All posts by Sid

Sid

About Sid

I had 190 units of Xeomin(incobotulinumtoxinA) for neck spasms February the 8th 2013 and had the full blown reaction March the 2nd .My initial symptoms were breathing and swallowing difficulties ,muscle weakness all over but mostly on the left side,heart palpitations,blurry vision, dry mouth and sinuses, inability to sweat ,nausea ,dizziness ,chest rash and tightness and much more.The symptoms started getting a bit less intense after 6 months.What helps a little is daily walking ,cupping therapy and relaxation techniques.Had a bad relapse at 11 month which I eventually recovered to some extent and then another one at 30 months which I'm still struggling to get out off . English is my second language so I apologize in advance for misspellings.

Allergies acting up again

The breathing problems are back in the last few weeks and and I feel very weak and anxious .I have done allergy testing last year and only showed allergic to mold and dust mites but I don’t understand why allergies are acting up now.My doctor prescribed Flonase which helped a bit last night but now I find myself having a hard time breathing and my  sinus area between my eyebrows have gotten very red and itchy and I wanted to see if its there anyone else experiencing sinus issues and allergic type of reactions more so this time of the year ?

Cold weather and small fiber neuropathy getting worse

Hi fellow soldiers !So I quit smoking around May because I was in a really bad shape and loosing weight especially muscle fat and within a week I started to get much better .The digestive issues gone ,the energy started to come back and also neuropathy got better .I started to get more engage and even was able to help my mom set up her shop and also help at times with ironing and stuff like that .I thought this is what recovery finally looks like.Around September though I got hit with a bout of weakness and was homebound again .Due to isolation ,loneliness and frustration unfortunately I picked up smoking again .While it did give me a much needed mood boost it also making anxiety and nerve pain worse .But what really always makes things much  worse for me and still happened this time around is the cold weather outside .While I try to limit exposure and don’t go outside much and I also try to push myself for some walks because I don’t want to get decondictioned  I’m still struggling with neuropathy so I was wondering If anyone has found a solution or a remedy that helps ?

Antidepressants ?!

So as you guys know I been in a relapse for quite some time now and it’s really taking a toll on me psychologically .Breathing difficulties ,general weakness and numbness and digestive issues are a daily thing now and diet  and positive thinking alone are not helping much so I was wondering if anyone had improvements or good response from antidepressants .I gotta admit…I am a bit terrified of the possible side effects cos even before the botulism they never seem to agree with me (tried most of them when I was dealing with chronic neck pain and were way to stimulating ) except Trazodone .That medication at the time helped me get a good night sleep and also curve the anxiety but I tried it about a year ago and body went numb .So I am left wondering what can I try to alleviate the symptoms especially the overwhelming anxiety which lorazepam that I’ve been taking for a while it’s not helping much now .Any suggestion or sharing experience  would be greatly appreciated .

Helpful diet suggestion ?

Hi Guys ,So looks like I am in the reactive state again and allergic to almost anything that I put in the stomach .Lower abdominal area is chronically swelled and makes the shortness of breath worse .Spicy foods and sugary ones seem to cause the most damage .Was wondering if any specific diet has been helpful to you cos all I am left with is the damn chicken and salmon .

Another stupid relapse and I am really getting tired of them .

Hi everyone ,First let me say for the new members that are here that I had some okay months and was able to do some daily activities and also was able to somewhat enjoy the summer so please try not to get discouraged from my post .

Well,I am very tired and fatigued so I will try to keep it short.About 2 weeks ago the muscle pain started to intensify ,the killer headache which I haven’t had in in a year or more hit again and after that everything went down south .The legs started getting cold ,numb and tingling and then just like I expected it radiated all over and now I been dealing with profound muscle weakness which to be honest it’s scaring the crap out of me .Body has gotten very weak especially the arms and spine muscles ,the breathing has gotten worse and the fatigue and loss of strength is quite persistent . Feeling a bit desperate since I am almost 30 months out and quite frankly didn’t expect this kind of relapse so I was wondering if any of you “old timers “out there had something like this happening this late in recovery and how long did it take to get back to baseline ?

Sending healing thoughts to everyone .

Digestive problems and severe lower abdominal pain

I have these lower abdominal crises where it swells so bad that I look like a pregnant woman even though it’s not that much painful but then when the tightness starts to kick in all hell brakes loose .Feels like the colon is getting very tight to the point that effects breathing and also makes me almost pass out from pain .Been in chronic pain for so long I believe I can tolerate medium to high pain to certain extent but when this kinda pain hits  its just unbearable .I noticed that sometimes happens when I eat a food that I shouldn’t ,stress to much or over think but also other times for no apparent reason and was just wondering if anyone else had this happening and if anything was helpful for it.

Cold weather/weather changes contributing to flair ups ?!

Its just been a really bad winter so far here to where I live and the cold weather seem that its gonna stay for a while  .It started just after the new year with the snow and freezing temperatures and that’s when my health started to get worse .Just to make sure that it the recent cold weather contributing and not other factors I went back and read all my old posts and almost all my relapses seem to happen right when the temperatures have been the lowest of the year  .I know it might sound a  bit weird to some  cos after all the temperature in the house is at 76 and also haven’t got out much lately  but I really can’t find other solid triggers and now even my family and friends  are looking at me funny  .Anytime it snows i just can feel the breathing getting worse and with that the numbness,chest tightness,throat problems  and so on.It is really driving me nuts  .I was just wondering if some of  you also have this kind of sensitivity to weather changes and if moving to warmer places  helped with it ?  I been thinking to give  Myrtle Beach a try for a week but flying its still out of the question and driving 14 hours to there its gonna quite hard, especially on the way back if the change of climate doesn’t help .

Joint pain from the gut

Just came across this study on the mayo clinic facebook page and I found it very interesting how more and more recent  studies are showing a strong connection between gut bacteria and autoimmune disease. : http://www.theatlantic.com/health/archive/2015/01/joint-pain-from-the-gut/383772/?linkId=11681605

Anyone else having worsening of their symptoms at this time of the year?!

Hi Guys,I was doing a bit better with going organic and the AC(activated charcoal ) treatment but just like last year this time around I’m back to square one again with violent muscle spasms/twichings ,breathing gets worse and also chest tightness and palpitations. Granted I did go for a pt evaluation and the therapist I would say was a bit to strong on my neck but still just trying to figure out if maybe its not just me and weather change has something to do with the relapse/worsening as well. Quite honestly the anxiety has gotten worse also since I am terrified of getting thru another breathless relapse .

Thanks in advance and sending healing thoughts to everyone.

Anyone having constant problems (numbness,weakness,dryness ) in one part of the body more than in the other ?!

I had this problem since the reaction (left side ) and anytime I have a flair up or symptoms get worse I noticed that the first sing is left side weakness and numbness .I really hope its not a circulation problem but more of a neuropathy one.Anyone experienced this problem as well ?!

Thnx in advance and sending  healing thought to everyone out there .

Feeling faint and very weak after eating

I noticed this new development in the last week or 2 and is quite scary .The weird thing is that the blood pressure and heart come almost perfect …Urghh hard to make sense of any of these symptoms but just wondering if anyone had this happening .

Back to ER after a year

So the disease has been ruthless with me on   the return in the last 3-4 months and strangely  enough somehow I convinced myself that they might offer some help…What a disappointment ….As soon as the doc asked how can I help u tonight I realized that I have to fight this alone…I listed  10 plus quite bad pains and symptoms but none of which they can come up with a solution  ,,,frustrating ,,,,So to hell with it since I already was foolish enough to take the trip I decided I might as well try  some experiments so I told them to try some antihistamines  which other then make my mouth even dryer nothing good came out of it …They wanted to do some blood work but I told them don’t bother with it since other then billing my insurance for thousends of dollars I doubt anything  helpful would show …7 hours later and here in my bed I am left with the same debilitating muscle pain and also the dilemma that I had prior to go there ..What do I do or what do I try   next ?!        Tomorrow just like the past month I am gonna wake up gasping for air  like I been strangled all night long …muscles like I been hit with baseball bat ….terrorized like I have been in a horror movie …and  tired and exausted to confront  it all over again .

Probably noticeable dealing with all this the depression is not getting better at all.So for now I will just pray and hope that I might have a break in the comming months and remind myself that Its just part of the recovery that I have to try and  deal with .

Also I do apologize for my little rant tonight and wishing better healthier days  ahead to all of us.

 

 

 

Heat Intolerance

Hi Guys

I been looking forward for the warm weather but looks like this spring is not gonna be as much fun as i thought it would.Today we had temp on the 70s and I been feeling like fainting all day mixed with lung weakness.I am at the 14 month point and I really thought by now the heat intolerance would be gone since I have plenty of symptoms to deal with.

I guess just a little frustrated cs I made a plan for recovery starting  spring and now looks like I can’t  even go outside .Anyone else had this problem at this stage ?!

Antibiotics that might help with throat and sinus problems

Hey guys I hope that spring is treating u better then the winter and also bringing some much needed relief.My sinuses and throat no matter what remedy I try they are still quite bad and I was wondering if anyone has tried any antibiotics and found them helpful.

I have an apt with my primary care doc and I am probably gonna ask for a script but don’t know which one might be effective.

Thanks

Has anyone had any positive results from Intravenous Immunoglobulin therapy ?!

I was suggested this therapy from a neurologist that is quite familiar with the effects of the toxin but its getting very hard to find a physician to administered it since my primary care doctor today told me that this is complicated for him.On the other hand I have to admit since the reaction to the toxin I am terrified of the possible side effects of the therapy and I was wondering if anyone had that treatment done and if any positive results were noted .

 

Medication that helps with muscle tightness ?!

Hey guys..I am in a little bad spot in here regarding muscle problems and I was wondering if anyone found any medication helpful….prior to the reaction I was having some muscle pain issues (much less and not so complicated) and depakote even though it made me feel like a zombie helped with it plus I was doing a lot of gym….Now my nervous system I think is much more sensitive since the reaction and I am quite scared to try that strong medication but nevertheless I was wondering if less potent ones like neurontin or lyrica had any good effect on u?! By the way I am currently taking lorazepam 0.5 twice but not that helpful ….
thanks in advance

Throat almost paralyzed

To start with from ppl that are looking for encouragement and positivity I will say that I was doing better from months 6 and after but I got a relapse and  some symptoms have gotten worse.Now what worries me is that almost a year has past and my throat is getting tighter and the ability to swallow and gargle and talk ( with my normal voice) is getting harder and harder .When I drink or eat I have to give it like 2 times or 3 to pass it  while my throat burns and gets numb …I always had throat problems thru this ordeal but for some reason even after a year looks like its getting worse  .Now I won’t ask about treatments since I have tried everything but I was curios if someone of u guys had this happening and how long did it take to get it under control.

Thanks in advance

Relapse…Left side numbness and blader issues

So I am almost 12 months post reaction and 13 months post injections and bed ridden again and my anxiety and depression has gotten worse also.It started with breathing getting very shallow and then neck got extremely tight and the boom .The main concern is the left side weakness and numbness which its been for a week going on and its very scary for me and no matter what I try no help.I was thinking to go to the er but I doubt they have anything to offer expect to look at me like I am having a hypochondriac moment which probably gonna make me even more frustrated.Anyhow I just wondering if anyone here had this kind of relapse and was anything helpful for it.

By the way I was doing a little better from months 6 and after (not much better but at least my problem wasn’t 24/7 and I had some relief to grab a cop of coffee or try to exercise).

Hope that u are having a smother recovery and any output would be appreciated

Considering legal action

First of all the winter its been terrible for me and I hope that u guys are not having as much of a hard time…there is not one symptom that I can not list here that hasn’t gotten worse but I guess that’s part of the recovery…second thing I went to a allergy doc and I got tested but as we are come to know now that test came negative as well.

I been thru hell and I have been considering taking legal action but I don’t know where to start and I don’t know if they  gonna take me serious since all I have are symptoms but none of the test comes positive for anything and in top of that doc seem to either cover up for them or just are not educated of the dangers of the toxin spreading .

So far I only have phrenic nerve damage diagnose from U of M er department (based on symptoms and spiometry test which showed some diaphragm  weakness).

My quetion would be has anybody taken legal action and if yes can u recommend me a lawyer that is knowledge about the dangers of the toxin.

Thanks in advance.

Vacation

I live in Michigan and the weather here in the last 2 weeks   its been very cold and I think it has made my symptoms unbearable specially the breathing and weakness.So my question is this…Has anyone tried a good weather place like florida or miami and if yes did u had any relief …Thanks in advance