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Which type of MS? PPMS experiences please.

Hello,

So it’s been a while since I posted. And I’m two and a bit years into the MS diagnosis train. And thank you all for your ongoing support.

Firstly diagnosed with migraines and worrying, then functional neurological disorder. I have seen a wonderful professor in urogynaecology. He thinks my bowel, bladder and various down there problems are early MS (without me saying anything about my journey)… And believed me and this two year fight I’ve been having with various doctors once I told him the whole thing.

He found neurological damage today and will refer me back to neurology and order full MRI brain and full spine, which is great. I now have hard evidence that I have Neuro damage.

So hopefully I’m one step closer to a diagnosis.

My question is to people with PPMS. Because this has never gone away in the two and a half years. I have had constant symptoms with a slow worsening. The bladder and bowel thing is new, but the tingles, tiredness, pain, spasms, etc etc have been there relentlessly every day.

Most stories I read (correct me if I’m wrong) people seem to have one thing happen one day, like a foot goes numb, maybe spreads and lasts for a time and goes. Or one day their leg doesn’t work. Then later (months maybe years)something else will take a hit. But each has a specific period and then quiet for sometimes quite a while.

This is not my experience. Everyday I have symptoms to varying degrees. But they are definitely gradually worsening and a new one adds itself into the mix every few months.

How does PPMS feel? What is your experience?

I just want to ensure I’m prepared.

Thank you, lovely people. Xx

Hi. Just reading your post and wondering what tests you’ve already had done? My symptoms have been constant for coming up 2 years now (July 2016) and have never gone away. I don’t have a diagnosis of anything.

Hi! :slight_smile:

I have had MRI brain and c-spine. Two lesions but “normal”.

All tests for vitamin d deficiency, Lyme disease, b12 etc etc. All clear.

I’m sorry you’re in the same boat. How are you doing?

I also have 2 lesions that are ‘NORMAL’ . I’ve also had a lumbar puncture, visual evoked potential, nerve conduction tests and an EMG. All were negative. Negative for Lyme diseases and all the other usual stuff they test for. Does not explain why I have what I consider classic ms symptoms but mono phasic with no remissions. It’s all getting very tiresome and I don’t know what to do next. How did he detect neuro damage on you? Hope you’re doing ok in the circumstances.

He did bladder pressure studies and it showed bladder spasms, muscle weakness and retention. I have loss of feeling everywhere. He said the nerve that controls bladder and bowel storage is damaged to cause this. He would expect a lesion around S2/3. My MRI was March 17. So I’m hoping to see changes on this one.

I also had nerve conduction tests that showed damage last year. But they could not say what was causing it.

No lumbar yet. I might push for this, this time around. Was your Neuro happy to do this?

Having seen a couple of neurologists at local hospital and having a normal mri I was told they are not prepared to give me a lumbar puncture. I wasn’t happy with that so went and saw a private ms specialist who then wrote to my GP requesting her authorisation to be referred to him in the nhs to have repeat mri with contrast dye plus lumbar puncture and vep. Thankfully after discussing it with the other practice partners they agreed to refer me. However, even after the new results being negative, I remain unconvinced and will request another mri when I have my follow up in December…and so it continues…

Wow. Good for you for pushing. It’s so exhausting isn’t it. But I’ve resigned myself to the fact that it’s going to take forever…

I cried having the tests today. Because he could literally measure the symptoms I am having, not just take my word for it. It showed me that it really isn’t all in my head. So at least it’s on paper now. He said he would ensure I’m monitored now, which is good if nothing shows. But I’m used to getting my hopes up with doctors and finding nothing, so I’m trying not to do that.

I really hope that you find some answers soon. I’m sorry you’re in this horrible limbo with me.

Hi, I’m new to this board and would welcome the opportunity to outline my journey. First off, let me say I was diagnosed with depression and started treatment on Celexa in 1996. About three years ago the medication stopped working and I was switched to Wellbutrin, which is working great. That said, last summer I started having trouble with exhaustion; I would call the type of walking I did the funeral shuffle because I would drag my feet. My typical two mile walk with my dog went from 1 hour to 3 or not at all on many days. I napped most of the time. I started having the sensation to pee frequently even when there was only a small amount of urine but I did not have a UTI. Fast forward to this past winter, January, 2018, and my words started slurring. I’m a teacher at a local community college and I would be lecturing and the words would slip and slide, making me sound as if I was drunk. Add to that I began forgetting information I’d been lecturing on for over two decades. The information was gone; my mind was blank. Add to this frequent migraines, dizziness, a few falls from vertigo, and tremendous fatigue. In February, 2018, I took a selfie and noticed my smile was crooked and that one side of my face appeared ‘fallen.’ I’m 63 by the way. In April of this year I woke up (5 am) to find the right side of my face completely numb. I stuck a pin in my cheek and couldn’t feel a thing. Later that morning (9 am) the numbness spread to my right arm and by the time I got to the ER it had spread down my right leg. I underwent an MRI and CAT scan at the ER, both of which came back normal. Also, my BP was perfect–112/62. The doctor on call at the ER did a pinprick test on my feet and I couldn’t feel anything on my right side. The hospital kept me overnight for observation and I was released the next day with a diagnosis of anxiety and a recommendation to see a psychiatrist. Fast forward two days and the numbness turned into severe pins and needles, as if the right side of my body had gone to sleep and was waking up, also spreading to my left side. A week later I started stuttering and displaying tremors. My right leg became weak, forcing me to drag my foot at times and I developed painful pins and needles in my fingertips and toes. Again, blood pressure perfect. I saw two neurologists who concurred I was suffering anxiety attacks and one of them put me on an anti-anxiety medication which made me feel like I was drunk. I couldn’t function so I stopped taking it. Important to note, while on the medication, the tremors and stuttering remained, as did the pain, weakness, dizziness, and fatigue. Fast forward to now, May 31, 2018 and this is what I have: vertigo resulting in frequent falls because my brain feels like I was spinning in a circle and then stopped; pins and needles in my fingertips and toes at level 6 most of the days but up to a 10 at night; stuttering when I speak; tremors in both hands, more pronounced on my right side; weakness in my right leg; unsteady gait; fatigue; lost of short-term memory; same crooked smile and drooped face; drooped right shoulder; severe headaches from the temple to the occipital region and up to the opposite occipital but sometimes behind my right eye, forcing me to keep my eye closed. In the past two days add dry mouth. Yes, the numbness returns periodically. My problem is when a doctor sees me and hears the stuttering and sees my tremors he/she says it’s stress, even thought my BP is low. I had another MRI and was told I had enlarged ventricles with fluid build-up which matched an MRI from 2015 when I was in a car accident. Note: The 2015 MRI was taken the same day of the accident so the accident did not cause the enlarged ventricles in the brain. The neurologist I saw today, the one who did the most recent MRI, said it’s all stress and I should seek counseling, perhaps enroll in an out-patient program. Perhaps take stronger anti-depressants. I’m frustrated and angry, but, honestly, not depressed. I just want someone to listen and not jump on the bandwagon the ER doctor created back in April by diagnosing anxiety. Have any of you experience any of this symptoms? I know my body; this is did not come on because of stress. This is organic. Help, please.

Hi Tinthia

You’ve stuck your post onto the bottom of one about something slightly different. It often helps, and you get more relevant answers from starting afresh. What you do is hit the New Thread button, give it a title and then post what you need to have read.

Meanwhile, it does sound like the MRI you’ve just had would have shown demyelinating lesions if you had MS. Plus, the neurologist would have been able to see clear signs if he thought MS was likely.

Perhaps you need to see your GP and ask what happens next as you clearly have unexplained symptoms.

Sue

Hi Kate

When you talk about relapsing remitting MS, you expect that all the symptoms you start with will completely remit and you’ll be back to where you were before having an initial relapse. This isn’t necessarily true.

When I had my first relapse 21 years ago, many of the symptoms remitted, but not all. And I was never able to feel my feet again. This is something that surprises people who are initially diagnosed with RRMS, that not all the symptoms will remit. And there were problems that came as part of a relapse that never ever improved. So for example, many people with RR, have ongoing bowel and bladder problems. Or they suffer bad damage to a nerve that never remits. So for example, I lost my mobility as part of a relapse in 2012. I’ve not been able to walk properly since. Prior to that even, I developed foot-drop in my right leg, and that never recovered. Sometimes another nerve will compensate for the damage done to one nerve, so it seems like remission, but isn’t really.

This is the reason for taking disease modifying drugs (DMDs). They’re like an insurance policy for defending against relapses. Have a look at https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid Most people are diagnosed with RRMS initially at least, if it seems clear thereafter that you are progressive from the outset, your diagnosis could change. But I would expect that the neuro will aim to start you off with a diagnosis of RRMS and offer you some DMDs.

Best of luck with the diagnostic process.

Sue

Hi sue,

Thank you so much for the clarification. I was worried that none of the tingling, fatigue, pain etc have remitted, whereas the bigger things have. And the bigger things change or come back worse. So I’m glad (if that’s the right way of putting it) that you say RRMS doesn’t necessarily stop completely. You’ve put my mind at ease, thank you.

Xx

Hi, new to this forum but having read your post I could relate to your story. I started out with my thumb & finger going numb. I called to get a GP appointment, when I gave my symptoms I was advised to go to A&E. They ruled out stroke took blue tests, but couldn’t say what it was. A week later my left leg went numb & the right side of my face & head. Rang GP & again straight to A&E. this time they kept me in. MRI & LP done. I mentioned MS, but a he all he would say was they hadn’t ruled it out. Put on steroids for 3 days. When I was discharged demylation was explained, no mention of MS. however my paperwork said MS likely. I called the MS Society (wonderful people) they explained limboland and CIS. shortly after I started to get more new symptoms. I would get an electric shock feeling when I bent my head. Soon that led to my whole body tingling like goosebumps & pins & needles. Without going on… Within 9 months I had a diagnosis of RRMS. After looking at a lot of literature, I think I was’lucky’ to be diagnosed so quickly. I started copaxone injections & a range of other medications. That all happened in 2016, so back to why I responded to your post. My initial numbness has never gone away, the electric shocks when I bent my head did go away but I also had dizziness like being drunk, server spasms in my right arm. My legs have weakend to the point that I now use a motor scooter, as I suffered from fatigue & had some falls. I am now suffering from twitching all over my body ankle, hip, legs, hands, shoulder & sometimes the whole body. Also my cognition had severely deteriorated. Since I first had symptoms I have not had any day without something happening. My last visit to the neurologist was not helpful. He wouldn’t say that I now have PPMS, told me to stay on the injections just in case they are being a help. I do now understand the difficulty in diagnosing MS, but I had to research for myself. Looking back I just wish someone, doctor, nurse, anyone would have told me what may be ahead. Sorry if I’ve waffled on! Thank you for reading. Stay positive, have a laugh, don’t let ms rule. It is what it is.

Hi I am new to all this, too. I am a woman in my 64th year and I have ppms. I am going for a spinal tomorrow. This all is confusing. Apparently everyone I know seems to have known or know someone who has MS. I have never been told by any one over the course of my life someone has MS. Mine is, apparently, slow moving and a mild case. What the heck does that mean? Many people, believing they are doing me justice by saying how non-invasive my MS is only makes me feel even more confused. How do I know this might not speed up and I’ll end up being in a wheelchair sooner than later? It scares me, it does. I still think there is a lot unknown and quite honestly my depression is really in the pits. My depression has changed a lot over the past, let’s say five years. Aside from being more depressed and difficult to handle how my depression and what depresses me has changed, and it has changed a lot. I guess this is part of the picture, but I do not know. That’s one of the reasons why I am here because, maybe someone else knows what I am going through.