New here, anyone get pressure on the side of your neck?

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KO-LD
Veteran Member


Date Joined Aug 2007
Total Posts : 887
   Posted 7/19/2010 5:21 PM (GMT -6)   
If feels like someone is pressing on the right side of my neck.  I don't have MS, my doctor was leaning that way, but my MRI showed no lesions.  Thanks

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3518
   Posted 7/22/2010 7:51 AM (GMT -6)   
Welcome.  Have you asked about this on the Lyme board?  I know our symptoms are very very similar.  It is good news that you have a clear MRI.  Even if you had lesions show up, it would be hard to get an MS diagnosis.  MS is a diagnosis of exclusion.  If you have any other reason for those lesions, they typically blame that rather than diagnose MS.  Keep treating your lyme aggressively. 
 
I don't have pressure on the side of my neck.  I do have lots of weird sensory things however.  It seems very MS-ish.  Is it also common in Lyme?  I have lots of abnormal sensations in my lower legs.  My feet are nearly completely numb.  I get crawly feelings.  Feelings of cold or wet when there is no reason.  Feelings of pressure and tightness and the like.
 
Best of luck to you.  Please keep us posted. 
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


KO-LD
Veteran Member


Date Joined Aug 2007
Total Posts : 887
   Posted 7/22/2010 9:07 AM (GMT -6)   
Gretchen1,
I have been diagnosed with lyme.  It's funny that you said it is hard to be diagnosed with MS, because that's the way the Neuro that I first saw was really leaning, even with no lesions.  She wouldn't even test me for lyme even with all my history of exposure, but then again she also lied to me and falsified my records saying I had symptoms that I never had (I think so she could send me for tests and "therapy" that her office would provide).  I know that the 2 diseases share so many symptoms, that's why I wanted to check if people with MS get this, I've asked on the Lyme board and it doesn't seem like it's a big symptom of lyme.  It's gotten worse lately and some days it's all day not just at night.  Did you used to post on the lyme board your name sounds familiar?  Thanks, KO
01 Tingling in fingers/toes both sides, not tested at that time for LD
07 Summer pos. WB, diag with LD, neg for co-infections thru Igenex
Abx - Doxy 100mg 2x/day for 3 weeks (before diagnosis)
Amoxicillin 1gm 2x/day for 1 month
Amoxicillin 1gm 3x/day with Probenecid 500mg 2x/day  5 months 
Dr. Zhang's protocol stopped after 6 months symptoms returned.  Started Buhner's protocol May 2009


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3518
   Posted 7/22/2010 10:02 AM (GMT -6)   
KO-LD,
 
I have posted on the lyme board.  I don't think I have lyme.  I don't think I ever had lyme.  There are been some unbelievabley ugly arguements between lymers and MSers.  We have had lyme patients come here and tell us that MS doesn't exist and we are just ignoring the fact that we have Lyme.  I am very supportive of Lyme patients.  I do believe that chronic lyme exists and that it could possibly trigger autoimmune disease.  That is the looong story of why I have posted and why my name might possibly be familiar smilewinkgrin
 
My sensory stuff can come and go.  My numbness is in direct relationship to spinal lesions.  My numbness does not come and go.  I woke up flaring a couple of years ago and I have had it ever since.  I am on DMD for MS.  I take copaxone.  It seems to be doing what it claims it will do. 
 
Ask any questions you may have.  I hope what I have posted is helpful.
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


KO-LD
Veteran Member


Date Joined Aug 2007
Total Posts : 887
   Posted 7/22/2010 12:02 PM (GMT -6)   
Hi Gretchen,
My first symptom was my ring finger on my right hand kind of spazing for no reason, then i developed tingling that spread to my other fingers, then on my other hand and finally to both feet.  It has only gotten worse, and higher on my arms and legs.  It doesn't go away, I just notice it more certain times of the day.  Most doctors seem to gloss over it, or prescribe Lyrica etc without being concerned about the reason.  I really don't buy into treating the symptoms and ignoring the reasons for the symptoms.   I guess this isn't a big symptom for people with MS so I guess that's good at least.
Thanks, KO 
01 Tingling in fingers/toes both sides, not tested at that time for LD
07 Summer pos. WB, diag with LD, neg for co-infections thru Igenex
Abx - Doxy 100mg 2x/day for 3 weeks (before diagnosis)
Amoxicillin 1gm 2x/day for 1 month
Amoxicillin 1gm 3x/day with Probenecid 500mg 2x/day  5 months 
Dr. Zhang's protocol stopped after 6 months symptoms returned.  Started Buhner's protocol May 2009


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 7/22/2010 1:21 PM (GMT -6)   
Hi KO-LD,

I too have experienced the pressure in the sides of my neck before.....but I don't have a dx of MS, I just have symptoms, but my brain MRIs so far are clean. As you probably know, I do have Lyme, and several co-infections, but I pay attention to this forum too because I have so many of the symptoms of MS.

I understand your frustration about the doctors not really being concerned with weird symptoms like peripheral neuropathy etc.....I think they "gloss over" such things because they don't know what to do about them. I have the tingling in my fingers off and on. My neurologist says I have pinched nerves in my elbows and that accounts for the tingling. Have you had an EMG done?

JoAnn
Lyme Disease, Babesiosis, Ehrlichiosis, Bartonella, AIH, Hashimoto's, lupus, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, L3-4 and L4-5 radiculopathy -> severe lower back pain, cubital tunnel, tarsal tunnel, IV Rocephin, Alinia, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

autoimmunediseasesgfliving.blogspot.com


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3518
   Posted 7/22/2010 2:20 PM (GMT -6)   
Yeah numbness and tingling aren't really the symptoms we worry about.  Its when you wake up and you can't move a leg or legs, or when you have lost the vision in one or both eyes etc.  Numbness is just a nuisance.  Sometimes that numbness can lead to nerve pain however.  My legs do this icy/hot thing in the evenings when I am tired.  It can get really painful.  Then I care!!!  This presents as "peripheral neuropathy" but its actually caused by damage to the brain or central nervous system. 
 
 
 
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


KO-LD
Veteran Member


Date Joined Aug 2007
Total Posts : 887
   Posted 7/22/2010 2:50 PM (GMT -6)   
Hi JoAnn & Gretchen,
 
When I first had the tingling and went to the neuro back in 2001 she did every test under the sun, but wouldn't do one for lyme eventhough I told her about our camping, hiking etc (I didn't have a bull's eye rash).  She only found bulging discs' in my neck which she said were causing the tingling.  It wasn't until it got much worse and I was in seeing my GP for my yearly pap and mentioned what was going on and what the neuro had told me.  She was the one that said that that couldn't be and I should have it checked out.  I went back to the same neuro because I figured she already had run a bunch of stuff the first time 5 years before, and I also wanted to confront her about what my GP had said.  She admitted that that was true (that I wouldn't have tingling on both sides and also in my feet and legs from bulging discs in my neck).  Then she re did all her test including the EMG, which she does, but not the MRI.  Everything was OK except for an elevated ANA and some of her neuro exams that she performed were off.  She wanted me to go to PT (which she does in her office) again which did no good the first time and I really didn't want to waste my money again.  I asked about a lyme test again, she still didn't want to do one, but i got her to order one anyway.  CDC pos on the western blot.  That's when I started to really look into lyme.  Until that time I trusted my doctors to know what they were talking about.  I'm afraid that this is just another symptom of things getting worse. 
I haven't found anything that can cause the pressure in the neck thing, so I'm guessing it's the lyme, or the lyme has triggered something else and it just hasn't gotten so obvious that the doctors can tell what it is yet.  Thanks, KO
 
P. S. Gretchen
 is it only lose of vision or could drastic change also be a sign/symptom of MS.  The reason I ask is because when I turned 40 right around the time the tingling started my vision went from better than 20/20 (the doctor used to kid calling me super vision) to being blurry to the point that it really scared me because this happened literally overnight.  I was scared enough to see a doctor about it and I really try to avoid doctors at all cost, which is impossible now.
 
01 Tingling in fingers/toes both sides, not tested at that time for LD
07 Summer pos. WB, diag with LD, neg for co-infections thru Igenex
Abx - Doxy 100mg 2x/day for 3 weeks (before diagnosis)
Amoxicillin 1gm 2x/day for 1 month
Amoxicillin 1gm 3x/day with Probenecid 500mg 2x/day  5 months 
Dr. Zhang's protocol stopped after 6 months symptoms returned.  Started Buhner's protocol May 2009


betterhealth
Regular Member


Date Joined Mar 2010
Total Posts : 230
   Posted 7/22/2010 4:31 PM (GMT -6)   
I have lyme too, but am very concerned that it may be progressing into MS. My Neurologist even told me that he thinks that I am somewhere between chronic lyme and MS. I had a couple of eye events this past year and have severe neuropathy that is progressing into muscle weakness and fatigue. I sometimes have difficulty walking because it seems like my brain is not communicating with my legs correctly. My MRI's have also been clear so far.
I have another brain MRI scheduled next Thursday. My LLMD spent a lot of time talking to me about MS on my initial visit, probably because my spinal revealed 3 oligloclinal bands. I think they are leaving the door open to the possibility that I could have MS.

Gretchen,
Thanks for answering so many of the questions we have posted here and being helpful to Lyme folks concerned about MS.
Peace and Healing
Lyme Disease - Doxycyline, IV-Rocephin, Amoxicillin, Azithromycin, Ceftin.
 
 


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 7/23/2010 10:14 AM (GMT -6)   
Gretchen1 said...
There are been some unbelievably ugly arguments between lymers and MSers. We have had lyme patients come here and tell us that MS doesn't exist and we are just ignoring the fact that we have Lyme. I am very supportive of Lyme patients. I do believe that chronic lyme exists and that it could possibly trigger autoimmune disease.


BTW, I'm very sympathetic and totally in agreement with you, Gretchen. It's such a shame that some people get so wacked out about this stuff.....and it's not surprising that some Lymies sound a bit crazy because the spirochetes get into your brain and can make you crazy, unfortunately. There is this thing called "Lyme rage"; I haven't had much of an issue with it but it's a real problem for some.

But I don't want to make excuses for their bad behaviour. The way I put it whenever I dare to make any sort of statement about it is: "Lyme can both mimic AND trigger autoimmune diseases and fibromyalgia". In my case, a number of my AI diseases and my fibro were likely triggered by my Lyme disease.

I think it's good for people with AI diseases and fibro to at least be aware of the possibility that they may have Lyme....it doesn't hurt to be tested (except financially if you don't have insurance to cover). Lyme is so much easier to catch these days than people realize. You don't have to be an avid hiker or camper to get it. Too bad the blood tests aren't more accurate but that's all we have at the moment.

I'm glad that you are still so open to "Lymies", Gretchen!
Lyme Disease, Babesiosis, Ehrlichiosis, Bartonella, EBV, CMV, AIH, Hashimoto's, lupus, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, L3-4 and L4-5 radiculopathy -> severe lower back pain, cubital tunnel, tarsal tunnel, IV Rocephin, Alinia, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

autoimmunediseasesgfliving.blogspot.com


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 7/23/2010 10:38 AM (GMT -6)   
betterhealth said...
I have lyme too, but am very concerned that it may be progressing into MS. My Neurologist even told me that he thinks that I am somewhere between chronic lyme and MS. I had a couple of eye events this past year and have severe neuropathy that is progressing into muscle weakness and fatigue. I sometimes have difficulty walking because it seems like my brain is not communicating with my legs correctly. My MRI's have also been clear so far.
I have another brain MRI scheduled next Thursday. My LLMD spent a lot of time talking to me about MS on my initial visit, probably because my spinal revealed 3 oligloclinal bands. I think they are leaving the door open to the possibility that I could have MS.


Gary, I'm so so sorry to hear this! I have had some of the exact same problems with muscle weakness and walking (like my brain is no longer "talking" to my legs), but so far have had clean MRIs and a negative lumbar puncture.

I really hope that Lyme has not triggered MS in you! You're in my thoughts and prayers.......
JoAnn
Lyme Disease, Babesiosis, Ehrlichiosis, Bartonella, EBV, CMV, AIH, Hashimoto's, lupus, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, L3-4 and L4-5 radiculopathy -> severe lower back pain, cubital tunnel, tarsal tunnel, IV Rocephin, Alinia, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

autoimmunediseasesgfliving.blogspot.com

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