I'm scared and need support please.

Primary progressive MS
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Hi all,

I had to take time away from most of the internet since it wasn’t helping me to spiral down MS related rabbit holes. However, I’m not sure what else to do at this point. This is a pity party post, and I apologize for it.

I’ve been dealing with a myriad of symptoms for over a year now. My sensory symptoms come and go throughout the day. However, symptoms affecting my left calf and knee stay fairly constant. I go through periods of my leg feeling better and less tired, usually lasting a few days or a week at most. It doesn’t last though. I go back to it feeling tight, tired and weak and the cycle continues.

I feel like I’m just slowly getting worse, and last week I pushed myself to stand and walk for too long. I spent maybe 45 minutes standing and walking around Goodwill with a cart. I thought I was okay until I tried getting in the car. My left leg felt so heavy and clumsy, even with me focusing to lift and move it. I had a panic attack in the car afterwards. I feel trapped in my own body.

My bathroom habits have also been awful for nearly a year now. My bowel movements have been chronically soft since March, and this hasn’t gotten better. I’ve tried adding more sources of fiber in my diet, drinking more water, fiber supplements, pre and probiotics, mindfulness and stress relieving activities, fermented foods, etc. Nothing helps.

I’ve just been dealing with it so far, but now I’m having issues passing these soft stools. I literally thought I had a solid movement this morning from the feeling of strain, but it wasn’t even formed. I want to believe it’s from stress, but I know it could be related to MS as well.

I’m waiting to get into another specialist so I can hopefully get a diagnosis, but I’m really struggling to not lose hope. Every day and week feels harder then the last, and there’s no end in sight. I feel like I’m going crazy, and if I didn’t have O bands, I’d believe that I’m doing all of this to myself. I keep ticking off more of the common symptoms of PPMS, and at this point I don’t have hope that it could be something else.

I try to give myself consolation by telling myself that at least I had 25 normal years before this. To be honest though, it hasn’t been helping recently. If I had known this was coming, I would have done things differently. I would have gotten married, had children, saved up more for the future, tried to buy a home, travel and enjoy life. I know I may still be able to do these things, and I’m trying to remember that. However, it’s always overshadowed by the worry of how much I’m going to lose to this as I get older.

I know being in limbo for so long hasn’t been helping my mental state. I’m sure the uncertainty of everything is where the majority of this hopeless feeling is coming from (I hope it is at least). I just don’t know how I can keep being happy when my life feels like a funeral that never ends. I’m always grieving and worrying about something, be it my physical mobility, dreams, sense of self, or how this is affecting the people I love. It’s a blanket of sadness draped over everything.

Have any of you lovely people been here? How do we rise above it? I refuse to believe that my life reached it’s peak at 25. I refuse to believe that I will always feel like this. There has to be more.

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There’s never any need to apologise for a pity party. I often find that the best way to not feel a little bit miserable all the time to have regular periods of being a complete misery and wallowing in it. I think it’s because it helps my mind to blurt out all of the rubbish for me to try and put some order to it, to enable me to understand what I’m actually worried about. I’m not sure if that makes any sense at all, but it does in my mind!

It sounds like you’re going through hell, which is completely understandable with all of the stuff going on. I think you’ve got two priorities though, getting a diagnosis of something, and getting mental health support. It really sounds like you’re struggling with depression, and that’s going to be affecting almost every area of your life so I think you really need to get some professional help, like therapy, and potentially look at antidepressant medication. If you have MS, and have lesions on your brain, then it could actually be a symptom of MS not just a Side effect. The area of the brain that’s controls depression can be damaged just like any other nerves, so you may well need some medicine to counteract it. When I was told this by my consultant it really changed the way I looked at my own depression, it felt like I was less to blame for it even though rationally and logically I know I wouldn’t have been to blame for it anyway. Also don’t forget that we’re bang in the middle of winter so seasonally affected depression is at its most lively. February is a miserable month, I’ve noticed looking back that it regularly coincides with some of my most depressed periods.

It doesn’t sound like you’re in the UK, so I’m not sure what to suggest about getting a diagnosis. It sounds like you’ve had a lumber puncture done in the past, because you suggested that you have oligoclonal banding in your spinal fluid. Did they do MRI as well? If those records are still available they’re exactly what a radiologist needs as a baseline so that they can be compared to any new MRIs. If you have got MS then you need a diagnosis so that you can start on a disease modifying therapy. When I was diagnosed way back when, there were only a couple available, and they were only prescribed to people who are having a lot of relapses so nothing really changed for me after being diagnosed. But the way they treat people now is different, see you really need to get onto a neurologist. As your bowels are really getting you down I’d see a GP as well, any changes to your bowels really need to be looked at carefully because there’s a whole host of things that could be going on, and ms is only one of them.

My mantra for dealing with it as always being to remind myself that if this is as bad as it gets, then I’m okay. It helps me to remember what I’ve still got, rather than to gaze into my crystal ball and think of all the things I could have had. It’s easier to say than do though. Cognitive behavioural therapy really made a difference to the way I think and catastrophise, it’s been 15 years since I first was introduced to it in therapy and it hasn’t become any less effective. The thing that took me longest to get my head round with MS is that every time a bit of me stopped working I would have to start again with my new normal, so it was a bit like being diagnosed again every few months.

I’m not sure of any of that is going to help, I’ve had quite a ramble! Be kind to yourself :blush:

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Hi @cymroglyn!

Thank you for your sweet response! I actually completely understand where you’re coming from. When I notice that I’ve been feeling down for more than a day or two, I usually sit down and have a good cry/pityfest. Though it may not change what’s happening, it helps me process how I’m feeling, what my feelings stem from and (most of the time) why I’m feeling the way I am. The alternative is holding it all in, and that wrecks me emotionally after a while.

I have been struggling badly with my depression and anxiety since everything started. These days, being happy and in the moment is so hard for me. It makes me feel guilty, because I want to meet the people I love where they’re at when spending time with and talking to them. My inner dialogue beats me up when I feel like I’m bringing people or “the mood” down. I’m so thankful I have a therapy appointment today. Although I’m a bit worried about adding another med into the mix, I think I’ll ask her opinion on if I’d be a good candidate for antidepressants. I also detest January/February for bringing me SAD (vs my good old “regular strength” depression lol). I hope you’ve been able to fend off the gloom this time of year seems to bring!

I’m across the pond in the middle of the dumpster fire that is currently the U.S. I’m looking into the Mayo Clinic, and hopefully they’ll let me know soon whether their neurology team can offer me a spot! I’ve had brain MRIs with and without contrast in December of 2023 and March of 2024. They’ve been normal so far, which I try to take as good news. I also had MRIs of my lumbar and cervical spine in March of 2024 with and without contrast (they were normal), and an MRI of my thoracic spine in July of 2024 with and without contrast (also normal). In September of 2024, I had some blood tests for some other conditions as well (Syphilis, West Nile virus, HIV, Western Lyme, Bartonella, Lupus and Sjögren’s syndrome). These have come back negative too.

I want to believe that I have something that’s weird, but ultimately treatable. However, my deep dive into MS research and other causes of O banding has the majority of me convinced I have an early presentation of PPMS. My brain looks at the information I have, points to that diagnosis, and says, “Nothing else it could be makes more sense then this”. I really hope I’m wrong though. Thank you for mentioning seeing my GP for my bowel issues! I’ll need to make an appointment to bring that up. It would be lovely for that to be something completely unrelated. :grin:

Your mantra reminds me of something I was told by another person with MS. In their words, “I have found acceptance is the antidote to anxiety. Work on telling yourself you are okay, but if not, you can deal with it. Anxiety likes to tell you the worst will happen and you won’t be able to deal with it. We get absorbed in fighting the first part, but it is the second part that must be addressed to really help anything.” I’m trying to let go of things I cannot control. It is easier said than done, but I’ll keep reminding myself of the good advice I’ve received from you and others. It truly does help, so thank you for that! :smiling_face:

If you don’t mind me asking, how were you able to wrap your head around restarting your new normal? I’ve found it difficult to accept that the cycle of loss, grief and adjustment may never end. I know change is a part of life, but when these changes cause pain… I’ll stop my ramble there lol. Thank you again for responding, it did help! I’ll do my best to be kind to myself, and I hope you do as well :blush:

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Hi
Extremely frustrating
You mention all your MRI scans have cone back normal ie no new or old lesions seen have you had a lumbar puncture to diagnose you further or are they just relying on Mri for a diagnosis
Do you have any other symptoms of Ms

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Hi @karenoconnor352!

Currently, all of my MRI scans have come back looking normal. I did have a lumbar puncture last March that showed 11 unpaired O bands in my spinal fluid. Something seems to be causing inflammation in my nervous system, but no one has been able to tell me what yet.

I met with one neurologist last May who told me I most likely have MS due to my spinal tap results. When I asked him why he had diagnosed me without lesions on my MRIs, he told me that he believed I was a part of the 5% of people who show clear MRI scans early on. At the time I wasn’t sure that I should trust his judgement, so I met with another neurologist for a second opinion.

My second neuro said that I likely had something besides MS, and we needed to rule out everything else first. After my most recent MRI scans in July, he said he was comfortable with my doing annual MRI scans to view for changes. I’m supposed to meet with him following an EMG, but due to issues with my insurance, I’ve had to reschedule it twice now. Until I get the EMG done, I’m stuck in limbo waiting. This is why I decided to reach out to the Mayo Clinic. The alternative is waiting another 6 months and hoping I don’t get any worse during that time.

Currently, my daily symptoms are numbness in the left side of my face, nerve pain/altered sensations (most of the time it feels like ice water is being injected into my veins/muscles), body wide muscle twitching/fluttering, weakness/tightness in my left calf, decreased endurance while walking (my low back and legs will feel quite painful and heavy after 10-15 minutes of standing or walking), numbness/tingling in my hands and feet (this is controlled pretty well with Amitriptyline), bowel issues and numbness/tingling in my left leg.

Most of these symptoms come and go throughout the day. Sometimes a symptom dies down for a bit (usually a few days, but I have noticed some symptoms being gone for 1-2 months). The issues with my left calf have been pretty constant since they first began. I’ve never had a relapse that I can pinpoint.

I apologize if this response seems messy! Tracking symptoms that constantly change and evolve has proven difficult to do while working and trying to still show up to my life. I hope you’re having a good day today!

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That’s a good question! I’m not entirely sure if I’m honest, I think some of it is down to the fact that it is what it is, and I’ve learnt not accepting it is ultimately fruitless and is a waste of energy. I had to retire because of my condition about seven years ago, and I think that has helped as well because I no longer have to fight it to keep working.
It’s interesting that you said you find yourself avoiding meeting with friends because it brings the mood down. I used to find that if the conversation was getting a little bit dull I would steer the conversation around to ms. Apart from putting me back as the centre of attention, because I’m needy obviously :wink:, people generally were interested because it’s not something many people know about and they often avoided asking questions because they thought it might upset me or offend me. Opening the floor to ask me anything worked really well. It probably helps that I am a glass half full sort of person, so I was never full of “woe is me” especially in public. Talking about it with a bit of humour and just about it as a fascinating subject helps me to sit on the outside looking in as well. I did once take a course in what’s known as A.C.T. or acceptance and commitment therapy. Whilst I didn’t feel at the time like it had any kind of benefit I think some of it did actually sink in so maybe that played a part in it as well.