I wasn't posted for a while; but pain i leave in and all the tests I go through don't leave me much time to enjoy of communicating with you.
I would like to ask you: what is the difference between regular Neurologist and MS specialist? Isn't MS Dr is also Neurologist? My Neurologist takes care of MS patients too... Who are you all using?
I am in same "puzzled" stage. Now my PM Doc wants me to have spinal tab done. But due to my 2 spinal fusions Neurologist suggests that spinal fluid will be unclear, controversial and "no good". So what is the reason for me to go and risk my spine again? Or maybe I have to do it anyway despite the above concerns?
I see how rocky is the road to be diagnosed with MS and now I understand why it takes such long time to be diagnosed.
MY Rheumotologist told me that about 40% of MS diagnoses is not accurate. He said that in his RA magazines they have so many articles every year about this mysterious disease when so many people are diagnosed with MS actually never had it and they suffer after all with some other conditions.
This scares me so much! I don't want to take meds I don't need or to be misdiagnosed with MS while I may have some other problems...
Where is the answers?? So confused and so uncertain...
Hi there Moldova...good to hear from you!
You asked what is the difference between an MS doc and a regular Neuro...there is a differnce, and YES, a MS doc is a Neurologist- however, he or she has had additional Special training in Multiple Sclerosis....an MS doc is qualified to both rule out or diagnos MS- and thats basically all they do.
A good Neuro, who has a large practice of MS patients is worth his weight in gold to us- and I use both- a regular Neuro and an MS Specialist...HOWEVER, what I get from the MS specialist which I NEVER get from the regular Neuro is the latest updates, the latest breakthroughs and most importantly someone who has seen it all, heard it all and knows it all when it comes to MS.
My regular Neuro has many MS patients, and I consider him one of the good guys...but, again, when I needed surgery back in January, and my GYN was stressed about both anesthesia and taking me off the birthcontrol pills, it was my MS SPecialist who was able to talk to my gyn and answer his questions....it was the MS Doc who was able to answer MY questions about what was going on with my body and whether or not it was MS related or just another medical issue..
There is a guy in New Brunswick- Robert Wood who is one of the most reknowned MS Specialists on the East Coast...his name is
Dr. Suhayl Dhib-Jalbut, they call him Dr. Jalbut...I use him as do many others in our area and I would highly recommend you give him a call and get a consult with him. He can answer all of your questions and will talk to you about the necessity of spinal taps, etc...he is also the chair of adult MS and Neurology, in his same office are other specialists who will give their opinon/insight to your past surgeries and what can/should be done in your special case....
Taking meds is scary...Ive often wondered if I am taking Rebif unnecessarily or what...I dont think I am, in fact, I have NO REASON to think I am- but deep down, especially when this disease is not active, and we feel good- I guess I keep hoping to find out that they were wrong...in my case, they cant be- its highly unlikely- I have over 50 lesions on my brain and all the symtoms of MS....but I do understand. I really do.
Get another opinon, it will make you feel better...
you are like an Angel for me today. I was crying many times last night and all day today: I am in so much pain and nothing helps and no way to find out what is the problem: seems like every DR is puzzled and no 100% someone can tell me that this is MS or not. I have so many other paiful issues because of my failed spinal fusions and as a result of surgery - Arachnoidities so I don't mind to take meds if I really need them. I know that MS pills are very strong and a lots of side effects may occure and I want to take them only if I know for sure I have it...
But how to know if I have every severe symptom of MS, but MRI did not show leasions? No thorasic or cervical either... How do I know?
Please, don't mine me and thank you for your time, but would you consider the following as signs of MS?
1/2 right side of my face is numb; legs, feet, arms and hands - numbness, pins and needles.
A lots of nerve pain all over.
Loss of balance.
Severe Vertigo: on and off since '06.
Optic Neurities with blurry and double vision.
Weakness of legs and arms.
Problem swallowing and horse voice.
Thinking or processing information problems (this is so not me)
A lots of pain in muscles; such bad stiffness
Tremors in right leg and right arm.
Bowel and Bladder issues.
Sensetivity to heat (hot weather makes me feel of passing out, throwing up).
Exhausting, not tired, but exhausting
thank you so much for your respond... Yes ON was confirmed...
I agree with you; and that is why I am so devasted. I don't want to take pills if I don't have it, but how in a world would I know if good Drs are puzzled. I would honestly don't care much if it would be just dx, but I can't leave in so much pain anymore, I really suffer and nobody can find the reason except the spinal problems.
But my PM DR feels something else is going on, but what???
Moldova..your NOT alone, ok?? Please know that..we are here to vent to and to "talk' to whenever you need us..
now, as for what Cherie said "that these symtoms could come from the Arachnoidities alone" I cant comment. I dont know much about Arachnoidities- but I will research it to see how it might be true....
Meanwhile, the symtoms which you list- HECK YEAH that could be MS...but lets not forget, many things present like MS..
I have : numb tingling fingers and hand ALL THE TIME- I have dizziness and balance issues MOST of the time. My cog fog (what you described) is increasing all the time -but it comes and goes..and I am an educated individual who SHOULDNT be feeling like this, but am! verigo-yes, ON, three times, muscle spasms, randomly, heat sensitivity ALL THE TIME and most of all, fatigue! SO, there you have it, we have very classic symtoms which are very typical of MS...but then again, I still have to look up Arachnoidities!
The one thing I did want to comment on was you used the term MS PILLS..there are no pills for MS..there are a few meds on the market which are given as shots- I do Rebif, which is a 3 time a week injection..others do Avonex, a one time a week..some people do Betaseron, which is every other day..and yet others do Copaxone, which is every day. Each shot is similar in many ways, and the one thing they all have in common is that they are only supposed to decrease progression and new lesions...by not getting new lesions, you dont get new symtoms! Unfortunately, they do not help the existing symtoms which are already there....there are of course, muscle relaxers for the muscle spasms, Steroids for the optical Neuritis or other inflamation..axiety drugs which help the panic, nerve pain drugs which help some people (but not me) for the nerve pain..and a host of other things which can be prescribed for the symptoms...you could be on them WITH or WITHOUT MS. So, those are worth trying if you are really uncomfortable.
Until you start any of the MS Drugs (known as MS therapy drugs or DMDs-disease modifying drugs) theres really no reason to panic here...nothing else you could be given is strictly MS related...but if you are concerned about progression or if you think things have gotten worse, starting an MS drug might be the right choice for you..thats something you have to discuss with your neuro or MS doc...
I still think you need to see an MS doc for a second opinion and to allieviate any fears you have...im here for you- not too far away in fact- check out the doc I told you about- I think youll get the answers you need...
first of all: I found this Dr's e-mail address and sent him an e-mail about my situation and I want to see what he will suggest to me. If he agrees to see me I definatelly make an app with him.
Thank you for your advice, I was looking for someone in our area who specializes in MS, so your help is greatly appreciated.
I am ashamed about my unknowledge regarding MS treatments so please, forgive me.
Arachnoidities is a severe scarring of spinal cord and nerves which is not curable or treatable and causing severe pain. Affects spinal cord, legs, feet, arms, etc.
Hi Moldova....im sorry for being ignorant to Arachnoidities, I am doing my researdh though (for you!) I actually do know of one other poster who has either the same or similar problem- we'll have to see if she comes onboard to offer anything on this...my belief is that she has both Arachnoidities and MS....
As for the doctor, Im not entirely sure if he reads or even checks his emails..ive never sent one to him and from my experience, most or many DO NOT check them...but if you found him, then you FOUND HIM! You can always call his office and speak to his nurse..her name is Yaritza...and she is a certified MS nurse besides being an RN (and one of the nicest people Ive ever met)- if anyone can offer an opinion, or get you in- shes the one! Because it is a large university hospital, you would have to wait otherwise....my first appt was over 2 hours long- he gave me the most intense Neuro Physical that Ive ever had..and then and there, I booked my appt to come back in 6 months,- just so Id have it on the books....meanwhile, I do see my regular Neuro. I trust him to monitor my Rebif and order my MRIs...but I schedule my appt with Jalbut so that I have the newest MRIs and tests to show him when I go...
Hope that helps...there are other good MS docs in the area- but honestly, I like this one the best. (as far as his credentials and reputation)...let me know if RWJ is too far away and Ill send you the names of others.
Do you have an idea whether ON can be connected to Arachnoidities too? I've never researched that.
How did they dx the Arachnoidities, with a MRI of the spine? Is it possible they were wrong with that dx, and the damage was due to spinal lesions?
There are not many diseases that cause spinal lesions (lesions just means "damage"), and that's the reason they suspect MS when they see them. I've known a handful of people who they thought had MS originally, and it turned out to be Arachnoidities. I guess this means that the damage (lesions) in the spine must resemble MS a lot.
As far as symptoms, most of my MS damage is in my spine too, and I have very few brain lesions. I get most of the symptoms you mentioned . . . and since know they aren't caused by damage to the brain, they must be as a result of the lesions in the spine. This is true even of the cog-fog, fatigue, etc., which to me, don't "seem" like they'd be related to spinal damage (but are).
The ON is the one thing that has me stumped though.
Hey moldova, since you asked...overall Im doing very well. I have had MS for 2 years this september...it started out with my hand tingling and numb..and then I started having vision problems...that led to my very quick DX and of course a round of steroids...followed immediately by starting on Rebif. Ive been lucky- Rebif has been good to me..no real problems with side effects, my body got used to it quickly..and Ive had 4 MRIs since my dx, and nothing has changed, which as you probably know, no news is GOOD news with MS.
So as far as my 'problems' they are minor in the grand scheme of things..i have balance issues and definate heat sensitivity..this weather weve been having is making me nuts..my cog fog comes and goes- but it is heightened (worsened) by the heat and by stress....my job is my major stressor, and right now, my husband, too. Things arent good for me at home and Im in constant termoil over what is going to happen to me (us)...the job is just simply TOO much for me..im in sales, and drive 200+ miles a day..covering 9 counties from Atlantic to Hunterdon..im all over the place..and in between seeing over 500 docs/nurses a week- its KILLING ME. My biggest complaint is constant hurting/burning in my fingers/hand..that, and the occasional muscle spasms in my legs..those are worsened by driving so much...I also have a complaint of eye pain..even though Ive recently been told that I dont have ON- I have had it 3 times so far, and each time it has left me with pain in my right eye. THe other thing I deal with is bladder issues..im always having to go- not easy when youre in the car stuck on the parkway! But for the most part, I do handle it...im just out of my mind with stress these days and its making everything hurt and feel worse than it is....
You asked! Thank you for asking..and we must live very close for him to be 20 minutes from you- hes about 35 minutes from me! Fortunately, I cover RWJ and St peters in NewBrunswick, so im in the area often enough!
Keep in touch and let me know how you are...and if you hear from the doc or from his nurse....the MS society in NJ (monmouth) is always doing lectures where this doctor speaks, keep your eyes open for seeing him "live" because he takes time to answer questions afterwards!
I feel for you, girl! I can't even imagine to go through my ordeal without my hubby's and family support. It must be so hard on you to handle your stressfull job, missunderstanding husband and health issues you have.
This all adds even more stress to your life and pain too. I strongly believe in mind-body healing and if you are not happy - how can you heal??
I am so sorry you are having so many problems; not easy to leave with all this. And thanks to you for all info you gave me. I definitely want to meet him. I still have one app with my excellent Neurologist at HSS (he also has his office on Lexington Ave). I see him when my surgeon from HSS sends me to him for the nerve damages I have and Arachnoidities. When I saw him last time I did not know about MS. Yesterday I sent him by fax a letter saying about my new ordeal with MS, ON and today he calls me and tells me that he wants me to come and discuss everything I had in my letter. He is just unbelivable! Excellent reputation too.
After I collect all my records I am going to see the DR you recommended; I read his record and I am impress. Never hurts to know more before you make such serious decisions like meds and spinal tab (in my situation it can be very dangerous due to infections on prevous operated spine).
I will keep you posted; to me sounds like we are really neighbors - so funny that we met each other on board...
Moldova, best wishes to YOU, too. Ive been thinking about you alot....please do follow up with your doc and get copies of whatever you can...I think you'll do well to consult with Dr. Jalbut, but I will warn you upfront, he isnt warm and fuzzy...hes very professional and slightly chilly- however his reputation speaks for itself and he is a miracle doctor!
Please keep me posted..
and hugs to you..
My first surgeon was nice and fuzzy and failed me so badly... I learned with all my problems that I go to the professional, GOOD DR to be helped not to make friends...
My second surgeon opens the door for you when he is done talking (yes!!!) but he is an excellent surgeon and has world known reputation...
Can't be 100% all we want; if they know what they are doing - I am happy.