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Overwhelmed while going through diagnosing

Grateful to have found this site, as hands on experiences is still the best in my opinion. And while I know there are many others worse off, the new losses are starting to get to me.
Over the last few month have strange things, like daily headaches, vertigo and dizzyness, balance issues, numbness and pins and needles on the left side of my body, mostly hand, middle left toe and in my face. Also crazy spasms, lots in my rib area, full back that bends me backwards, my right arm and neck/throat area. Now numbness in my lower lip. But the last few weeks I have weakness in my legs and the left leg gave out while working. Fatigue and intolerance to heat is for years. I blamed a lot of things on being a diabetic and never mentioned "minor" things to my GP. I also dealt with endometrial cancer and so was preoccupied with that. But with almost falling when my leg gave out, combined with the unexplained blurry vision, I ended up again in the emergency.
My opthalmologist said no nerve damage from the diabetes, but optic neuritis 8 years ago, that came back twice in the right eye.
The first emergency room visit was in January when these headaches, dizzyness and paresthesias started. They put me on an antibiotic "just in case" it was an inner ear infection, which did nothing. Than blood pressure medication, as that was high and my GP said it can just come from that. The high blood pressure is now under control, but none of the symptoms left. The recent two emergency visits resulting in a suspected diagnosis of MS, which shocked me a bit. They had blood work back ruling out B12 deficiency, normal thyroid levels and normal electrolyte levels. Also my GP had ordered a CT as he was now getting suspicious of a brain tumor, given the cancer history. Thankfully this came back as no stroke and no brain tumor.
Once they done a full medical history and a neurological exam and the tests that ruled other possible options, they came back with MS and I was put on a low doze of Amitriptyline to deal with the nerve pain. But this does not work for me, the spasms got worse and I had an arm tremor, as well as being very drowsy. I still try to work and so I had to go off that. But working gets difficult now, since I can not stand long or walk properly for longer periods. They send me to the urgent neurology clinic and will have phone appointment with the neurologist next week. No one explained why they can not find a knee reflex on my left side and a weak one on the right knee. The headaches are somewhat better and the spasms are less again, but until an MRI and spinal tap confirm a diagnosis I feel angry with myself and frustrated as I don`t know what the body does next.
They were not comfortable to do the spinal tab in the emergency room and want this as a planned/booked procedure.

Sorry for the long rant... I think I just need an answer now. While I am grateful it isn`t a brain tumor, this long wait times for anything really play on the mind. I will be happy to learn by reading about other peoples stories. Thanks for reading;0)

  1. You have been through quite an ordeal, Hamaara, one that is familiar to many of us. Valuable as it is to rule out medical conditions that share like symptoms, it takes a lot of time, expense, and energy to endure all that testing. It seems that you might be very close to a diagnosis. Here's suggestion for when the time comes to schedule that spinal tap: Insist that it be done in the Radiology dept. with a fluoroscope. There is no guesswork using this method. The scope painlessly guides them to the proper location of the spinal canal. You should lie down afterwards for at least a half hour to avoid getting a headache. I hope you will find answers and relief very soon! Please do update us on your test results, won't you? Looking forward to hearing from you again. Kim, moderator

    1. Thank you, that is great info. I heard about the headache from it, but not the rest yet.
      I had a new chiropractor appointment yesterday and was a bit shocked that even deminished reflexes in the arms. However, he got a weak response from the knee this time. Definately ruled out diabetic neuropathy, which is what I thought I was dealing with. He put ALS back as an option, but I thought that has no vision issues. Well ruled out one more "easy " answer. Clearly is concerned, which confirmed some of the emergency doctors thoughts. So this confirmation of MS is getting more and more real. But whatever it is the name at the end, frustrating when the body is painful and not wanting to work. I will post an updated after the neurologist. Thanks for taking the time to reply!

      1. So seen my GP and again the Babinski reflex not working right. Ruled out everything else, besides CNS disorder. But he put ALS and Guillain-Barre back as a possibility. Have an urgent referal for an MRI send in, so we will see how many month that takes now. But spoke well on the Neurologist the hospital refered me to for Wednesday. Honestly as long as it isn't ALS, I think I will be okay...

        1. , I hope you get some clear answers from the upcoming MRI! And I don't blame you one bit for not wanting it to be ALS. Please keep us posted, if you feel comfortable doing so! Best, Erin, Team Member.

      2. Well as promised, here is a quick update...
        I had talked to the neurologist over the phone last week. Turns out it wasn`t from the urgent neurology team the hospital had referred me to, but the referral from my GP in February; when I went in thinking it may be a concussion?! He specializes on migraines and stroke related problems. I felt not heard and he didn`t even listen to all the symptoms, saying I don`t present classic text book. Thinking it is more diabetic neuropathy, which was ruled out by two emergency doctors and the chiropractor. I also called the MS society and the diabetes society. Since my numbness and tingling are all on the left side and in my face, it isn`t consistent with diabetic neuropathy, or at
        least only a small portion of that. There is also the muscle spasms and am getting more twitches now. It`s strange to see things just moving on your body, like my fingers and
        even on my chin. The next time I will try to video this on my cell. But they seen the abnormal reflexes and positive Babinski sign. Than he thought I was to old (51 years)
        to be diagnosed with MS, as the optic neuritis was 8 years ago (well I had it 2 more
        times after in the same eye and he doesn`t know). Every professional I have seen is saying it is in the CNS and this neurologist wants everything to "fit in one pot". I felt like I needed to apologize to him for making it so complicated. He booked now an appointment to do a physical exam himself for next week. I will go and hope in person
        it will be better and that he might start to listen. He said he can not rule out MS, but
        was sure that it isn`t ALS. Now that part was good! In the meantime I am losing the
        ability to walk for longer than 10 to 15 minutes and my arms also start to feel weak.
        The heat is making things more difficult, so trying to stay in air-conditioning as much
        as possible. In the meantime I am trying to keep working, but some days I am not sure
        if my patients need more help or me. If it wasn`t scaring me so much, I would be
        laughing about it.
        Now waiting for the MRI results...

        Thanks for reading!

        1. Hi Hamaara. I hope that if this doctor leaves you with no answers you seek out an MS specialist. It is concerning that be believes you are too old to be diagnosed with MS at 51. That is actually a fairly common age for an MS diagnosis. The National MS Society has a tool for finding an MS specialist in your area. I might have shared this with you before, but here is the link again just in case: The MRI results should be very helpful as should the physical exam. Thank you for updating us. I hope you get a diagnosis you can be confident in soon and that it is not ALS. Gentle hugs! - Lori (Team Member)

        2. Woah! This neurologist actually said you were too old for MS? That tells me this doctor doesn't know everything and is likely not an MS specialist. Many of us were diagnosed at a later age - mine came at 54 although I likely had symptoms for a good 20 years prior. Please don't give up on getting answers - it sounds like something is truly wrong and you deserve to know what is the cause. Good luck with the next few appointments! Laura, moderator

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