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Decline in walking/standing

Okay while I now have an MS diagnosis from my GP (will see him later), still need the MS Neurologist to confirm this. They tried at first to say it's diabetic neuropathy, which several doctors, physiotherapist and other professionals have said no to. As it is clearly a CNS issue, possibly with some peripheral nerve damage?! But I really struggle on a personal level to accept this. I keep thinking "I am to lazy", keep pushing myself and get frustrated in the end. I was fighting to use the walker fir balance issues qnd weakness. Than manual wheelchair, but since my arms also give out, still need help there as well, or wait for the nerve fiber fatigue to stop and than continue. I was able to stand/walk for 15 to 20 minutes in July. Now I struggle to do it 2 to 5 minutes. Any feedback, please? I was told from an MS patient it was identical to what he sees me struggle with. Not able to my walks means I gain even more weight, which in turn isn't helping the situation. So I started using weights this week again and that works. So the muscle is there, but no more duration like I could before. I need breaks, but the muscle works. Maybe someone can help me understand my body?

  1. Hi . You must be getting awfully frustrated. I am glad your muscles are responding well to the use of weights. That has to be a good sign. I hope you get lots of responses and feedback from community members and that you finally get a diagnosis you can feel confident about. Thinking of you. - Lori (Team Member)

    1. So, crazy day yesterday. My doctor said couldn't find increased IGG levels, but was shocked to find Beta 2 Globuline levels up, which are tumor markers. So was wondering if we are dealing after all with cancer in the brain and/or spinal cord.
      So I read through the report this morning and remembered teaching from Dr Boster. Looking that up, it's either increased IGG levels OR elevated oligoclonal bands. My spinal tap clearly shows bands in the CSF that are not found in the serum (blood), so actually positive for MS. So glad I had this done. I have no answer yet as to why Beta 2 Globuline is up, but I guess confirmation it's MS. My doctor was thinking to just try MS drugs, but I pointed out that without evidence from tests the insurance will not pay for ir. Crazy to be relieved I likely have an MS diagnosis confirmation. But I just need to know what I am dealing with. It goes to show you that while I have a great doctor, a specialist is sooo important. Getting these test results to Dr Boster now and see what he says. Prayers are appreciated. Blessings to everyone reading 🙏

      1. I am sure it will be a huge relief to have a definitive diagnosis, . I hope Dr. Boster gets around to reading and evaluating the results quickly, so you can get moving on treatment and relief. Please continue to keep us posted if you are comfortable doing so. - Lori (Team Member)

      2. what are the ms drugs your on please

    2. I am not on any DMT's yet. I guess once I go to the MS clinic here, that will be the next step. Still don't know why the tumor markers are up too. But spend time yesterday to go through the McDonald criteria and all medical reports. This should now be enough for insurance to cover drugs. Also the second MRI now shows lesions in the juxtucortical area, 8 weeks before there were none. There are 2 bands in the csf not found in serum. Having a year worth of neurological decline hopefully not make this primary progessive?! But one step at a time.

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