Welcome... I have PPMS was diagnosed in 2008. Before that I was diagnosed with Fibromyalgia, Hashimoto's disease, and Osteoarthritis. I have a strong family Hx of autoimmune diseases. I had been check for Lyme Disease many times over many years as I live in an area with a lot of Lyme... all negative! I found myself falling frequently, thought I was just a klutz :) One day at work I fell (I managed my primary care physicians office) and my boss saw me and immediately ordered a brain MRI because I was also working many extra hours and having difficulty keeping up with a job I had been doing for 13 years. My MRI showed lesions which cause him to refer me to a neurologist... she ordered a spinal tap but told me that she felt before she got the results that I had MS... the neuro she referred me to for the spinal tap met with me and basically said the same thing... she did the tap and I was postive for bands... I changed to her from my neurologist, we clicked. She sent me for neuropsych testing who also felt there was a problem with reduced processing speed, short term memory and word finding issues... in the end... I had my MRI in May... spinal tap in July... Dx of PPMS August 1st. She feels I have had it for 20 years... she explained PPMS usually is more cognative issues, less physical (although I do have some physical) and is a steady slow decline... no relapses. There is currently no medication for PPMS. Good Luck in your adventure!!!
~live as if all your dreams came true~
I am desperant to hear how things started with other peoble. I just started to have problems a year ago. It started with a tingling/numb big toe, and then spred to all the other toes and and pain in legs.
At the same time I had a back problem so my doctor said it must be connected, and said it was Spinal Stenosis. I started doing back exercising and got better in the back, but my numbness was always still there. Then in November I got worse, and was diagnosed with disc problem, but I could feel that that pain was different (going from back to toes) and could not even sit. It took 2 months to get better, but numbness/tingling was still there.
I went to a special "training hospital" to learn about the spine and exercises that was specialy for my pain. At the same time I told the peoble there that it was so strange that I seemed to have the same pain (that moves around) starting in my hands. They did not know what to think of that.
But a month after this program I got the first tingling/numb feeling in two fingers on the left side, and my feet had been getting worse, now I was numb to the ancle. Then soon it were all the fingers on that side and so it started on the other side and the palms too, but it is not as bad though.
Soon after this I got numb in the left side of the face and then got strange pain just above my right eye one day and few days later beside my nose (right side) and then under my chin (right side).
Then I decided to go see a neuro, he sent me to MRI of the neck and now of the head, the neck showed nothing, but I have not seen him since the head MRI, will be going in few days. For the last two months I have been having more symptoms like muscle "movements/cramps", some kind of chills in half of my head, or sometimes chills in stange places.
Also two times I have had a very high tone in one ear, and when I was typing the other day, my hand fell down. I think compairing with many other peoble, like you all, that my symptoms is not very bad, they are "still" mild, but my tingling/numbness is always there and getting worse and I have more pain all over, but still the pain is not interupting me too much.
Maby because I am so lucky that I can just work when I can or feel like, I am nearly my own boss. But if I am typing or writing, I soon have to take a brake. I usually have high tolarence for pain. I just want to know what this is (if it could be PPMS) I am 43 years old female.
Can any of you relate to this? My EMG was ok, my balance is ok and I think my eyes are normal (trouble focusing sometimes, but that must be the age). We have been looking into many thing's, like polyneuropathy, B12 is ok. And now I am down to thinking if PPMS is possible, I am not a paranoid type, so I just want to be realistic. (Sorry about my English)
Thank you so much for reading this, and please let me know what you think.
Best to you all,
Dagun, I personally think it is way too soon, especially without any treatment, to dx PPMS.
To answer your question, mine started out so mild, I would never have guessed I had a problem. The first to show was fatigue which I thought was from having a houseful of kids and being so active with them. Then there was the horrible backache that I thought was from carrying babies. My last two were close together in age. Then came muscle cramps in my legs and feet that would wake me from a sound sleep. I thought I was low with potassium. Next was burning feet and then a thigh. I blamed it on the kind of work I did.
I became alarmed when I no longer knew where my foot was on a ladder and had episodes of freezing in place from my wasit down. I went to my family doctor. He patted me on my head and said I was getting too old for the type of work I was doing. A few years later I switched to an internist that said it was a little bit of arthritis. I was scared by this time and began going to different specialist...none finding a thing wrong. I found my first neuro who said it was a pinched nerve in my neck.
By the time I had my first visit with him, I was unable to drive, unable to work and was in a wheelchair for any distance walking. I sat with him for three and a half years. When my dominate hand became floppy, I knew I had something much more serious which brought me to my current MS specialist. She dx me in twenty four hours and I was in treatment. Yes, at first glance she did think it was PPMS because nothing ever changed. I had a flair and it stayed. She refused to dx me with a type of MS until I had been in treatment for a full year.
The year was complete and to my surprise it wasn't PPMS at all but rather PRMS. I was so relieved as there is treatment available for it.
So, please get more than one opinion before getting stuck with a label that may or may not be true.
Thank you so much for telling me your story, you have been having symptons for so long without knowing, I admire your patience (don't know if my english is right). I think I could not wait so long for knowing what is wrong with me, but ofcourse I will talk to the doctor and more doctors :).
I feel like I must keep looking for answers, and I have been reading about everything that comes up with simular symptoms, but nothing has fitted as well as PPMS as far as I can see. I have also thought of cancer, my father in law died of cancer two years ago, there are so many symptoms for that. Is there anything special that you think in my story that rules out PPMS? I got much worse the other day when I stayed in hot tub for half an hour, after that I realised that it fits with MS and probably more syndromes. Thank you so much :)
The deal is you have to be diagnosed with MS and followed for a year to be diagnosed with PPMS. There are many things which act like MS so it can take awhile for Doctors to sort it out. For me it took two years. I had a lot of blood work to rule out many other things. Five MRIs , emg, BAER, vep, and a LP. It took years of being followed every six months in my case.
Ok, thank you for your informations, I realize that I do have to face it, that maybe I won't know for sure for some years then. But I still would like to learn more about peoble that started with simular symptoms and what else it could be if anyone has an idea, because I have to keep searching. I am pretty realistic, so I will not start to imagine things. My son had a bad syndrome witch took a long time to diagnose from 6 months old to eight years old. So then I learned a lot about noticing symptoms and read everything I could, that helped me alot. Thank you so much for your help.
The reason I think it may not be PPMS is because you have not been treated yet. If you have PPMS steroids would not help you because PPMS is characterized by nerve degeneration and not by inflammation. So until a physician has had a chance to work with you, you just don't know.
You are smart to continue seeking answers. I wish I had pushed. Too much damage can be done to our bodies as we wait.
Thank you for explaining, now I am learning :).
Yes, I am for example afraid that, no matter what syndrome I have, that some nerves are allready damaged and I will never have a normal feeling without tingling/numbness in my hands and feet again. I also was reading about that drinking too much Cola Light ( with aspartam) can be very bad for the neuro system, so I need to awoid Aspartam. Thank you for your support!
Thank you Debbie, for sharing your story with me. So you do not have tingling/numb sensory problems? I don't think I have so much cognative issues, even though I have been saying to everybody for 1 or 2 years now that I am forgetting so many things, and often have to read the pages in the newspaper's again and again because I did not notice what I was reading, that could also just be my age?
I met with my neuro today, he was telling my what my MRI "said". He said that there was a minor periventriculer "bright changes" (dont know the right English for this) but that this does not tell him anything. He also said that he would not think PPMS if it is MS and think's we should wait for more symptoms before LP. He says PPMS would happen so fast, that it would be dx almost right away. But so much that I have read says different.
He told me to think of if I could have any symptoms from stomack, lungs and more, because cancer could be triggering these symptoms. I am thinking of meeting my regular doctor for a checkup, to try to make sure that it is not that.
But please keep on telling me, if you have any ideas for me.
Thank you so much and all the best to you :)
I disagree with the doctor saying PPMS would happen so fast that it would be dx almost right away... I was diagnosed with PPMS in July of 2008... My first real symptoms started showing up in August of 2004, but looking back on it I can go back as far as 1995 and see symptoms...
My son was born in May of 94 and I had horrible problems after his birth which led to a hysterectomy in 1995... It was after the hysterectomy that I first saw symptoms but I just blew them off... It wasn't until 2004 that these symptom really started affecting my life...
What really upsets me is that it took forever to find a doctor that would really believe me...Once my symptoms started going though they just kept getting worse... I had 1 neuro tell us that he didn't have a clue what I had but I would keep getting worse...
If he didn't know what I had then how could he know I would keep getting worse? I really think you should never go back to that doctor and move forward... Don't let them tell you that your crazy and tell your story every time you walk in the office...
Tell it so often that the doctor will be able to tell it before you can... lol... Sometimes making a doctor hear you takes a while...You get to the point where you really want to beat it into them... Please take care of yourself and keep us updated...
I'll be praying,
It is really premature to jump to PPMS unless it has taken years for a diagnosis. PPMS is subtle I have heard is said first you notice you can't run as well as you used to, then months later you can't walk as fast. It usually attacks the spine. You do not have real attacks so it is much harder to diagnose. In my case I had it 44 years and it was so subtle I did not know I had a problem my PCP noticed it.
It is important to let Doctors figure it out. It is complicated and you can worry needlessly trying to diagnose over the internet. Many find they do not have MS at all. There are over 33 mimics and hundreds of Neurological disorders.
It is frustrating but important to work with Doctors. Sometimes they follow you over six moth intervals to see changes. I did not understand this and thought they wer not taking thinks seriously, But it takes time to see neurological differences.
I had tons of blood work 5 MRIs, Vep, emg, Baer, Neuro Opthamalogist exam and an eeg and a LP. All positive for MS. Tons to blood work.ruling out Lupus, HIV, vitamin deficency and the like. I saw 6 Neurologists over two years.
Finally I was diagnosed when all other possibilities were dismissed.
No to cases of MS are the same. Unlike fortwhat2. Mine which is 46 years old has pain and disabilty because it is in my spine. That said I am still very active. I hike and ride horses.I still walk on my own speed.
It is best to live in the moment and not jump to conclusuions. All MS is different.
Can you refer me to a website that discusses spinal lesions. I have three and my MS is mild. Just newly diagnosed and only one attack. Does this mean that I could likely cross over into PPMS sooner than later because of spinal lesions?
Also, I have never heard that Aspartame can affect MS. Is there any reference to this on the forum?
Sorry to ask these questions on your thread Dagun, I am learning some new stuff. Lol There is so much info out there! Just when I think I have heard what I need to know now, I learn more.
Thank you Alex and Carol so much for caring, telling your story and helping me deciding what to do, you are so kind all of you here. It is so nice to be able to talk to peoble with experiens like you all (sorry for my English).
Even though my neuro is old (nearly 80) not using computer, and maby then hi is not able to follow about MS in other countries and new developing all around. He is well known here in Iceland for his work with MS peoble, so I think I will be patience for a litle longer, he even said I could call him at home if I get another bad symptom! He says he brings his work home with him, and would think of me and my symptoms, so he is ofcourse just very nice :).
But maby there are not so many PPMS peoble here, that he has not realised that it does not always seem as clear as he thinks. And ofcourse I don't want to have PPMS or other MS, nobody want's it....but I still want to know what is wrong with me, I just want a diagnosis so it can be fixed if possible.
He has been sorting out all kinds of neuro related things, but nothing fits. He even told me to keep on looking on the internet (mabe because he dosen't use it ;)). But I am going to go to my regular doctor, tell her about everything and let her figure out if it is a reason to look into cancer in these places, my neuro said that could trigure (wrong spelling, I now :)) the neuro system.
Thank you all so much!
PS. Jeny, it is ok by me :), I am also learning. If you search Aspartam MS on the google, you will get all kind's of info. I just think it is better to start avoiding Aspartam in stead of taking the change, because it might be right what they are saying.
I do have numbness and tingling... especially in the bottoms of my feet, ulnar nerves and sometimes my lips... I also have pain... my neuro just gave me a TENS unit for the rib discomfort. Good Luck
Thank you for telling me, it helps me so much in understanding this all. Hope you feel better.
The Aspatam theory has been ruled false. Many Neurologist in the States do not understand PPMS
Spinal lesions do not always mean you have PPMS. Also people do not cross over to PPMS. Primary means you start with this kind of MS. It is very subtle and usually you do not have true attacks, exacerbations, or relapses. Your symptoms are there to stay. I really do not notice things changing it is that subtle. I look back over time and see changes. My symptoms just add up over time. Usually but not always it is discovered in later when people are in there middle forties or later. It takes a while after diagnosis of MS to be diagnosed because Neurologist look to see how your MS behaves.
I had no doubt I had PPMS from the beginning because mine was so subtle I did not even go to the Doctor with complaints, it was my PCP who said I had a bad Neurological problem. RRMS just did not fit.
I, like Alex, didn't have "true attacks, exacerbations, or relapses" I never imagine I had MS because I was only aware of RRMS. There is no medication therefore the Dr's just try to treat the symptoms as best they can. Each day is a new adventure and you learn to make each day the best it can be. I kept falling, thought I was a klutz and thought the memory issues, etc were menopause... boy was I suprised! Have a good day! :)
Thank you all from the bottom of my heart for beeing so kind :). I have learned so much after I found this group, everything you told me here and then reading what others ask, like "do you feel worse day or night" and much more. Now I have had my first muscle "cramp/twich" or something painful like that, to wake my up :-/ last night. Not so nice! But all of you, keep on going like you have been, active in this group and positiv when you possible can. Have a wonderful day!
My best to all of you,