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How to prove it is not MS to a doctor?


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How do you convince a neurologist who specializes in Multiple Sclerosis that your walking/muscle problems are due to withdrawal and not MS?  The neuromuscular specialist I see tomorrow at Cleveland Clinic specializes in MS.  Looking at the symptoms, many of them are exactly the same (due to both directly affecting the nervous system).  I do not want to take any MS meds, because I am almost positive that I do not have it.  (Obviously if a year goes by, I would reconsider.  But I am pretty sure it is strictly benzo withdrawal.  Any suggestions?

 

I tapered too fast, and I am having severe muscle issues and trouble walking, unless I take flexeril every 8 hours.  Within 48 hours of no muscle relaxers, I show signs of athetosis (weird hand movements and fingers locking and moving oddly) Ataxia, Apraxia, and dystonia.

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How do you convince a neurologist who specializes in Multiple Sclerosis that your walking/muscle problems are due to withdrawal and not MS?  The neuromuscular specialist I see tomorrow at Cleveland Clinic specializes in MS.  Looking at the symptoms, many of them are exactly the same (due to both directly affecting the nervous system).  I do not want to take any MS meds, because I am almost positive that I do not have it.  (Obviously if a year goes by, I would reconsider.  But I am pretty sure it is strictly benzo withdrawal.  Any suggestions?

 

I tapered too fast, and I am having severe muscle issues and trouble walking, unless I take flexeril every 8 hours.  Within 48 hours of no muscle relaxers, I show signs of athetosis (weird hand movements and fingers locking and moving oddly) Ataxia, Apraxia, and dystonia.

 

If your neuroligoist has half a brain they won't give you any diagnosos while withdrawing from benzo's. The MRI's they take during this time are pointless, as they give false positives for alot of things. So this is quite simple, wait until you're body has recovered then go for an MRI. I know people that have been diagnoses with MS and 5 years later they are "miraculously" healed. All the sclerosis gone. Now that's not possible, so that simply means the doctors got it wrong in the first place. Doc's love their new toys, and MRI's are one of the cool toys they love to use. And then throw around fancy diagnosis that require very expensive medicine. Tell them to wait until you feel recovered, it's that simple. If they don't believe you, tell them to fuck off.

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If a doc accepts written material at the time of appointment

they will not have time to digest its relevance.

Taking the Ashton Manual is good for reference later.

 

I would prepare one sheet with brief citations about

nerves symptoms regarding benzo illness.

The sources must be credible to a doctor.

 

It would be good if you could email or fax this to them today.

I guess part of you question would be which citations;

but I don't have that information.

Citations about post-withdrawal chronic illness might do.

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How do you convince a neurologist who specializes in Multiple Sclerosis that your walking/muscle problems are due to withdrawal and not MS?  The neuromuscular specialist I see tomorrow at Cleveland Clinic specializes in MS.  Looking at the symptoms, many of them are exactly the same (due to both directly affecting the nervous system).  I do not want to take any MS meds, because I am almost positive that I do not have it.  (Obviously if a year goes by, I would reconsider.  But I am pretty sure it is strictly benzo withdrawal.  Any suggestions?

 

I tapered too fast, and I am having severe muscle issues and trouble walking, unless I take flexeril every 8 hours.  Within 48 hours of no muscle relaxers, I show signs of athetosis (weird hand movements and fingers locking and moving oddly) Ataxia, Apraxia, and dystonia.

 

If your neuroligoist has half a brain they won't give you any diagnosos while withdrawing from benzo's. The MRI's they take during this time are pointless, as they give false positives for alot of things. So this is quite simple, wait until you're body has recovered then go for an MRI. I know people that have been diagnoses with MS and 5 years later they are "miraculously" healed. All the sclerosis gone. Now that's not possible, so that simply means the doctors got it wrong in the first place. Doc's love their new toys, and MRI's are one of the cool toys they love to use. And then throw around fancy diagnosis that require very expensive medicine. Tell them to wait until you feel recovered, it's that simple. If they don't believe you, tell them to fuck off.

 

:laugh: :laugh: :laugh: Just about spewed coffee all over my computer screen when I got to the end of this one. Totally agree!

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If you know in your heart and gut you do not have MS, you may want to cancel the appointment.  I don't think you have MS either, so what's the point?  Like Milky Way said, wait until you heal from benzos and see what's left.  Withdrawal mimics so many of these misdiagnosed illnesses.

 

Sofa

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How do you convince a neurologist who specializes in Multiple Sclerosis that your walking/muscle problems are due to withdrawal and not MS?  The neuromuscular specialist I see tomorrow at Cleveland Clinic specializes in MS.  Looking at the symptoms, many of them are exactly the same (due to both directly affecting the nervous system).  I do not want to take any MS meds, because I am almost positive that I do not have it.  (Obviously if a year goes by, I would reconsider.  But I am pretty sure it is strictly benzo withdrawal.  Any suggestions?

 

I tapered too fast, and I am having severe muscle issues and trouble walking, unless I take flexeril every 8 hours.  Within 48 hours of no muscle relaxers, I show signs of athetosis (weird hand movements and fingers locking and moving oddly) Ataxia, Apraxia, and dystonia.

 

i don't think your doctor will treat you for MS based on symptoms alone, and instead may do further testing.

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I wonder how you got your referral, and who decided which doctor.

 

They have a general neurology center, and a brain health center.

Your appointment might be in the general center,

and maybe it should be in the brain health center.

 

It occurs to me that benzo injury could trigger an ms episode.

Stress is commonly associated with emergence of latent ms.

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I guess I should clarify.  The reason I am seeing a doctor is because the muscle spasms have gotten so bad that without a muscle relaxer, I completely lose the ability to walk.  (And, my arms and legs randomly flail uncontrollably, and I cannot stop it.)  I went to a regular neurologist, and she made an appointment with a neurologist that deals with muscle issues (which makes sense).  However, i realize the doctor is also one of the MS specialists.  (Makes sense, considering the symptoms do overlap quite a bit). 

 

I have not seen the muscle specialist yet.  Even if he does diagnose me, the only thing I need is to find out which exercises & physical therapy will help me restore my muscles.  I don't want to do any damage.  He may understand benzo withdrawal, or agree that it may be a temporary issue. 

 

I know many people have issues with sore and tight muscles.  I have been walking across a room, and just have my leg stop mid air.  If I am moving too quickly and this happens, I fall.  Other times my legs just go any random way, so I am unable to walk with any purpose.  Thanks for all the input.

 

I guess it is possible that it could be MS, and the stress brought it on.  However, I want to wait several months before I accept this (if this is what the doctor says it is).  However, I can't just wait it out, because of the pain but mostly because of the lack of movement.

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A couple of weeks ago I was thinking I had MS.  I decided that waiting a bit longer to investigate wouldn't hurt me, and now I am better....that is just my story.  If you have MS and it was covered up by Benzos the symptoms won't resolve...and I want resolution and healing for you!  Best wishes and please keep us updated!
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Will your Doctor read  'the Ashton manual'' as it states that withdrwal symptoms are often mistaken for MS, or show them  the passage I've posted below, and marked out what you need to see in purple with the link to the manual page its on underneath if you'd rather try it that way with them. :)

 

 

Withdrawal Symptoms

 

The benzodiazepine withdrawal syndrome has been described by many authors.(2,9,21,25) The syndrome can be of considerable severity and has similarities to abstinence syndromes associated with alcohol, opiates, and barbiturates. The symptoms may develop insidiously while the patient continues to take therapeutic doses or may occur on dosage reduction or drug withdrawal. In the latter case, the onset of the syndrome is related to the pharmacokinetic properties of the benzodiazepine involved, appearing sooner with rapidly eliminated drugs. The time course is often characterised by the early appearance of acute anxiety and psychotic symptoms (1-2 weeks after withdrawal),(26) followed by a prolonged period (many months)(21) of gradually diminishing mixed psychological and somatic symptoms.

 

Symptoms described during benzodiazepine withdrawal are very numerous, and most patients experience many of them.(21) Psychological symptoms are predominantly those of acute anxiety, with insomnia, hyperactivity and panic attacks. Agoraphobia, other phobias, and depression are common during withdrawal, disappearing as the syndrome subsides. Perceptual distortions (sometimes hallucinations) and feelings of depersonalisation and unreality are characteristic. Acute psychotic episodes occur occasionally, but obsessions, intrusive thoughts and memories, and paranoid feelings are not uncommon. Irritability, rage, and aggression are also frequent and it is possible that some of the apparently paradoxical stimulant effects of chronic benzodiazepine use are, in fact, withdrawal symptoms.

 

Neurological symptoms include episodes of paraesthesiae and numbness, tremor, muscle pains, stiffness, weakness and fasciculation, ataxia, and blurred or double vision – a symptom cluster which occasionally** leads to the mistaken diagnosis of multiple sclerosis.** Hypersensitivity especially to sound but also to light, taste, and smell; headache; and tinnitus are common; and formication and itching are not infrequent. Major convulsions or temporal lobe seizures sometimes occur on abrupt withdrawal.

 

http://www.benzo.org.uk/adv.htm

 

Love Nova xxx  :smitten: :smitten: :smitten:

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I guess I should clarify.  The reason I am seeing a doctor is because the muscle spasms have gotten so bad that without a muscle relaxer, I completely lose the ability to walk.  (And, my arms and legs randomly flail uncontrollably, and I cannot stop it.)  I went to a regular neurologist, and she made an appointment with a neurologist that deals with muscle issues (which makes sense).  However, i realize the doctor is also one of the MS specialists.  (Makes sense, considering the symptoms do overlap quite a bit). 

 

I have not seen the muscle specialist yet.  Even if he does diagnose me, the only thing I need is to find out which exercises & physical therapy will help me restore my muscles.  I don't want to do any damage.  He may understand benzo withdrawal, or agree that it may be a temporary issue. 

 

I know many people have issues with sore and tight muscles.  I have been walking across a room, and just have my leg stop mid air.  If I am moving too quickly and this happens, I fall.  Other times my legs just go any random way, so I am unable to walk with any purpose.  Thanks for all the input.

 

I guess it is possible that it could be MS, and the stress brought it on.  However, I want to wait several months before I accept this (if this is what the doctor says it is).  However, I can't just wait it out, because of the pain but mostly because of the lack of movement.

 

I don't think you have MS, but that's just my personal opinion. During withdrawal my muscles were so weak I couldn't stand up, literally. So there's no doubt that withdrawal can make your muscles go crazy, spasm, cramp, weaken etc. That's why you should wait and see if those symptoms go away or if they hang around. But remember, recovery takes time. It took me 3 years. Now of course, if you're really afraid it might be something like MS then go get the tests done, but keep in mind, they might give you a wrong diagnosis. And even start you up on some hardcore medication that you don't have to take, that might even kill you. It happens more often than you think. Wrong diagnoses happen all the time and might have severe consequences.  So if they insist on testing you and giving you a diagnosis, fine. Let them, but don't start on any medication until you're recovered from benzo's. Then if you still feel something is wrong, go have another MRI, and if there are any lesions on the scan start up on the medication. Diagnosing an autoimmune disorder is really hard, almost impossible if you don't have the right people doing it.

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Nova, thank you!  I knew I saw that somewhere and wanted to show it to the doctor I couldn't find where I read it.  That is exactly what I wanted!

 

:thumbsup:

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Just curious if you don't mind me asking, did the the MRI show any suspicious lesions? If your MRI is normal that would lean more towards w/d.  There is always a second opinion as well.  I wouldn't want to start any unnecessary meds at this time either.  Best of luck to you. 
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I dont get the MRI until friday.  I had an MRI 10 years ago I did have one or two brain lesions caused by migraines. I don't know if they go away but my migraines get much worse so I'm guessing I may have a few lesions.

 

Either way, I don't plan on taking meds unless they are temporary to help me function, like flexeril

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I dont get the MRI until friday.  I had an MRI 10 years ago I did have one or two brain lesions caused by migraines. I don't know if they go away but my migraines get much worse so I'm guessing I may have a few lesions.

 

Either way, I don't plan on taking meds unless they are temporary to help me function, like flexeril

 

Migrains can't do the permanent myelin damage that MS does. So the doctors will know exactly if it's a MS lesion or a white matter mirgain lesion. That's literally their job, reading the images correctly. Don't worry, i'm guessing the MRI will show nothing to worry about.

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UPDATE: although the neurologist was in the Mellen Center at Cleveland Clinic (which specializes in MS), he did not even bring this up. He seemed familiar with issues related to Klonopin. While I didn't get an official diagnosis, he said it was my body readjusting to being off the meds, combined with additional stress due to the fact that everything in my system has been slowed down (or depressed, in regards to the nervous system) for so many years. He thinks my movements will stabilize in time, and doesn't think it will be long term. He ordered a few blood tests and an EEG (Which he stated he expected both to come back normal, he just wanted to make sure I am not having mini seizures, and rule out the possibility of a few obscure diseases). He ordered physical therapy. He did a complete workup with me, listened to my concerns, and didn't discount anything I said. He also suggested that IF I do need to take psych meds in the future, he would suggest only taking 1, and if it doesn't work, to try another drug completely. He said the fewer medicines (of any kind, mental or physicial) a person takes, the better! Again, he never actually stated benzo withdrawal, but everything went much better than I could have hoped! I do still have an MRI scheduled this Friday.
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UPDATE: although the neurologist was in the Mellen Center at Cleveland Clinic (which specializes in MS), he did not even bring this up. He seemed familiar with issues related to Klonopin. While I didn't get an official diagnosis, he said it was my body readjusting to being off the meds, combined with additional stress due to the fact that everything in my system has been slowed down (or depressed, in regards to the nervous system) for so many years. He thinks my movements will stabilize in time, and doesn't think it will be long term. He ordered a few blood tests and an EEG (Which he stated he expected both to come back normal, he just wanted to make sure I am not having mini seizures, and rule out the possibility of a few obscure diseases). He ordered physical therapy. He did a complete workup with me, listened to my concerns, and didn't discount anything I said. He also suggested that IF I do need to take psych meds in the future, he would suggest only taking 1, and if it doesn't work, to try another drug completely. He said the fewer medicines (of any kind, mental or physicial) a person takes, the better! Again, he never actually stated benzo withdrawal, but everything went much better than I could have hoped! I do still have an MRI scheduled this Friday.

 

Thats great, seems like you got a good doctor. Like he said, with time this will regulate. Our body goes through a real beating when we use benzo's.

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Well done Dolphinator;  you deserve a win  :thumbsup:  I hope the MRI goes well and that these symptoms of yours show some improvement soon  :P
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Fortunately the MRI showed no brain damage!  Yeah.  Now I just have to work on physical therapy and getting my muscles back in order so I can walk normally again!
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