, and begin to look more like MS.

    (Check out my MS journey in small green font below my signature.)

    Leave a comment:


  • Crazyguy
    replied
    Just an update. The MRI of my back was normal. My neurologist has referred me to an ENT for my dizziness and he sent me to do a VNG and hearing test. Hearing is normal and Iím waiting on the results for the VNG. My neurologist found I have peripheral neuropathy of my motor nerves in my arms and legs. He definitely thinks I have an autoimmune disease and referred me to a rheumatologist. He also suggested I might have lupus. I guess only time will tell but I feel weíre at least on the right track. Will post more when I know more.

    Leave a comment:


  • Crazyguy
    replied
    Hi Rdmc, thank you for your reply.

    Some doctors have have told me it was stress related but that was a long time ago. I did suspect they thought I had conversion disorder. But this was also while I was in the middle of a psychotic episode. My psychiatrist who Iíve been seeing for some time told me I definitely donít have that. So I guess that could be a bit of paranoia.

    My previous neurologist thinks I have bppv. And like you, only did 1 15 minute exam and MRIs only on a 1.5 Tesla. My second neurologist was horrible and only did a few tests and said since my MRI was normal that I donít have MS. My current neuro I have some confidence in. He says itís at least possible to have a normal MRI although it is unlikely. He is leaving no stone unturned. I have an appointment next week with an ENT, and a 2 hour EEG. He did an MRI of my middle and lower back on a 3T machine. I currently waiting on the results for that.

    I have been doing PT for my balance and dizziness which is helping. And he thinks the problem is vestibular but not BPPV.

    So far no one has pulled the mental health card on me and they recognize my symptoms as organic but donít think they are from a single source like MS. My psychologist has been encouraging me to get more answers and even referred me to my current neuro. So I donít she she would do that if this was ďall in my headĒ.

    I should be getting some results from my doctor soon so I will keep everyone posted.

    Leave a comment:


  • rdmc
    replied
    To borrow the title of a Beetles song, the path to my diagnosis was a "Long and Winding Road."

    I'd had symptoms for years, going back to my college days, but whatever was wrong always went away after a few weeks, so I'd dismiss the symptom and move on. When I was in my mid 40s the symptoms "aligned" all at the same time and there was no ignoring it anymore.

    Still took another 5 years till diagnosis. This was mostly my fault because I wasn't tenacious
    enough when a neuro, after a cursory 5 minute neuro exam, would assure me it wasn't anything
    of a neuro mediated problem, I'd say "Okay" until the symptoms would hit hard again, and then I'd try the same neuro or another one.

    Many of us, middle aged or older women know the drill (I guess it happens to middle aged men also ) The culprit was stress, hormonal i.e. menopause,etc.) One doctor gave me a bottle of low dose valium and told me to "relax and stop obsessing about my symptoms"...and
    the valium did help my symptoms like spasm in my face, in my tongue, slurred speech, dexterity in one hand, etc. reinforcing the doctor's diagnosis, and I hoped too we'd found an answer.

    Finally, after about the 5th year into this process someone told me about a new neuro in town who had come from University of Alabama at Birmingham. U of AL, at the time, had a leading MS neuroresearcher, Dr. John Whittaker, who had mentored her. She did my neuro exam (her neuro exam lasted for 3/4 hour...went over my films with me and said I had a textbook case of MS for someone my age (I guess all the other neuros hadn't read the same textbook.)

    MRIs in recent years have really taken to the forefront of diagnosis, and this is a shame in my book. If folks were having MRIs on 3.0 Teslas, or I hear now there's a 7.0 T, it might be another story. I'm still getting my MRIs on a 1.5 T and it's at a trauma hospital in a "big city." Turns out if the other neuros had looked in the area of the brain from which all my symptoms seemed to stem , they might have seen the faint shadow which was a 9 mm lesion in my medulla affecting my autonomic nervous system, and many symptoms originating in my cranial nerves. But it was hard to visualize unless you knew what you were looking for (not hard to see now because they know where to look.)

    If I've seen the staff neurologist when I've been admitted to the hospital for pneumonia or similar problems, they might take a quick look at my MRI and announce to me that I don't have MS. I always, nonchalantly, thank them for that news, and then they check my reflexes and announce I have no reflexes...and I then enlighten them about my Baclofen pump (this one
    sort of ticks me off because it's always at the top of my medication list which they would have seen if they'd done a quick look over of my chart before walking in my room.) Last pneumonia hospitalization my 31 year old son was "babysitting" me one afternoon when the hospital neurologist came by...it was the first time I had seen this near. After my 20 minute "verbal grilling" from the neurologist and the doc had left the room, my son asked if that was a normal conversation with a doctor who wasn't one of my regulars. Unfortunately I had to tell him that a lot of the times it is how it goes. He said if anyone in the
    company he worked for ever spoke in that tone to another employee, or one of their customers, they'd be let go on the spot for the attitude. Fortunately I think this "attitude" is beginning to change because I have 3 doctors (pulmonologist, pain management, and physiatrist), all about my son's age, and they are so kind, compassionate, and
    respectful, I think the tide may be turning on the arrogant attitude front.

    One of the best MS blogs has an interesting article and his diagnosis sort of fits mine, and ends with the same conclusion...large lesion in the brainstem. His article tells all the travels he made to try to find a diagnosis. He's a wonderful writer, he has PPMS, so he has progressed very rapidly.
    I'll put the link to his article in my profile.

    My advice would be if you think your symptoms are progressing, see a neuro, if it's not MS and he/she can give you an adequate explanation/diagnosis, or some relief for your symptoms, that's great. If everything is status quo, there's not much you can do except take a wait and see mode, and if things flare up again, go for another eval. With the MRI evidence now being the gold standard, not sure what I'd do. If I'm not mistaken, MS is still a clinical diagnosis (this may have changed) and an MRI is not needed for diagnosis, but that also might have changed in the 23 years since I first sought a diagnosis.

    I'll pray that you get a diagnosis one way or another, but something you can rely on and hopefully some relief from the symptoms. Sorry I've rambled on, and one more word of advice, even though you have no diagnosis, this should not keep you from getting symptom relief medication. Ask the neuro if you some.

    Leave a comment:


  • SpottedCat
    replied
    Similarities but not for MS

    Hey Crazyguy,

    I have MS - but your restless leg and digestive problems reminds me of my food intolerances and B-12 deficiency. My deficiency is caused by a genetic inability to properly break down the typical digested form of B-12, so my bloodwork shows good levels but Iím not actually able to process it all naturally.

    For these - I am on a restricted diet, drink lots of teas, and take methylated forms of B-12 vitamins to keep my body from twitching. I knew a couple people who also had B-12 deficiencies- one exhibited bipolar behaviors because of the exhaustion he was constantly experiencing.

    Everyone is unique and this may not help, but I hope you get your answers soon.

    Good luck!

    Leave a comment:


  • SNOOPY
    replied
    Hi Crazyguy,

    Sounds like your new Neurologist is being thorough Hoping you will soon have answers for your symptoms. Be aware there is no blood test (even the ANA) that indicates or helps with a diagnosis of MS, all blood work is used to rule in/out other conditions.

    Take care!

    Leave a comment:


  • Crazyguy
    replied
    So Iíve gotten some of the bloodwork results my new neurologist ordered. My vitamin D is low, glucose is a little high, a ďcomplementĒ CH50 is high, and my ANA screen were all suggestive of autoimmune disease. Iíve been tested for lupus and celiac disease and those came back normal. My new PT says my balance problems are vestibular. This is way more than my previous neurologists have been able to find. Iím feeling good that this doctor will figure out whatís on.

    Leave a comment:


  • Crazyguy
    replied
    So I had my first appointment with my new neurologist. Heís not sure what to think but heís ordering more blood work, another emg, Mri of lower spine, and PT specialist in balance and dizziness.

    I havenít got my sleep study results yet but Iím expecting them in a couple of weeks. Will post more when I know more.

    Leave a comment:


  • Mamabug
    replied
    Originally posted by Crazyguy View Post
    Just an update. I talked with my psychologist and she thinks my doctors arenít being thorough enough with tests. Sheís recommended me to a neuro whose known for being thorough. It kinda sucks cause heís out of network, but it seems like heís my only chance at finding out for sure whatís going on with me. Will keep you updated on my status.
    A good doctor is worth their weight in gold. I switched from a neurologist to an MS specialist quite a few years ago. Best choice I ever made.

    Leave a comment:


  • Crazyguy
    replied
    Just an update. I talked with my psychologist and she thinks my doctors arenít being thorough enough with tests. Sheís recommended me to a neuro whose known for being thorough. It kinda sucks cause heís out of network, but it seems like heís my only chance at finding out for sure whatís going on with me. Will keep you updated on my status.

    Leave a comment:


  • Crazyguy
    replied
    Originally posted by JerryD View Post
    Hi Crazyguy . Your posts remind me of my own . Don't give up searching . I see that you are located in the USA . You should be able to find a bona fide MS specialist, there. Keep on looking ! Good luck !
    Thanks JerryD. Iím at least not giving up till I get more tests and my doctors prove to me itís not MS.

    Leave a comment:


  • JerryD
    replied
    Hi Crazyguy . Your posts remind me of my own . Don't give up searching . I see that you are located in the USA . You should be able to find a bona fide MS specialist, there. Keep on looking ! Good luck !

    Leave a comment:


  • SNOOPY
    replied
    Originally posted by Crazyguy View Post
    I will keep you guys posted on my appointments coming up.
    Yes, please keep us posted. We do care

    Leave a comment:


  • Crazyguy
    replied
    Originally posted by SNOOPY View Post
    Anxiety can cause a whole host of physical symptoms. Please speak to your Dr. about treating your anxiety. Researching MS can be helpful for some and harmful for others, it appears to be harmful for you. Maybe it's time to take a step back and stop obsessing over having MS...for your mental health. It's very possible you don't have MS.

    Take care

    Thank you you for your concern. I was very anxious for quite a while, I know that was not good for me. Right now Iím in a better place and I take meds for it.

    I know itís unlikely that I do have MS and I suppose only time will tell. I will keep you guys posted on my appointments coming up. Everyone has been respectful to me and I appreciate that.

    Leave a comment:

Working...
X