What is this? Unsure where to go?
I’m a 28 year old female. The last few months, I’ve been having trouble walking. This trouble walking stems from my left leg, I think. My knee barely bends, leg swings out to the side in a circular motion, and there’s a foot drop. I trip a lot because of it, and can’t walk the distances I used to be able to. I can barely even walk down the street or in a large store. I saw an orthopedic specialist who was concerned about MS. He referred me to a neurologist. The neurologist does not think I have MS. In fact, she has never seen a walk like mine before. She seemed utterly confused. I'm doing a brain MRI, and if that doesn't show anything, a nerve conduction study.
I was actually a little displeased with the neurologist I saw, however, as she had some inconsistencies with other doctors. For example, she said I had no weakness in my left leg, while the orthopedic doctor definitely detected weakness. I did notice that the orthopedic doctor put more pressure on my legs, while the neurologist put next to none. She also, unlike the orthopedic doctor, did not have me walk in the hall. She seemed less attentive in terms of my walk, other than saying, "I've never seen anything like that" just from seeing a very vague walk in a small room. She seemed far more concerned about recent headaches, which have since gone away. So I'm not really sure what to think.
I've posted on a few communities that are more general, and have gotten no replies. So I thought I'd' post here.
Other weird, maybe related things:
My fist clenches when I type on my right hand, and I can only type with two fingers. That has gone on for a couple years. The walk, which does also seem to involve muscles tensing as well, affects my left leg and has only gone on a few months.
I'm not only baffled, but I'm frustrated. I don't know what's wrong. Thoughts?
In MS the MRI shows something, since lesions in the brain (in areas specific to MS since lots of other things can cause lesions) or spine are required for a diagnosis of MS if your country uses the McDonald criteria for diagnosis of MS. These areas are not always specific to MS though. By seeing specialists, especially a neurologist and getting an MRI you are well on the path to finding out what is going on, since only a qualified neurologist can diagnose MS. There are a large number of MS mimics, that can look and act like MS even on MRI. Hopefully you'll know more when you get the MRI, the neuro may be waiting for that.
If the MRI shows something and you're still not confident with your current neuro, you can always ask your PCP/GP to refer you to another neurologist for a second opinion. My step mother was suspected to have MS but had nothing on MRI, it turned out to be a solid diagnosis of CIDP instead. With me, I got an MS diagnosis on first MRI (often doesnt happen that way) because I had both new and enhancing lesions as well as old ones (met the McDonald criteria for dissemination in time and space), and ones in places of the brain that are reasonably specific to MS. I also had C-spine lesions (I didn't present with classic MS symptoms at the outset so had to go for private pay MRI to get to a neurologist, then neuro ruled out mimics with added tests like Evoked Potentials, fortunately I didn’t have to do lumbar puncture). Unfortunately you may be waiting a little bit for the MRI to know more, and, if it shows possible MS, there will likely be further tests to rule in/out MS mimics (there are lots of mimics).
You're several steps ahead of folks who can't get a referral to neuro and have no MRI booked yet, so that at least is good. Please hang in there and continue to self-advocate until you get a diagnosis.
Best of luck and I'll send some positive vibes your way. 🍀🤞
Hi! I would definitely ask for a second opinion from neurologist who specializes in MS, if such is available in your area. If not, there is often telemedicine. This link to the NMSS will help you find a second neurologist who specialize3s in MS, and should also tell you if telemedicine is an option. TiltinMyBrain has an excellent reply coming up soon -- you may have already seen it. He or shee speaks of a lumbar puncture as to be avoided at all costs, and I wanted to share my opinion and experience. I was TERRIFIED of the puncture, and then when I had it, it truly wasn't all that bad. It was a microinstant of pain, and then the pain was gone almost before my brain had identified it as pain. I didn[t experience any of the side effects we have been warned about, but I was very careful to follow the doctor's instructions in recovery from the procedure, which is basically, stay put and don't move! But the information received from the puncture formed a big part of my subsequent diagnosis, although I will note that my diagnosis came a good fifteen years before MRIs were invented. If the puncture is called for, ask the nurse to hold your hand, you will be fine. Startled, appalled, but fine. You have got this. The diagnostic process is long and convoluted because all the similar diseases need to be ruled out, but hang in there. you aren't crzy, and you're not alone. Drop back n and we'll all tell you stories whose lightest words would harrow thy soul, freeze thy young blood and make thy knotted and combined locks stand on end like quills upon the fretful porpentine! (Hamlet) We are all in this together, and we got you! Take care, keep breathing, and keep asking questions! Forgot to put in the link: https://www.nationalmssociety.org/Resources-Support/Find-Doctors-Resources
