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Old 11-14-2012, 06:40 AM   #1
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Initial MS Diagnosis/MRI question

I am 62 and 2 months ago I began to have MS symptoms: tingling in legs from the knees down. By the time I saw a neuro the tingling began in my arms from the elbows down. Dr. was careful not to diagnose MS but felt that was probably my problem. I have little sensation in my feet. Right after my nero appt. I went downhill so fast it scared me. Numbness in my face and lips, fatigue, aversion to heat, much weakness in my legs and most recently blurry vision. I had/have to wait 6 weeks for my second appt. (which will be in 2 weeks). I called my Dr. at least 3 times during those episodes and could not get someone to call me back. Finally I got a call but they could not find an opening for me before my appt. Waiting 6 weeks is ridiculous! I feel as though I have lost ground in not being able to see the dr sooner. However, I have had MRI's of my brain and cervical area, all negative. There was one small lesion in the brain which the MRI study dr. thought was inconsequential. My blood tests, so far, have ruled out lupus, sjogren's disease and Lyme. ( am not medically trained but I could read the results of these tests easily) I am also keeping careful tract of my symptoms.

I went to my GP but he was reluctant to give me a steroid treatment before my neruo appt. since my tests so far are all negative.

Question is: The neuro dr.wants to do an EMG (been there; done that...hateful things!) and a possible spinal tap. I need to know how an EMG or spinal tap are going to help diagnose MS, and if they do, will this be the final puzzle piece. I am especially against having a spinal tap. Please, I know I am at the very beginning of a dx, but I want to know what test helped others to get their dx. Is an EMG necessary? Is a spinal tap necessary?

 
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Old 11-14-2012, 06:58 AM   #2
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Re: Initial MS Diagnosis/MRI question

Welcome.

Is your neurologist and MS Specialist?

The EMG and LP are just two tests. Until you have eliminated all possible causes for your condition, a definitive diagnosis for MS is impossible. Blood tests can rule out many mimicries, but the "pile" of possible causes still needs to be eliminated. Along with the EMG a VEP (visual evoked potential) is also good. The LP is NOT a specific test for MS and while it is not a required test, it can find specific mimicries.

For MSers who have had an LP, 15% have normal (negative) results. 15% is a large percent; were it 100%, then we would be on track for a specific test.

MS is diagnosed based upon a process of elimination. It can be time consuming and patience can wear thin. Stay strong!
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Old 11-14-2012, 07:15 AM   #3
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Re: Initial MS Diagnosis/MRI question

Thanks, Jayhawk. I appreciate your reply. I am just concerned that it will take another 6 weeks for another test, then another 6 weeks to get the results and so on and so on. My neuro is not a specialist but says he has diagnosed people in their 60's before and that, if I have MS, I've probably have had it for a long time and it is just now manifesting. I can look back and see where I had certain symptoms but dismissed them as "getting old". I had foot drop and EMG and MRI back in 2000 but tests came back "inconclusive". It went away. About 6-7 months ago, I had allodynia (feels like the third day of a very bad sunburn) on my back and down my arm. It went away and I didn't do anything about it. I'm not the type to run to a dr. for a runny nose. The numbness in my feet I thought was just a result of bad circulation since I couldn't feel it after I was awake and walking around. As I write this, my eyes are blurry for the 5th day...and still I have to wait until the 21st for my drs. appt.

Would it be unethical to make an appt.with a specialist while I'm waiting for my 21st appt. You know how long it takes to get an appt. with any specialist! Or should I just wait on my neuro and see what he says about my recent (negative) tests? I guess I am just thinking out loud but would appreciate your reply. I visited my GP yesterday and asked for a steroid to get me through to my appt. (plus I am going away for the weekend and wanted something to stem the blurriness and weak legs). But because all of my tests so far are negative, he was reluctant. I understood that my neuro must be the one giving me meds. However, he did give me a script for Ambien and offered to call my neuro and talk with him about my rapid progression. I appreciated that he is advocating for me. Perhaps I will nothave to wait 6 weeks between appts. next time.

Sorry, I guess I am really ragging,but I have no one else to talk to about this who won't get upset listening. We mothers keep all the bad news to ourselves so that no one else gets hurt/upset. Thanks for listening.

 
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Old 11-14-2012, 07:32 AM   #4
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Re: Initial MS Diagnosis/MRI question

The appointment wait to see an MS Specialist can be quite long. If your neuro has worked or is working with MSers, then you will probably be OK. You could ask for him to consult with an MS Specialist or in the absence of a definitive diagnosis, ask for a referral. My neuro sees me every 6 months, but she will find time for me if an emergency arises. Your wait time could be 4-6 months, but a referral could get you in earlier.

You might very well have had MS for years without knowing. I met an older lady who had MS for at least 35 years before she finally took the time to see an MS Specialist. She told me she had been too busy as a mother and her symptoms were always treated as something else or simply dismissed. This is not a rare case because many MSers will easily dismiss symptoms which go away without any noticeable damage. I know I ignored my symptoms for 5 years.

Patience is a major asset to have. Limbo land can feel lonely, but you are not alone. Most MSers have had a long arduous journey through limbo land. I think you are doing everything correct and believe it or not, you are probably quite close to an answer. Some doctors are reluctant to give a definitive diagnosis because it is "bad news". Their reluctance can cause stress and anxiety which can worsen an MSer's symptoms. Hopefully your doctor will be more forthright and provide you with a concise answer.
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Last edited by MSJayhawk; 11-14-2012 at 07:33 AM. Reason: typo

 
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Old 11-14-2012, 09:17 AM   #5
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Re: Initial MS Diagnosis/MRI question

Thanks, again. I am already resigned to an MS dx. My brother was recently dx'ed with ALS, so an MS dx is really a relief in a way. At my first appts. neither my GP or neuro thought I had ALS based on my symptoms. I have a strong faith and believe that God will show me something good from all of this, perhaps being able to encourage my brother who is sliding downhill and others with MS (my sister-in-law has had MS for 20 yrs but doesn't discuss it) much like you have done for me. I hope you won't mind; two questions: is it okay to have caffeine? I've read various replies to that. I enjoy a cup of coffee and/or tea everyday. Also, now that I am "sick", I feel the need to get more exercise than I have (oops, none!) Will over-doing it exaserbate my symptoms? In the back of my mind I am thinking that one day I may not be walking and thought that keeping my muscles strong would be a help. You've been a big help and I will take all your recommendations to heart. I do hope that you are feeling well today. Know that I will be praying for you.

 
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Old 11-14-2012, 10:07 AM   #6
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Re: Initial MS Diagnosis/MRI question

ALS is one test which is specific and is eliminated early in the diagnostic process.

Caffeine, if it triggers a symptom, would not be good. I drink diet Dr. Pepper for one of my MS headaches. It only works for a very specific area of pain and has been 100% effective for me. I tried different caffeine drinks, and for me, they did not work as well.

I have dark chocolate which I consume for yet another area of head pain. Again, this has been 100% effective and only works for specific pain.

Exercise is important as long as it is low impact and in moderation. Aquatic exercise, yoga tai-chi, and modified Pilates are all good choices as is walking. You should also incorporate plenty of stretching. The stretching is a daily regiment 2-3 times if needed (or more). The stretching helps with muscle memory. Should you ever need to use a power chair, you still need to stretch to prevent atrophy. Gardening, yard work, household chores....all these should be factored into your need for exercise.

Moderation is important because when you over do physical exercise/activities, you can cause problems or cause symptoms to present. Also, for me, if I push past a redline it requires a longer period of recovery. During the recovery, keep stretching! Your own sense of moderation can vary. You learn where or what your redline is. My neuro put me on a passive exercise bike. On some days 45 minutes is fine but on other days 10 minutes is all I can do. I watch for the slight signs that my redline is near and I stop before I get there.

If you keep a journal of your symptoms, you might discover what your MS triggers are. The majority of triggers for me are avoidable. If I avoid the trigger, I have a better day. There are also triggers such as seasonal triggers which I cannot avoid unless I win the lottery and can fly south to avoid them!

After 35 years, I can say that there are more good days than bad. Also, re-setting your benchmark as to what "normal" is to you is important. I live with MS problems 24/7, but my own sense of normal keeps me balanced. I do not grieve that which I can no longer do. Sometimes you can make modifications with adaptive equipment or you can learn a new hobby. Do not grieve what you had, but do what you can. I look forward to shedding this broken, corruptible vessel some day.
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Old 11-14-2012, 02:07 PM   #7
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Re: Initial MS Diagnosis/MRI question

Dear Jayhawk, thank you yet again. I have learned more from your replies than any website I have traveled to. I will keep all that you said seriously in mind. I think that the best thing I can do is get rid of the caffeine and see how that effects me...or not. I'm sure I'll have withdrawal symptoms first...headaches and fatigue. I'll try herbal tea to try and fool my subconscience. And then someone will have to tie me down so that I don't go to WaWa for their coffee that I love.

As for stretching...what a fantastic hint! I have read that seniors should stretch to maintain flexibility and now I have even more reason to do it. Not that I'm much of a senior (denial). I was a cheerleader mumble, mumble years ago...and understand the importance of stretching before vigorous physical activity....at least those were the days when cheerleading was physically challenging and we woke up the next morning sore all over.

I understand your explanation of redlines and I guess I will have to begin to recognize mine. I have already seen that when I have good days and try to do as much house cleaning as possible then, I seem to pay for it the next day. I've always said that I have too much "Martha" in me and not enough "Mary". Things have to change.

Thanks again. I will reread your posts over and over for encouragement and good advice. Have a very happy Thanksgiving. May God bless you and your family.

 
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Old 11-14-2012, 02:34 PM   #8
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Re: Initial MS Diagnosis/MRI question

I would caution you on herbal teas because herbal extracts can have pharmaceutical effects. When I lived in Asia, herbal teas were often used for various treatments. Herbs and supplements should all be noted in the information you give to your doctor. Green tea should be fine. I would not worry too much about eliminating caffeine and if you have an LP, you will benefit from caffeine.

I do not think your old cheer leading routines would be the right exercise but I think you understand the right direction to take. I started stretching because of muscle cramps, later my neuro told me to stick with it because of the beneficial effect it has on muscle memory.

I would love to workout in the pool, but we do not have one near my house. My main exercise is walking with my service dogs, my passive exercycle, stretching, and gardening/lawn work. For hand exercises, I still have my crochet needles at the ready. My rehab nurse told me Legos were good and we have many Lego sets to play with here.

Think about different things you can do for various scenarios. When I was stuck in my power chair I stretched, played Legos with my youngest, hunted and fished as well as gardened. Always have a "playbook" plan available and you cannot go wrong and never "beat yourself up" when you are unable to do something- be flexible and count your daily blessings. When I was bedridden due to MS seizures, I could still count my blessings and I could still do things and I still had my daily goals.
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Old 11-20-2012, 03:31 PM   #9
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Re: Initial MS Diagnosis/MRI question

Hi JayHawk,
Yuk, wrote a whole reply already and it disappeared! Didn't know I was a magician.
How are you? I wanted to get back to you to thank you for the information about the herbal supplements, exercise, etc. More good advice.
Tomorrow I have my second appt. with my neuro. I am not encouraged. To make a long story short, I heard from my GP who spoke to my neuro last week on my behalf and was told my neuro does not think I have MS because my MRI's were clear of lesions and did not know what was wrong. But he did not know that my symptoms, since my first appt., became so much worse. My question to you is, what is your opinion of clear MRI's and dxing of MS. I have read enough information to know that it's possible to have MS without lesions (at least at first) and I am concerned that my doctor didn't know this and won't consider the symptoms I am now having. I've had blurry, painful vision and very weak legs, so much so that the 4 day trip I took this past weekend left me riding in a wheelchair while the rest of my family rode bicycles on our visit to Williamsburg. I could walk but I could not keep up if I tried so I chose the chair. I took ibuprofen which helps the pain in my eyes and residual headache from that but I cannot take ibuprofen indefinetly. I guess I should have made that appt.with the specialist when I spoke of it before. I will have a complete list of my symptoms and how long they lasted for the neuro tomorrow, as well as my MRI disc and report. I am hoping these will help. Thanks for listening. I am glad you are there for all of us.

 
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Old 11-20-2012, 05:18 PM   #10
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Re: Initial MS Diagnosis/MRI question

I have read enough information to know that it's possible to have MS without lesions (at least at first) and I am concerned that my doctor didn't know this and won't consider the symptoms I am now having.

First of all, its not possible to get a MS diagnosis and not have lesions. If you want to know more about the criteria which MUST be present to get MS diagnosis, you should look up the revised McDonald criteria. This is what all doctors must use in order to dx MS.

Now, thats not to say that a few months from now, you wont have lesions show up on your MRI. Standard MS diagnostics require a MRI every months for up to two years before they can rule out MS entirely.

What isnt present now, could very well show up down the road....however, your symtoms mimic alot of things...MS presents like more than 300 other diseases- and ruling out all of them is how you get a concrete MS dx. Fortunately, many of them can be ruled out with simple blood work and very specific tests. So, your GP may very well be right. You need to see a MS specialist or a Neuro with alot of MS knowledge to get properly tested.

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Old 11-20-2012, 06:37 PM   #11
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Re: Initial MS Diagnosis/MRI question

As mentioned already, a clear MRI will prevent a definitive diagnosis for MS because it is an integral part of the Revised McDonald Criteria. If everything else points to MS, the neuro will have to wait until the guideline of at least 2 lesions is noted. Just because you might have a clear MRI does not eliminate MS. You should continue to be checked again in 2-6 months or if symptoms develop.

An MRI which is not read by someone with MS experience might miss some important evidence.
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Old 11-21-2012, 09:24 PM   #12
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Re: Initial MS Diagnosis/MRI question

Thanks, JayHawk. I saw my neruo for only the second time and was pretty discouraged. He did an EMG which he said I passed and I am now scheduled for a lumbar MRI looking at spondylosis and an evoked potential vision test, both this Monday. However, he seemed surprised that my eyes have been hurting and my vision slightly blurry. When I heard that, I asked him about the McDonald criteria and he sort of blew me off and said there were other ways to determine MS. He asked me about going to my eye doctor for a follow up for the pain in my eyes. Duh! We went over my MRI and took note of the one lesion that was there. It was not bright but it was was there. One McDonald criteria of the main three noted that one lesion plus two other symptoms that could be present (don't have my notes in front of me) could indicate MS. The dr. said a few times he does not believe I have MS based on my clear MRI's, but I do not feel he listened to my symptoms. I made a complete list of them and even recorded daily how I have felt for the last 2 months. He did not look at it but I asked for it to be put in my file. I also asked him how a lumbar problem could account for my blurry eyes and he could not tell me. Another test that he flunked. The good thing is that he was not ready to order an LP and was willing to give me a referral for a second opinion. My next appt. is Jan 2. I think I have decided to get the next two tests and make an appt. with a bona fide specialist in Philadelphia; my sister-in-law's dr. She has had MS for 20 yrs and recommended him. I am truly frustrated that my present neuro does not seem to be up to speed although he made the comment that he was an "MS doctor". At the same time, I realize that there are still other possibilities for a dx. I am not wanting MS, of course, and also realize that it's a waiting elimination game. I am hoping that with my results from the MRI's, EMG, vision test, blood test and symptoms in hand, I may be able to get a second opinion. If you have an opinion on whether I should have a few more tests before getting the second opinion, please let me know. I certainly want to see the specialist fully loaded. Thank you for answering. More to consider. Have a wonderful Thanksgiving.

 
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Old 11-22-2012, 12:03 AM   #13
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Re: Initial MS Diagnosis/MRI question

I would think that someone who claims to be an MS doctor and blows off the accepted criteria set forth in the Revised McDonald Criteria is doing you a disservice. I would certainly encourage you to find a bona fide MS Specialist as it appears that is your plan. Go for it! You deserve some proper answers and an off ramp to exit limbo land!
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Old 11-22-2012, 10:20 AM   #14
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Re: Initial MS Diagnosis/MRI question

Just wanted to give you a virtual ((HUG)) as I am in the same boat as you and totally understand what you are feeling AND the frustration that goes along with it! I, too, have a strong faith in the Lord and look to Him for my strength! It sure is nice to have earthly friends and a support system here on this board as well!

 
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Old 11-23-2012, 04:35 AM   #15
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Re: Initial MS Diagnosis/MRI question

Mommala.
I just wanted to send you some strength and hugs as well. I also live in Jersey, although alittle further north, but I wanted to ask you. Who are you seeing? And, why arent you looking for another doctor? I dont like what I am hearing here, and would be questioning quite a bit further, what your doctor is doing.
You dont live that far from Philly. Have you considered the Univ of Penn Neurology group? They have 7 MS specialists there....all of which are really good. THey also have an office in Camden and one in CHerry Hill. There are several other MS specialists affiliated with UMDNJ in South Jersey....

Consider getting another opinion?
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