Hand and toe numbness

[9196]

Hi guys!!! Im newly diagnosed.  Im on Tecfidera.  Ive noticed that my numbness has been intensified since meds. Ive never had a relapse. Ive had memory problems that went away. Come back...depending on how my day is going. I know in my heart, I have PPMS. From what ive read almost eveyone starts of with RRMS. Until they see how the diease acts. Dont know if I should continue with meds.

[supermum_ms]

It's perfectly okay to ramble, rant or even whine sometimes ;D

You might benefit from considering your anxiety levels......it is perfectly understandable to be dealing with anxiety after something serious and unexpected happens to us. Your world basically got thrown upside down only 6 months ago, and you've just recently started fighting back........breath!

It's not as common to hear about people being diagnosed quickly, but I often think that when it happen's fast, it can be a lot harder to come to terms with what it all means. DMD's often make MS feel more real and everything can start feeling like you've gotten on a fast moving train...

There is more research being done specifically regarding anxiety and or stress and how they effect people diagnosed with MS. I don't think it's a big revelation that stress and anxiety can potentially make an MSers situation seem worse and even exacerbate their symptoms but anxiety can actually be directly caused by MS or be a medication side effect.

I honestly believe, whilst anxiety in general needs to be addressed, when you have a medical condition like MS, it's even more imperative to be proactive about your mental health! You know your self better than anyone, and if there is the possibility that your dealing with high levels of anxiety or depression, since your diagnosis, it is definitely in your best interest to speak up and get help before it goes to far....

Hugs.......JJ

[9196]

Hi, My neurologist had made the statement "You could of had M.S. for 20 years." My symptoms first started with debilitating headaches. That first started 6 months ago. Since then I have had the nerotrax test. I failed miserably. I've always had a great memory. Not the case now. Its just scary when your in your late 30s and your memory comes and goes. As I had wrote in my previous post "Numbness in hands and fingers." I've had that for about 3 months, but seemed to worsen. Today I feel numbness in the back of my scull. I've never had a period that I felt better. I realize I'm going to have to wait a bit longer, for them to follow their scale... I try not to focus on the symptoms. It is frustrating when I'm at work..forgetting what I had did minutes before. All and all..time will tell.  Thank you for your reply. Sorry about the ramble:)

[supermum_ms]

I too was going to point out the misunderstanding above but i still think you actually have a few misconceptions about RRMS and PPMS.........PPMS (10-15%) in general is rarer than RRMS (80%) and out of all the types of MS, PPMS is actually a very slow developing disease. If you are rapidly declining over a 6 month time frame, that would definitely be inconsistent with what usually happen's with the slower progression, and worsening pattern associated with PPMS.

It's not always possible to look back and accurately work out if you've had MS for decades, depending on your age it would always be a possibility with MS. Spinal cord lesions are notorious and it's even possible that you are not out of your last relapse yet. You mentioned 5 brain lesions and 1 spinal cord lesion, which may seem like a lot but for someone with MS for 20 years, it would be more common to have a significantly higher number of lesions.

Not every lesion is symptomatic, lesions develop with out you even being aware, off the top of my head, research i've looked at are estimates an average of 6+ per year if the disease is left untreated (not on a DMD), so 'theoretically' with the lesion number you have, you could just as easily of had MS for a year or two and not the 20 you're speculating.  

There is a lot to being diagnosed with MS, working out exactly which type will take on average a couple of years. Keep in mind that even with out the relapse pattern of relapsing remitting MS when diagnosed, they could of started out with RRMS and over time (10-20 years) progressed to Secondary Progressive MS. Basically if you've 'ever' had a Relapsing Remitting pattern in your symptom/clinical history, it just can't be PPMS...........

I honestly believe it's too early to speculate on if you have a different type of MS than the more common RRMS at this stage, speculating isn't in your best interest if it's causing you any anxiety to do so! baby steps

Cheers.........JJ    

[9196]

My mistake on the misread. I see my neorligist in April. Will run it past her again. I also believe communication is key, between patient and doctor.

[9196]

Right now, im trying to stay away from anything white. My hardest opponent's are salt and bread. Thanks for the journal tip, will try!  

[jenphilly]

Your symptoms can vary day to day, but that does not mean your MS is progressing.  I am very lucky (everyone touch wood, quick), I have not had lesion progression in almost 4 years, but my symptoms vary and are worse today then they were 4 years ago.  

I know sounds so impossible to say, but try not to worry about what type of MS, at this point, try to focus on what triggers your symptoms...  what do you do on any given day that makes symptoms worse?  Everyone who has been here for a long time, will be rolling their eyes as I type this, I have always been an advocate of a food diary, but not just food, everyday for a month, keep a journal about what you did, where you went, what food you ate, even what the weather was!  You might be surprised to find a pattern for when your symptoms are worse, maybe its a reaction to a food or you'll notice that on days when you're numbness / tingling is much worse you did not sleep well the night before...  or when its really cold, or really warm, or raining, or or or :) Your body just adjusting and responding to new meds can trigger symptoms.   You might be surprised how much triggers symptoms.  For me personally, I know gluten is my greatest enemy.  Very cold weather causes MS hugs to kick in....  

The point of my babble...  there is so much more for you to worry and think about right now then whether its RRMS or PPMS, and your neurologist would not tell you no you're wrong, if she does not know to give you the answer.  But, I wish she would have tried to redirect your energy and thoughts to what might make a huge impact on how you feel today!  

I hope you are feeling better and the numb and tingling is not so bad!!  

[immisceo]

Whoa. Reread what Ess said.

~10-15% of folks with MS have PPMS.

~50% have the symptoms you mention.

Ergo, your assumption about what necessarily indicates PPMS is wrong.

15% ≠ 50%.

Your neurologist doesn't sound like she's communicating well with you and inadvertently adding to your worry. No reply is NOT a reply. It's too early for a competent neurologist to tell you what form of MS you have. She should have felt comfortable telling you that. Neurologists or any doctors need to be able to tell you "I don't know".

I think it's a mistake to impose your perception of what was meant by her silence. Ask her, "what do you think about that" if she's reluctant to comment. But personally, I would find this a potential deal-breaker if it continued. I expect the truth from my doctors and a collaborative relationship built on strong communication.

[9196]

Hi, Thanks for your reply. Im a woman who is 38. Dont know how to change my statis...not that that matters..ill figure it out. My neroligist says i could of had MS for 20 years...but who knows. Im not at the point, of having difficulty walking yet...but the numbness seems ta be getting alittle worse from day to day. I recon that the numbness slowly creeps its way throw the whole body in time. I dont have any friends or family who have it. So this sight is very benifical to me. Oh...you talked about steroids.  I asked my doc if that would help me in anyway...her reply was no. Hope you have a good day...9196

[9196]

Hi, I dont recall where ive read the sats about PPMS. Probably just about every artical ive read. In your opinion...almost half have PPMS...wow!  Thank you for your reply:) Im trying not to get ahead of myself in my jorney...The unknow is aways scary. Thanks,  Hope all is well on your end...9196

[9196]

Thank you for your reply:) Have a good day!!! 9196

[9196]

Yes, I do have one spinal lession. Plus multiple brain lessions. Ive been getting worse for 6 months now. All started with headaches, and blew up from there. In my recent diagnosis... I looked at my Nero. and told her I knew it was PPMS. She did not reply. To me that said it all. Just the scariest thing in the world...to see my quality of life decline so fast. Im trying to stay active, but sometimes its so hard to get out of bed. Enough with the woo is me:) Hope you are doing well today! Thank you for your reply:) 9196

[supermum_ms]

Hi there,

You said "from what ive read...bladder issues and memory problems. ..PPMS?" but you've actually got at least one spinal cord lesion, which would be your most likely explanation because in MS, spinal cord lesions are absolutely associated with bladder issues.

Please consider if your concerns and reluctance towards DMD's could be inadvertently leading you astray.....breath!

"Ive noticed that my numbness has been intensified since meds." ....It's possible that you are laying blame on your meds, when the worsening of your symptoms since your attack and diagnosis in late 2014, would actually be more consistent with an MS relapse.  

Basic relapse rule of thumb.....if your symptoms return 'and or' worsen 'and or' you experience something new, for longer than 24-48 hours and it's been at least a month since your last attack, you could be having another relapse.

When your newly diagnosed or just started meds, it always a good idea to speak to your neuro, when there is a possibility that your symptoms worsening is due to a new relapse.

Cheers.......JJ

PS i agree there isn't anything you've mentioned that would be suggestive to me, that it 'could be' PPMS and not RRMS  

[HVAC]

It is too early to tell if Tecfidera is working. It took me a year to be diagnosed with PPMS.

PPMS is subtle until you get into your late 40's or 50's. It is described as wading from shallow to deep water. It is gradual until you are in your late 40's or 50's. It is said one day you realize you do not run as well, then you can't run at all, then you notice your walking is harder.

I did not even know I had MS it was so subtle. I do not see changes in my symptoms. They gradually get more pronounced. I think about the changes in retrospect.

They use DMDs on PPMS. They just do not get as many PPMS patients in studies so they do not really know what works.

You do not start with RRMS and go to PMMS it just takes a doctor following you for a year to decide it is PPMS.

I had my first and only attack in 1965. I was in the hospital. I had double vision, vertigo, cognitive impairment, and tremors. I have had all of those since they have never gone away. They knew I had brain damage but not what.When I was 46 my doctor decided there was something wrong. She did a neurological exam and found the MS. Since my symptoms never changed it took two years to be diagnosed with MS. So essentially I have had PPMS my whole life but they did not figure it out until my late 40's. I have never been on steroids my neurologist says they won't help. My only change is it is getting harder to walk and I fall more.

Alex

Alex

[essdipity]

Hi. I agree with Imm. It's far too soon to know what's what, and MS neuros usually wait at least a year before deciding this question. For now, you just have MS.

Where have you read that bladder issues and cog problems are a sign of PPMS? That's so not true, else way way more than 10-15% of MSers would have primary progressive. Probably more than half, at a guess.

Symptoms depend on lesion location, and lesions can and do form anywhere in the cns, in no particular order that science has found. Brain functions, of course, can go astray due to brain lesions, but still, lots of people have these with no discernible cognitive impairment. For bladder function to become dysfunction, all it takes is a lesion (or more than one) anywhere from the brain down the spine. Urination is actually a complicated process.

So please don't draw any conclusions based on the experiences you've had thus far.

ess

[9196]

Ty, but from what ive read...bladder issues and memory problems. ..PPMS?

[immisceo]

Disease-modifying drugs do not treat symptoms. There is no reason to discontinue your medication at present based on what you've stated. As you intimated, the category of MS you may be facing cannot be determined immediately. It is only over time that RRMS v PPMS can be determined.

You are newly diagnosed. This is often a scary, stressful time full of mental adjustments and coming to terms. But please try not to get ahead of yourself. Time will tell.