12-07-2009, 05:28 PM
Join Date: Sep 2009
Is ms very complex ?
I am not diagnosed with MS, I have had alot of tests but nothing conclusive. From what I understand MS can mimmic other diseases and vice versa. However I am not getting any better, and so this leads to yet more frustration, not because I need a name, but a diagnosis would help when it comes to maybe getting treatment. It wouldn't change whats happenning but it would help.
I also understand whilst there are symptoms that are pretty much consistant with MS, different people do have different symptoms to.
Is it considered an inflammatory disease?. I have definate symptoms and not to good at explaining them but they are more consistant now as time has gone on.
It has been just over a year since I saw a neurologist. The door was closed on me due to the fact that no one could identify what was wrong with me. I didn't quite fit the MS criteria or anything else for that matter. I did have some positive tests but this wasn't enough to diagnose a specific diagnosis. I can understand that. After all, if a diagnosis is to be made eventually I want them to get it right.
I am SO tired though, there are times when I can hardly function. The tiredness is extreme. My friends and family have commented lately on just how drawn, pale and ill I look. I see it myself and wonder what on earth is going on. I am getting foot cramps now, not something I had before. I get nerve pain, at least my GP says its nerve pain. I get areas on my body that are hypersensitve to touch, eg; on my legs and on my head. Today the dizzyness was awful, I found it difficult to focus as the ground seemed to moving beneath me. My body is drained of any tiny amount of energy I have. I feel each day is becoming a marathon. I can walk, but I am tired out very quickly and often feel I am on the point of collapse. I get nausea, I can cope with it, but its like a burning sensation. I get cluster headaches and nothing will help them at the moment. My neck is stiff, my arms ache, the upper muscles in my arms, using the hairdryer feels like I am trying to weight lift.
Doesn't that sound pathetic!. I have to be careful when i wake in the morning because if I stretch like any normal person would the pain in my legs and arms is terrible. I have to stretch gently and almost do a warm up before getting out of bed.
I did test positive when I had a lumbar puncture, they found O Bands in the CSF, but with only one brain lesion it wasn't conclusive.
I have a tremor, not all the time, and when walking does become difficult, I tend to shuffle, so I can negotiate the path ahead. My blood pressure is very low, and it takes me longer these days to assimulate information, or I can't remember.
The other day when I was out shopping, I felt very unwell, very weak, cotton wool in my head, but I had to get groceries. I somehow ended up down an aisle knocking over every jar of mint sauce that was on display. I really don't know how it happened and was stunned when it did.
Does MS produce memory problems, is it painfull?. Do you feel weak and tired?
Sometimes I can't even get my words out, its like I know what I want to say but I can't get it out. Very frustrating. I get muscle spasms but they happen more when I am tired, nothing much to worry bout there.
I no some people with MS have a problem with grip, my grip is fine, not as strong as it used to be and I do get pain in my hands, but I can grip. My feet are fine, I just get cramps. My posture isnt good but like us all I am getting older. Just don;t like the electric shock feeling I get at times from my neck down.
Do you feel ILL with MS? Please excuse me if that sounds like a really stupid question, but does it?. Or is it more a physical thing?
My GP has had me on and off steroids this last year, as its the only thing that seems to help bring me back up a little, although the last two doses didn't do very much.
I have never been a lazy person and I do actually enjoy life. I enjoy every good day for what it is. I do get payback if I do to much, but I refuse to stop, that would be a total cop out and its just not me.
I am hoping very soon to get some help, maybe you guys can help me, point me in the right direction, advise me.
Sorry for the long winded post, but thatnks for reading.
12-07-2009, 05:51 PM
Join Date: Sep 2006
Re: Is ms very complex ?
Wow. Thats quite a post. First of all, Im sorry you are going thru such a rough period....you ask allot of good questions and im not entirely certain that you wont get a different answer from each one of us- but here goes:
No, MS is NOT an inflammatory disease. its a disease of the auto-immune system, which attacks the central nervous system, which is the brain, spine and eyes. It is only diagnosed by ruling out everything else, because as you said, LOTS of things mimic MS.
lymes disease, certain infections and even Lupus can present like MS.
Most of the things that you describe happening to you are not sounding very neurological in nature, and I wonder if Lyme could be a cause? You can read more on Lymes here on healthboards Lyme board.
However, where to start? Youll need to see a good Neuro. Have MRIs of the spine and brain again.....with and without contrast. MRIs can change month to month- so if its been more then 6 months, you are due to be looked at again. Lesions, can come from brain trauma, infection, migranes and other things...but MS Lesions are specific to size and shape and placement in the body...a good Neuro can tell if they are MS related. The fact that you had Obands doesnt surprise me, but all that means is that autoimmune disease is or has been present...its not conclusive for MS. Another thing that should be tested again is your blood work- for vitamin deficiencies...especially B vitamin, can cause significant fatigue and body aches and muscle cramping.
Some of the things you wrote are not specific to the disease, grip problems, cognitive problems, memory problems and nausea or cramping- yes, some MSers have some of these issues, but they are not specific to MS. You can have these issues and not have MS, and you can have MS and not have these issues.
I have MS, my issues are fatigue, numbness, which is caused by permanent nerve damage in my brain area and affects my hands and fingers on one hand. I also have some gait problems, more affected when Im tired. I Work 50+ hours a week and go to school for my doctorate, so its not obviously affecting my day to day ability to be 'me". I do not have naseau or stomache problems, I do not get leg cramps or muscle stiffness......but, as stated before, MS is very individualized. I know people who get some of those symtoms who DO have MS.
Unfortunately, youre going to have to go thru the testing. There is no other way to figure this out. It can be a long lengthy process, or in the case of myself- took under 2 weeks. Until you start the testing with a good Neuro, or MS specialist, there is no telling....
but I wish you well and hope you start to feel better soon. Investigate other possiblities by seeing the Neuro first, letting him order the tests and then asking where to go next. A Rheumy (if its lyme) or a Lupus specialist might be advisable...your doctor will know which way to point you.
Best to you..
RRMS- dx 05
12-07-2009, 05:56 PM
Join Date: Sep 2007
Location: Kansas, USA
Re: Is ms very complex ?
Is MS complex? I believe it is. It is an autoimmune disease. Considering the actual size of the neurons which are affected, I would say it is indeed complex. Consider the fact that there is no single test for a diagnosis. After 700+ years, the cure remains elusive as well as the trigger that starts it. Yes, it is complex.
I posted this list of symptoms in another thread, but I pasted it here for you. The symptoms are in no particular order. Your local MS Society should have reading material to delve into the symptoms separately and in greater detail.
Knowing what you are battling is a victory in my opinion. The unknown, for me, was the most distressing. I hope you can get your situation figured out soon.
Below are some symptoms I have learned about. I have experienced most of these main categories, though no uncontrolled crying or laughter or some other "sub-categories". I have experienced all of the rare symptoms except for hearing loss. I hope this helps
The most common symptoms of MS (I think I listed most of them here):
3.Walking (gait, balance, and/or coordination problems -I include leg dragging and foot drop here.)
6.Vision Problems (Optic Neuritis, Double Vision, problems controlling eye movements)
7.Dizziness and Vertigo
9.Pain (such as Trigeminal neuralgia, Lhermitte’s sign, Burning, aching or “girdling” around the body- MS hug)
12.Emotional Changes (Depression, Grieving, Stress-low tolerance for stress, Anxiety, Distress, Uncontrollable Crying or Laughing,….)
Other Symptoms- though rarer:
20.Respiration / Breathing Problems (Can be an initial symptom) –This would include swallowing/aspiration issues too.
The symptoms do not necessarily affect every MSer. Some may only have 2-3 symptoms. Also the affects will vary from person to person. My first symptom I can remember was foot drop. You might only experience or notice one symptom which leads to a diagnosis. I think much of what you wrote is MS like. Yes there is pain, and fatigue is probably one of the most common symptoms. I will keep you in my prayers from "this side of the pond". I hope you keep coming here because you never need to feel alone in your journey.
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
12-07-2009, 08:00 PM
Join Date: Sep 2009
Re: Is ms very complex ?
Thank you Nikki and thank you MSJayhawk for your reply.
The information you gave me was interesting and very helpfull. It is indeed a very frustrating time, but I do realise these things can take time. At least I keep reminding myself they do and am ever optimistic that very soon I will get some answers.
I have been tested for Lymes and Lupus and that was ruled out, so thats two off the list for now. Its very easy to read about illnesses and self diagnose, in the hopes of finding an answer. I think you just have to be honest about what effects you and what symptoms occur. I do have quite a number of the symptoms you listed and some not at all. I don't have foot drop, or optic neuritis, although do get visionary problems ie: double vision. I don't get uncontrollable crying or laughter.
I go to the pain clinic here and they have been very helpfull. I have pain in my lower back and so they suggested accupuncture to help. I had quite a few sesions but it remained the same. My pain radiates around so even though its in my lower back I get it in other areas aswel. So I now have a tens machine and that does help, its not a cure, but it helps at the time. Today they suggested CBT (Cognitive Behavioural Therapy). I don't sleep well and they said this may help along with other things.
I have respitory problems, had my lungs checked, thats all fine. They reckon its my muscles. I feel at times I cannot get enough air into my lungs.
Anyway, I won't go on anymore, your replies have been very helpful and much appreciated.
I hope its not MS, I hope its nothing, but that would be wishfull thinking. There is definatly something wrong, but it could also be something very simple, who knows!
As I said before Its easy to self diagnose and I am not here to do that. But its good to vent and ask questions, get feed back from you guys. MS is on my mind otherwise I wouldn't of posted. I shall sit back now and wait to see what happens, speak to the neuro and take it from there.
If I get answers I should like to come back and maybe share them with you. Thankyou once again.................Take care.
12-09-2009, 11:53 AM
Join Date: Apr 2009
Re: Is ms very complex ?
hi there. First must say please excuse typos as in major fog brain.
Just a few comments if I may..
I was dx wit Lupus in 1998. I was recent dx with MS. Right now my specialists believe I truly have both but these two diseases do very much mimic eachother.
Like MS there is NO one test to rule in or out Lupus. On average it takes 7 years for a lupus dx because many symptoms can be many other diseases or condtions.
Exactly how did they rule OUT lupus? Pain, severe fatigue, brain fog, dizziness, joint/muscle pains, all can be lupus.
I assume your ANA must been normal but please keep in mind some people have lupus and a normal ANA...most of us have elevated levels but not all...
In my case its my very high ANA that stops them from converting my Lupus DX to a MS only DX.
MS was DX after vision issues and increasing nerve pain/damage. MRI scans confirmed lesions in brain and spine. I go for more scans in Feb to see if any more have popped up.
Stay strong and be your own best advocate. Keep a journal of symptoms/feelings..and definately seek out Neurologist that deal with a lot of MS patients.
And I wouldn't completely rule out Lupus yet either...
Lyme disease and hypothyroid should also ruled out.
Wishing you peace,
12-09-2009, 05:31 PM
Join Date: Sep 2009
Re: Is ms very complex ?
Silentwarrior, Thankyou to for your reply. All the feedback and info helps. I saw a guy privately in London for Lupus. He carried out the full battery of tests which all came normal, apart from the schrimmers test, that was positive. I then had another Lupus test done by my own neurologist and it came back borderline. He said it was nothing and we left it at that.
At the moment I am getting terrible headaches constantly, my neck is stiff and my muscles hurt. I have a brain fog that just will not go away and at times everything seems very sureal.
Its frustrating to say the least, and im not just tired I am completly washed out. I could not sleep the other night, my right leg was burning up to my hip and my right hand was throbbing, it was pounding with pain.
As I said previously, I guess I have to sit back and see what the neuro says. He isnt a very nice man, I saw hm a year ago and he wouldnt budge from the idea that it was all in my head. However my GP is now quite concerned at my decline in health and has requested he sees me again. So I will just have to see what he says. Thankyou once again, take care..........
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